M S S T R AT E G I C D E S I G N A N D M A N A G E M E N T I N T E G R AT I V E S T U D I O 1 - S P R I N G 2 0 1 8 PARSONS SCHOOL OF DESIGN
CARE CONNECT PARTNER
PAGE 02
“Resilience as a deeper expression o character and, at the same time, as g possible reconciliation between hum nature, between human beings and complexity of our world.�
TABLE OF CONTENTS Introduction 04
EZIO MANZINI
08
Design Timeline
10
Research
12
Sensemaking
44
Ideation
50
Prototyping
54
Conclusion
72
Bibliography
74
Appendix
76
PAGE 03
of the human ground for a man beings and d the irreducible
Executive Summary
INTRODUCTION
PAGE 04
Our team first gathered in January 2018 as part of the Studio 1 Intensive Course, a key component of the Parson’s Strategic Design and Management Masters Program. We came together as a group during our week-long intensive session, and continued to collaborate virtually through the duration of the semester. We’re a multidisciplinary crew of eight who come from around the world, with team members scattered across multiple continents stretching from Eugene, Oregon to Jeddah, Saudi Arabia. We’ve applied our backgrounds in Strategy and Innovation, Government and Public Policy, Healthcare, Education and Advocacy, Interior and Graphic Design, Museum and Arts Administration, Micro and Social Enterprise, and Nonprofit and Community Management, in order to come together using human-centered design to tackle organizational challenges for a client: PMDAlliance.
TEAM MISSION
Our mission is to co-create human-centered design strategies that engage complex and meaningful organizational challenges.
TEAM VISION
Our vision is that our human-centered and co-creative approach to problem solving will become integral to the structural foundation of the organizations with which we collaborate.
TEAM VALUES
Co-Creation Sustainability Humility Dignity Authenticity Transparency
HIND ANSELMI
BLAIR CORCORAN DE CASTILLO PROJECT MANAGER
K A I T LY N EL L I S O N PROJECT MANAGER
ADEBOL A FADINA
ARMINAS NOVAK AS
APARNA SUD
I LYA WA S H I N G TO N
PAGE 05
JOH AN MAT THE WS C I EDN T E N A G E M E N T L EL A
THE TEAM
SOURCE: PMDALLIANCE
PAGE 06
ABOUT PMDALLIANCE The Parkinson & Movement Disorder Alliance (PMDAlliance) is an Arizona-based nonprofit offering opportunities for people with Parkinson’s and other movement disorders to Learn, Live Life more fully, and Connect to a support community. The organization holds one-of-a-kind conferences as well as virtual programs to help people with this medication-dependent condition as well as their support systems to find the emotional support they need, in addition to learning the medical information and helping sourcing the resources they require to treat Parkinson’s Disease (PD). PMDAlliance focuses their support on the wide community surrounding the person with PD, creating programs for the spouses, friends, and family caring for these people (Care Partners and Adult Children) as well as those leading support groups (Support Group Leaders). This strengthens the ties that connect all of these different individuals, providing techniques to help improve the quality of life and to show people with PD and their families how they can live full lives even while coping with PD. During the initial intensive, we immediately connected with the founder of this organization, Sarah Jones. Through several discussions with her, members of her team, and participants in her programming, we gathered information about her organization’s history and current needs.
CLIENT BRIEF During that first initial week with Sarah and the PMDAlliance team, we strove to determine what it was that they most needed from this experience. This is an organization utilizing personal connection, trust, and empathy to build rapport with a diverse group of stakeholders. And they are striving to continue to do so while expanding their services both geographically and in the types of audience they serve.
1 2 3 4
Refine PMDAlliance messaging for clients and funders Develop strategies to promote growth Find ways to scale programming while retaining quality Explore potential sources for revenue diversification
PAGE 07
The process revealed several priorities for the organization. They were seeking to better articulate their core DNA, or value proposition, they wanted to polish their branding, and they wanted to address a growth strategy as they planned to scale over the next couple of years:
PAGE 08
EXECUTIVE SUMMARY Our team gathered together for a 16-week long session exploring the current state and future goals of PMDAlliance. This organization serves a complex network of stakeholders and their needs all surrounding a very sensitive subject, that of a personal and debilitating medical condition. This made our first step, the research phase, a challenge. We carefully balanced between emphasizing depth and breadth in our investigations, conducting both primary and secondary research to get an idea of how PMDAlliance works, what their needs are, who their audience is and what their audience’s needs are, as well as the larger ecosystem in which the nonprofit functions. We moved from there through a sensemaking stage in which we worked through the large amounts of data we had collected in order to seek out meaningful patterns. We used a variety of design techniques to surface the most important things and to rephrase what their most urgent needs were. We then utilized these discoveries to begin to ideate and prototype solutions to PMDAlliance’s challenges, iterating on prototypes initially in four groups of two members each, before bringing together all of our prototypes into a single pitch, which we presented to the PMDAlliance at the conclusion of our semester. This white paper represents an archive of that process, tracing our journey alongside that of PMDAlliance.
SOURCE: TEAM MEMBER DURING INTENSIVE STUDIO WEEK
PAGE 09
DESIGN TIMELINE
JAN 15
PAGE 10
DESIGN RESEARCH
FEB 16
SENSEMAKING AND IDEATION
PAGE 11
MAR 24
PROTOTYPING AND TESTING
APR 28
DELIVERY AND PRESENTATION
PAGE 12
RESEARCH
Basing our process off of the training provided through Parsons School of Design as well as our own backgrounds in a variety of methodologies, we grounded our process in human-centered design. We worked to identify the wants and needs of the many stakeholders in the PMDAlliance ecosystem, utilizing techniques like ethnography, interviews, diary studies, stakeholder and concept mapping, and other design research techniques both to determine the needs that stakeholders were explicitly asking for, as well as to unmask unstated issues and desires. Through this process, we were able to gain an intricate understanding of the common issues that affect both PMDAlliance as well as people affected by PD.
We followed a typical design research timeline to start to tackle the challenges laid out in the PMDAlliance client brief. Starting with a convergence phases of design research, sense making, and ideation, we gathering primary and secondary research, and then pulled our insights together to begin to ideate around solutions. Next, divergence phases of prototype and testing helped us realize and evaluate the ideas we came up with, so we could eventually land on PMD+ the solution that we ultimately pitched.
CONVERGE
DIVERGE
PAGE 13
DESIGN TIMELINE
AREAS OF INQUIRY Our research strategy was informed by our reframed design challenge, which we originated as a part of our Intensive Studio Session during the first week of design research.
PAGE 14
This design challenge focuses on exploring collaboration at the intersection of life and medicine. This collaboration can only come with the involvement of both the organization and the people who create it, so our research focused in part on the different stakeholders supported by or engaged in delivering PMDAlliance’s offerings, as well as exploring the PD landscape. In the former, we looked at the experiences of people with PD, their Care Partners, Adult Children, and Care Providers (Medical Doctors), and in the latter, we looked at PMDAlliance itself, including its staff and funding, as well as its competitors and similar approaches in other disease states.
REFRAMED DESIGN CHALLENGE
How might we foster a more collaborative approach to living fully with PD?
INQUIRY LANDSCAPE
PEOPLE WITH PD
CARE PARTNERS
HELEN
DANCE FOR PD
ANNA
REBECCA
ADULT CHILDREN
PERRY
GRETCHEN
ANDREA
JACEY
JUDY
FUNDERS
DOCTORS
MARGIE
MARK
SARAH
COMPETITORS
MJ FOX FOUNDATION
ROBIN
EPDA
PARKINSON’S PARKINSONS UK FOUNDATION
DR. OSPINA
DR. REED
ANALOGOUS DISEASES
BEST BUDDIES PROGRAM
STANFORD CPSMP PROGRAM
STACEY
PAGE 15
PMD ALLIANCE
PAM
STAKEHOLDER: PERSON WITH PARKINSON’S DISEASE While the commonly perceived effects of Parkinson’s Disease are seen on a person’s exterior, like the tremor, it can also affect muscles and organs inside an body as well as manifest in non-motor symptoms. What sets Parkinson’s apart from many diseases and makes it difficult to treat is that no two cases are the same. It is a common saying in the PD ecosystem, that “if a doctor sees one person with Parkinson’s, they’ve only seen one.”
PAGE 16
Because of the complexity of this condition, People with PD require a vast network of medical professionals and personal support as they learn to live with their symptoms. PD is a condition you can live with for years, and ultimately it’s the side effects, but not the disease itself, that is the cause of death for the patient. This is why PMDAlliance works to help those living with Parkinson’s Disease and those that support them. By educating those living with it both from a medical standpoint while simultaneously helping them improve their lifestyle and personal wellbeing, the PMDAlliance enables those with PD to “learn, live more fully and connect to a support community.”
“It’s a positive attitude that helps you get through it. The symptoms will sneak up on you but you don’t have to let it control you” - P E R R Y, P E R S O N W I T H P D
DIARY STUDY A PERSON WITH PD As part of our research, we conducted two diary studies. In one, photos accompanied the written experiences and reflections of an Adult Child who spent a day supporting her father who has PD while her mother went out to run some errands. Robin shared that these photos represented how life has changed in big and small ways for her family since her father began living with his condition.
These diary studies and their accompanying pictures illustrate how what it can look like to support someone with PD and what it is really like to support with PD is highly dependent on the way the disease manifests itself.
PAGE 17
For example, while her father largely uses a walker to get around, a wheelchair is employed at the dinner table to help her father get in and out from the table easier. A picture of the bedroom was also included, and it was meant to reflect the amount of time her father spends sleeping these days. While the bedroom might look like anyone else’s, it has a very different meaning to this family because the amount of sleep carries with it a lot of worry and concern.
PAGE 18
KEY FINDINGS
1
POSITIVITY AND PEOPLE WITH PD
2
EMBRACING OPPORTUNITIES
The People with PD who we met through PMDAlliance have a deep understanding of how unique they are in the face of their disease. Many of them had a positive outlook on their situation, believing they will help the next generation with PD through their ongoing fight to treat the symptoms and search for the cause of this condition. At a point, they have accepted PD and are living peacefully with their condition.
GO ASSISTA
PMDAlliance helps to give People with PD structure and support. PMDAlliance’s members were consistently engaged in the programming and are eager to participate in more and more programming — often saying you need to experience PMDAlliance’s programs to understand how much they’re worth the effort. They’re also excited to suggest new kinds of programming to the organization, from moral support groups, volunteering with researchers, learning new techniques for coping as well as exploring experimental therapies.
DOCTORS
RESEARCH PARTICIPANTS
ME
Ecosystem Map
For a Person with PD
Health Care
MOVEMENT DISORDER SPECIALISTS
MED
OVERNMENT ANCE PROGRAMS
NETWORK OF EDICAL SUPPORT
DICAL FACILITIES
Support Systems DONORS TEACHERS
Family & Friends
PD-FOCUSED ORGANIZATIONS
PERSON WITH PD GENERAL PUBLIC
OTHERS WITH PD
ADULT CHILDREN OR FAMILY MEMBERS CARE Partner
STAKEHOLDER: CARE PARTNERS Care Partners are essential members of the PD support ecosystem, often acting as the primary caregiver to the person with PD. Typically the spouse of the individual with PD, they are commonly the primary deliverer of emotional support and stability, even if not the sole caregiver.
PAGE 20
Caring for a life partner who has PD results in a slow progression of escalating needs and worries. From the confusion of diagnosis and the initial scramble to make sure a medical plan is in place (as PD is a condition heavily dependent on medication to both control and prevent the escalation of symptoms as long as possible,) through an inevitable slow decline and into the death of the person with PD, a Care Partner is there. They experience a similar loss in what they had pictured their lives would be, facing increasing feelings of depression and guilt while their own health often declines due to stress and lack of sleep. These Care Partners seek solutions to their day-to-day problems and needs both big and small, as well as the emotional support of their families as well as others going through similar experiences.
KEY FINDINGS
1 2
CARE PARTNERS NEED TO BETTER UNDERSTAND PARKINSON’S DISORDER Care Partners help a PD patient with all of their medical and day-to-day needs. This includes a careful balance of medicines to treat the different effects of the condition, visits to dozens of specialists, emotional support, and as the condition progresses, driving, feeding, bathing, management of household and finances, among other things. The more information they have and the more resources they’re able to tap into, more efficient they can be with their time. CARE PARTNERS NEED SUPPORT TO HELP THEM PRIORITIZE THEIR OWN NEEDS Because of the heavy emotional and physical toll of caring for another person for an extended period of time, Care Partners’ quality of life is affected by disease severity, duration of care, costs, gender, as well as the lack of sleep. They’re more prone to depression than others of their same demographic group who are not dealing with caring for someone with a chronic condition.
FLOSSIE88 (USER NAME ON CARING.COM SUPPORT FORUM)
PAGE 21
“Some days I just want to get away, I feel like I have lost my identity. I’m not me anymore, I’m the wife, the carer, the event organizer, the holiday planner. Not ME”
Journey Map
Care Partner for a person with PD
STAGE
PRE-DIAGNOSIS
DIAGNOSIS
TAKING ON THE CHALLENGE
A LOSS OF SELF
WHAT THE CARE PARTNER DOES
Ralph has a gradual onset of symptoms. Agnes knows something isn’t right, and helps meet with physicians to figure out what it is. They end up visiting multiple specialists who tell them conflicting diagnoses.
The two finally visit a Movement Disorder specialist, who determines Ralph has PD. As Ralph seems paralyzed by what to do next, Agnes puts together a Care Plan, attending all of Ralph’s appointments with him. Her journey requires research and experimentation, as PD expresses itself differently in each patient and there is no one place to source all of the needed information.
Learning as she goes, Agnes explores the different ways she can to gather the necessary information to care for Ralph, as after time he is willing to do whatever he needs to in order to try and slow the progression of symptoms. At first, those symptoms are manageable, but they slowly begin to escalate in severity as Ralph loses the ability to perform the daily tasks he was always responsible for.
As the symptoms and the care that Ralph requires escalate through time, Agnes needs to make more and more personal sacrifices to continue caring for her partner. Their children want to support her, but her son in town is busy with his own young family and her other two children are too far of way to help dayto-day. Agnes stops meeting her friends, stops exercising, and no longer has the time to work part-time.
Determination Resourcefulness
Satisfaction Regret Overwhelm Depression
To learn how to adapt to the new responsibilities, and techniques to deal with the shift in the relationship with their partner and other people in their lives that are affected by this change. Help with short term problems, and long term planning.
Time for herself, the emotional and day-to-day support of family, friends, or professionals. To feel like there is a personal touch in the services they receive, or that someone is paying attention to her needs as well as those of her husband.
EMOTIONAL HIGHS AND LOWS
Fear Surprise Trepidation Denial
WHAT THE CARE PARTNER FEELS
Uncertainty Nervousness Determination
WHAT THE CARE PARTNER NEEDS
A path and reliable information, and an accurate diagnosis as early as possible.
Time to deal with the significance of the diagnosis. Information on short- and longterm planning, and to start learning who to go to for practical and emotional needs.
Agnes lives in Illinois with her husband Ralph. They are both in their late 60s at the beginning of their story. Agnes worked in an architecture office before they had their three children, when she quit her job to raise them. They are now grown and only one still lives in the same town as his parents. Agnes returned to part time work, finding herself bored after the kids had left the house. In his late 60s, Ralph started to exhibit strange symptoms that led the two on a journey to determine what was wrong, when he is diagnosed with PD. Here’s Agnes’ journey in caring for her husband:
A MOMENT OF CLARITY
FINDING SUPPORT
STABILITY THEN A SLOW DECLINE
LOSS OF ABILITY TO CARE
DEATH OF PARTNER
A moment comes, through the slow accumulation of trying experiences that causes Agnes to realize she no longer “feels like herself,” and that she has let Ralph’s PD take over her life.
Agnes has searched for support groups before, somewhat unsuccessfully. At this point she expands her search, and finally begins to participate in a group. She likes to talk through her experiences with other people who know what she is going through. Ralph understands. Sometimes he participates in the group, and sometimes encourages Agnes go out on her own.
As Ralph’s condition progresses, Agnes is more and more responsible for all household and medical tasks, with less and less time for anything else. Though Ralph encouraged her through her moment of clarity to try and regain some of her hobbies, they slip away again as he is unable to do much without her help, and as the couple is unable to afford professional care in the home.
After years, Ralph develops dementia as a part of his PD. He has more accidents and requires more constant attention than Agnes has to offer. She’s not sleeping and is constantly on call. When the demands of care become too high, Agnes realizes she needs to relocate Ralph to a senior care facility. It is close by and she still visits and cares for Ralph every day, but her life responsibilities start to decrease, though her emotional reaction is strong.
After fifteen years of having PD, Ralph finally passes away and Agnes has to deal with the financial and emotional burden of burying her partner. She is still in good health and living independently. She seeks out other Care Partners in a similar position to help or to just speak to, as she tries to adapt to her new lifestyle.
Guilty Motivated Conflicted Small ways to start integrating her needs into her life co-habitating with her partner while still being the primary provider of care. She needs meaning outside of her growing responsibilities and stresses.
Support Relief Nervousness Opportunities to take advantage of that provide emotional support, useful information. These need to be communicated clearly and scheduled conveniently due to demands of living with a person with Parkinson’s.
Overwhelmed Frustrated Tired Self-Doubt Escalating support, emotional and practical, as her burden grows and grows, and her fears around what’s coming next grow and grow as the couple’s finances dwindle.
Guilty Hopeless Depression Regret
Grief Relief
Emotional support while dealing with the emotionally wrought experience of transitioning responsibility. Coping strategies for the fear of what comes next.
An outlet for grief and new roads for helping others following the same path as she did before. Learning again how to change her relationships with their family.
STAKEHOLDER: ADULT CHILDREN
PAGE 24
While not always providing direct care to the parent with PD, Adult Children are integral players in the care ecosystem. They provide emotional support to the parent without Parkinson’s Disease, who is often consumed by the role and tasks associated with being a Care Partner. They also provide much-needed time away to one parent by helping to periodically take care of other. The level of support Adult Children provide depends on cultural expectations, socioeconomic status and relationship dynamics with their parents and siblings. The toll that PD takes on them varies by these variables as well. One item to note is that Adult Children’s role in the care ecosystem is the most likely to change, since they are the next in line to act to become the care partner for the parent with PD when the other passes. This makes them
a very interesting target audience for PMDAlliance’s program and services. There have been few studies done on the impact of a chronic parental illness, like PD, on Adult Children. Yet, the few studies that do exist show that “…the impact of chronic illness on the family is both complex and pervasive.” (1) Within the spectrum of Adult Children, younger adults experience different effects of having a parent with PD. In fact, they report that having a parent with PD has a higher impact on “…their own development, hopes and plans, their emotional well-being, attitudes and outlook on the future…” (1) Citation (1): Anette Schrag, David Morley, Niall Quinn, and Marjan Jahanshahi, “Impact of Parkinson’s disease on patients’ adolescent and a d u l t c h i l d r e n ,” P a r k i n s o n i s m a n d Related Disorders 10 (2004) 395.
“I still feel like I’m not supposed to be caring for an aging parent.” - J A C I E , A D U LT C H I L D
N
KEY FINDINGS
2
Adult Children often find themselves in a very difficult situation trying to navigate what is normal for them at their perceived stage in life, while also trying to understand that the new normal will be in their family’s dynamics. Normalcy becomes a key recurring theme for them as they make decisions about their level of engagement in supporting their parents. Not only does normalcy determine how they engage in possibly supporting their parents it helps to shape what they perceive to be their options. RELATIONSHIPS: CAN WE ALL GET ALONG? When examining the relationships between people with PD and their children, 3 types of relationships were identified: 1. Spending and enjoying time together 2. Appreciate each other and getting closer 3. Giving back care Relationships determine whether Adult Children are able to feel effective in supporting their parents. Here we see distance, due to strained relations, opening opportunities for reconciliation and closeness, where there’s an existing relationship, becoming a barrier due to prevailing expectations and power dynamics.
PAGE 25
1
NORMALCY: WHAT IS NORMAL ANYWAY?
PRE-VISIT ROBIN
k oe As e d “H
es
he
ci
e bl ta at sit er th r fa ea ps w el o H rt te ea d sw se a es er dr th ng fa tti er ge et h sh g n ni to r i r fi er he he h ts at lls le r f te er he her oth ps ot ; m el H er m use H ho ’ ts en ar
p at
ha
n bu
r’s
on
am
he at rf
nn
r fo he r
se ou
e ar
ap t en
tm
p
a re ce
tu ge
k’s
t
to
c Ja
as kf
on
ea br
ilk
th
m rs
es av Le
u Po
ut
e
us
ho
k
c Ja
to in
ls
l Te
er ht
d an d an sb d se hu es up dr es ts ak ge W d an up
ug
so
da
t Pu
ts Le
es ak W
CARE PARTNER
ip W
es iv
JANE 90 year-old mother of Robin and wife of Jack
up ts ea r H the fa
r Ar
d an
h s’ nt re pa to ur ho ed e s on res d es riv ets D g
up
ADULT CHILD
es ak W
65 year-old daughter of Jane and Jack
l
an
s
ea br
es dr
r fo
im
in
sh
go
lp
d
he
t
as kf
JACK
od fo
For PMDAlliance, this means the role that adult children play varies depending on whether they are supporting the care partner in providing care or providing direct care themselves.
is
This map was built based on a diary entry and subsequent interview with Robin. Thus, all of the activities and actions listed were outlined in the day or discussed in the interview. Jane’s experiences and emotions were mapped by analyzing Robin’s responses to questions about her actions and feelings during the interview. Jack’s experience was not mapped from an emotional standpoint, since neither the diary nor the resulting interview provided information on his thoughts and feelings. In fact, one key take-away from this research was the fact that the family is largely working off of assumptions of their father’s wants and needs.
lh al
Adult Child of a Person with PD
This moment matters because Robin’s mother is providing instructions on how to care for her father.
es ish
Journey Map
n Fi
t g as in kf ur ea br po ts op Ea st to n r he ai w lch ne ee Ja h r lls w ke Te in al e w bl g ta in at us ts e Si bl ep ta le to as ks lls al fa W d; be r on d te ck se gh ba es au dr s d ts Si ng hi tti of ge rt es po sh p ni su Fi ith w
PERSON WITH PD
, d ife sse s w re hi t d by ge up him en s ok lp w he Is ho w
92 year-old father of Robin and husband of Jane
POST-VISIT VISIT
i Jo
e th fa ns
o rt
ss ki
hi
em s” th th rm e t on fo s m in om e n o lh eb di s t va th Da nt rri f re a e o ith e pa afe on w lls r s s ad om a Ca he w e h r h of his s I’v hou e n “T it by s a vi es od go ri v m D e th fa
TV
up
ch at w
es ak W
o rt
e Th al
ic ys Ph til e un s lf rpo se u o rp st o ep ole Ke o R N
es st i sh di ap e er th th al ns ea sic er y Cl th ph fa or er h rf r oo fo ” it sd id er es sa ak sw ng m ei An d sb an ti h ha nc lu w g ts in es TV orb gg ch bs Su at a w e is o r t if h he e at ur sf ts s in o e en Jo m n ish e d d “I’ e th th in ns tv ea ch Cl at e” w ts bl r en ta he ev he at nt e t rf rre eav he l cu ts ut s to es t el gg bo w an Su sa to w lk p ta he m d e da an lik a ns em ith w tio se es ’t ds q u es n an
pi ra
l st
s ve ea
ck
ba
he
t at
t en
tm
ar
ap
er ht ug ing da m m co ro r l f fo al er sc h er nks sw ha An d t an
es iv
r Ar
ns
ai
m Re
u da
nd
lk ta
s
This moment matters because Robin did not know what to do with herself and did not feel helpful to her father.
This moment matters because this is what a really good day looks like for Robin and Jack. In what ways does a bad day differ?
For PMDAlliance, this means adult children do not understand the disease and may need assistance in deciphering family actions in order to provide the best care possible.
For PMDAlliance, this means learning what it means and looks like to be “helpful” from the adult child perspective to empower then to “help.”
For PMDAlliance, this means figuring out how to support adult children so that they will be able to have good days often.
g in ep
sle
ith w
d
ra te gh
er ht ug ain da ag ks es an ey th s s, se ile clo m , s and up g, TV es in ak om ch ut W rc at w ,b fo o TV rt ch he at at w sf to in n Jo de o st p rn ee tu asl t Re lls r a is fa fo rap ay he llw al T ha ic n e ys th Ph de n ts he s i ith ee t oe w m in G alk d ist w an p h era nc h lu l T es ica ” sh ys te ni h la Fi e P is th st pi ra h he nc lu al T !” ts ic y Ea hys ned P en he K “T re’s he “T
le ab t at
ts pu d BC an N n S de o M to t ks TV al e W n th o
ts Si
This moment matters because Robin is making assumptions about her father’s preferences and cognition.
STAKEHOLDER: PHYSICIANS
PAGE 28
Each Person with PD starts a journey when they’re diagnosed with Parkinson’s Disease. This diagnosis comes from a physician, typically a movement disorder specialist who has been consulted after a series of more generalized physicians suspect, but cannot confirm a diagnosis. And while many assume that a physician’s relationship with their patient is simple or clearcut, it is in reality tremendously complex. Due to the progressive and long-term nature of this disease, physicians form long term relationships with people they treat for PD, balancing a constantly changing physical and emotional journey for the person and their family members. Physicians play a unique role in the PD ecosystem. The nature of the condition requires patients to consult a variety of specialists, from their primary care provider to neurologists, gastroentologists, physical and occupational therapists, and many more. These networks provide medical reassurance to patients, who typically have a deep trust in that scientific provision of information and treatment. They also provide a unique opportunity for patients who are not comfortable sharing their diagnosis with friends or family, to express their concerns and seek emotional support.
“We’re [doctors are] poorly equipped to treat the elderly with chronic diseases, and that’s where these social networks come together.” DOCTOR MARIA OSPINA
KEY FINDINGS
1
FINANCIAL BURDEN Parkinson’s Disorder is an expensive disease. It not only costs the patient, but can cost those supporting them as well. During Dr. Ospina’s interview, she mentioned the monetary toll of providing care, and how there are few government programs to help support these families over such a long period of time. Encountering these financial concerns day after day wears on the physicians, who depend on organizations like PMDAlliance to help those affected by PD understand their options, taking the time that the doctors themselves don’t have, to educate.
2
STRIKING A BALANCE These physicians feel large amounts of empathy for their patients, but due to the constraints on their time placed by the current healthcare system, often don’t have room during on a typical patient visit to provide an emotional outlet. PMDAlliance provides physicians a platform to further educate People with PD and their friends and families, but also provide physicians the opportunity to focus less on the medical side of PD, and to connect more with the emotional side.
SOURCE: TEAM MEMBER , DURING INTENSIVE STUDIO WEEK
PD LANDSCAPE: COMPETITIVE MARKET After focusing on the stakeholders within the PD support ecosystem, we set out to understand the other players in the PD landscape, beginning with the competitive market. We wanted to compare PMDAlliance with similar Parkinson’s nonprofits to understand certain leverage points that may help PMDAlliance to advance and outshine its competitors in terms of its value proposition.
PAGE 30
Our research looked at four of the most well recognized Parkinson’s organizations: European Parkinson’s Disease Association (EPDA), Parkinson’s UK, Michael J. Fox Foundation, and American Parkinson Disease Association (APDA).
STRENGTHS
WEAKNESSES
OPPORTUNITIES
THREATS
Parkinson & Movement Disorder Alliance
• Programs • Personal touch • Overarching user engagement
• Funding needs to diversify • Difficulties communicating value
• Scale programs • Diversify funding • Expand outreach
• Copycat Competitors • Limited Funding
MICHAEL J. FOX FOUNDATION
• Research • Support programs • Brand recognition
• Impersonal treatment • Quality of service inconsistent
• Find a cure • Enhance brand identity on a global scale
• Similar competitors • What’s the progress on finding a cure, and what comes after it’s found?
• Research • Large network • Educational programs
• Impersonal treatment • Quality of service inconsistent
• Find a cure • Improve stakeholder collaboration
• Similar competitors • Inefficient investments into science
PMDALLIANCE
for Parkinson’s Research
AMERICAN PARKINSON DISEASE ASSOCIATION
KEY FINDINGS
1 FOUR LEADING COMPETITORS IN THE PARKINSON’S SPACE
PARKINSON’S UK Parkinson's UK is a Parkinson's research and support charity in the United Kingdom that drives better care, treatments and quality of life. Its vision and ultimate ambition is to find a cure, and improve life for everyone affected by Parkinson's. MICHAEL J FOX FOUNDATION The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson's disease through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson's today. AMERICAN PARKINSON DISEASE ASSOCIATION (APDA) The APDA is a large grassroots network dedicated to fighting Parkinson’s Disease, also working to assist the more than 1 million Americans with Parkinson’s Disease live life to the fullest in the face of this chronic, neurological disorder. APDA provides patient services and educational programs, elevates public awareness about the disease, and supports research designed to unlock the mysteries of Parkinson’s disease and ultimately put an end to this disease.
SWOT ANALYSIS
Competitive Landscape for Parkinson’s Disease
The value proposition of PMDAlliance at first glance appears to overlap with that of all other organizations in the care and support of people with the disease and their care partners. Yet, the value proposition is not identical: other organizations such as Parkinson’s UK, MJFox, APDA, EPDA, and many others focus more on scientific research. PMDAlliance supports those affected by PD now by providing programming that focuses on education and support that allows them to live fully today. BEING SMALL HELPS DIFFERENTIATION
2 3
None of the other organizations emphasize the intimacy involved in personal treatment, which is critical to PMDAlliance’s messaging. For example, Care Partner support is as important to PMDAlliance as is support for the Person with PD. This is beneficial on many levels of care. DONORS PLAY HUGE ROLE IN MANY PD NON-PROFIT ORGANIZATIONS “We fund 99% of our programs through donated income and the remaining 1% come from earned income via grants and investment.” — Paul Jackson-Clark Director of Fundraising Parkinson’s UK “The Foundation does not have an endowment so every year we start off at $0. Like most 501c3 organizations we obtain our revenue through our generous donations.” — Team Fox Michael J. Fox Foundation “The Parkinson’s Foundation is a non-profit organization that is sustained through Individual, Corporate and Foundation giving.” — Gabriel Covarrubias, Donor Services Temp, Parkinson’s Foundation
PAGE 31
EUROPEAN PARKINSON’S DISEASE ASSOCIATION The only European umbrella organization to ensure all people with PD live a full life. EPDA supports the search for a cure. As the leading voice for Parkinson’s in Europe, it provides information and resources to all Parkinson’s stakeholders, raise awareness of the disease’s complexities and impact, and advocate for concrete policy change that benefits the Parkinson’s community.
MOST OTHER FOUNDATIONS HAVE A FOCUS ON SCIENTIFIC RESEARCH
PD LANDSCAPE: ANALAGOUS DISEASES
PAGE 31
Our research efforts also encompassed analogous disease states and industries to gather inspiration and uncover insights on ways PMDAlliance can intervene with their programming efforts. This research compared the PD patient experience with that of HIV and looked into successful organizations offering similar supportive services, but in analogous conditions in order to assess gaps and opportunity areas for PMDAlliance.
KEY FINDINGS
1
EVANGELISTS IN UNKNOWN CORNERS PMDAlliance has an opportunity to engage people who don’t have, but are supporting those with PD in their programming, as supporters and advocates. Once public awareness shifts towards a greater understanding and empathy for PD, then more funding sources may open up to provide services for those who are living with the disease. FINDING FROM: BEST BUDDIES The Best Buddies mission is to help people with Intellectual and Developmental Disabilities (IDD) feel valued by society. Best Buddies is changing the perception of mental disabilities by educating the larger community about these conditions. People with IDD have been historically marginalized and socially isolated, but Best Buddies is questioning and altering that reality. They are engaging the greater community with a call to action to interact with people with IDD, participating as an advocate, friend, mentor, supporter, generally aware citizen.
2
A DEEP DESIRE
Patients are inte skills to proactiv condition. There a self-manageme been proven to b scaled. PMDAllia their messaging. take charge of th support network be highlighted as
FINDING FROM: STANFORD’S CHRONIC According to PEW resea dealing with chronic dise this, Stanford has develo Disease Self Managemen core skills to live meanin using resources, how to Self-efficacy, empowerm the program. Outcomes (improvement in pain, de efficacy, resourcefulness
erested in self-management, learning vely and independently manage their e is growing demand and need for ent model. This type of model has be successful online and can be ance has an opportunity to reframe . They’re giving people agency to heir own health and recruit a k, a powerful approach that should s a unique value proposition.
C DISEASE SELF MANAGEMENT PROGRAM arch center, 3 out of 4 adults over the age of 65 is ease (e.g. heart disease, diabetes, arthritis). To combat oped a research backed program: CPSMP - Chronic nt Program. This online program/course provides patients ngful life. Skills like problem solving, decision making, partner with HCPs, taking action for change are taught. ment, community-based health education are tenants of are measured and prove the model to be successful ependency, social/physical function, mental health, selfs).
3
PARALYSIS OF ACTION POST-DIAGNOSIS HIV as a disease state with several parallels to PD. The PD patient experience and journey is very similar to HIV, in that there are optimal stages of the journey in which to intervene with messaging, both educational and programming. PMDAlliance can test cadence of their marketing efforts to prospective people with PD by seeking knowledge from the experiences of nonprofits providing similar services for HIV patients. Perhaps outreach is currently occurring at a stage when people are not in the right mental headspace to receive programming related information, and the timing can be tuned for additional efficacy. FINDING FROM: ANALOGOUS DISEASE, HIV In HIV, there’s a Phase 2 post-diagnosis where the patient comes to grips with the disease. Patients are still largely in denial and haven’t fully integrated into the HIV community. Due to stigma and internal shame, there’s a tendency to conceal their disease at this stage. This stagnation and paralysis of action is very similar to the first 10-15 years of PD when patients don’t show many symptoms. They don’t exhibit the extreme where they completely disassociate from the disease, but still may not be ready to come to terms with dealing with it yet. As a result, there should be a gap between when PMDAlliance’s educational based messaging and program based messaging is delivered.
PAGE 32
E FOR INDEPENDENCE
Parallels in the Patient Journey HIV-PD We asked ourselves how might we enhance our understanding by studying a similar patient experience within HIV and comparing it to PD? HIV is similarly a chronic, progressive disease that leads to decline of the immune system and fatal co-morbidities. A patient’s life is never the same.
PRE DIAGNOSIS
DIAGNOSIS
LEARN
HIV
Can’t imagine a world where they end up with HIV.
Can’t imagine a world where they end up with HIV.
Read up on the internet and AIDS organizations
PD
HIV is similarly a medication dependent disease, where a daily pill is vital to maintaining a low viral load and high CD4 count.
Notice tremors, symptoms but don’t think anything of them.
Surprised, as despite the warning symptoms, they didn’t think this was a real possibility
Read up on the internet about symptoms and progression
DENIAL/REGRESSION
ACCEPTANCE
COPING/MANAGING
Dissociation, detachment from their condition. Rejection of HIV, not ready and unprepared to face the truth.
Recognition that a pill can save their life. Appreciation of the myriad of HIV resources.
Understanding correlation between adherence and viral load. Understanding that HIV doesn’t define who they are.
Stagnation, lack of desire to deal with change, new state of being, living. Paralysis and inaction.
Proactively seeking out resources, support groups, finding where they are and how to get integrated into them.
Focusing on the positive aspects (good days, support networks), living as best as possible, and taking action on managing quality of life with PD.
PD LANDSCAPE: FUNDING
PAGE 36
As a non-profit, funding is a critical element in ensuring the continuation of PMDAlliance’s programs and services. After reviewing sponsorship requests, the 2016 Annual Report and interviews with Board Members, we learned that PMDAlliance receives the lion’s share of its funding from big pharmaceutical grants. However, it does not want to be perceived as an organization funded by big pharma. PMDAlliance has struggled with diversifying its revenue streams in ways that do not dilute its messaging and value proposition. PMDAlliance desires to expand its reach through programming, but it is also concerned about its growth capacity. It appeals to sponsors through positioning for expertise, but perhaps its most valuable asset is the ability to expand and contract the care ecosystem so that it is readily at reach to people living with, or affected by, PD.
CARE ENVIRONMENT PROGRAMS SPONSORS CARE VALUE CHAIN PMDAlliance
EXPERTS
KEY FINDINGS
1
The role of experts, like doctors and specialists, is highly valued in PMDAlliance’s programming because its stakeholders value and trust the advice and opinions of medical professionals. People affected with PD often believe that they have no other place to go to get their specific questions answered because the disease manifests itself so uniquely within each person. This focus on expertise can make it feel as though interactions with “experts” is prioritized often over connection with potential funders and other stakeholders. For example, in the letters sent to potential funders, talking with exhibitors (who are normally organizations that help to fund the event) is at the bottom of the list of activities that participants can accomplish during a conference. The only thing below the exhibitions listed is time to connect with peers. Depending on the view of the potential funders, this emphasis on medical expertise might not make the case for funders to be involved. PMDAlliance should explore including the value of the funders in different ways in their funding requests. FUNDERS ARE PART OF THE CARE ECOSYSTEM PMDAlliance is able to expand and contract the care value chain in order to provide the best possible care to all those affected by PD. It seems that the care environment is the most transparent when it is in reach of the patient. PMDAlliance brings the people affected by PD within reach or little closer to those in the care value chain that can best support them. While those that are in direct orbit with the people affected by PD are largely family and medicinal and support groups, funders (like pharmaceutical companies) are secondary actors whose medicine can have a direct impact on the people affected by PD. PMDAlliance is one of the only non-profits in the PD space that showcases funders’ role in their programming for the funding, but also because they know how important managing symptoms through pharmaceutical products can be to minimizing the symptoms of the disease on the lives of those affected by PD. Their inclusion is unusual, but effective, as they better educate participants about their options.
“If we have the dollars to invest, people would be more aware of what we can do for them.” JUDY
PAGE 37
2
EXPERTS ARE OFTEN PRIORITIZED OVER CONNECTION TO SPONSORS.
STAKEHOLDER: PMDAlliance As would be expected, we spent a significant amount of time getting to know PMDAlliance as part of our design research. When we started this project, we knew that PMDAlliance was a non-profit organization that exists to transform the lives of those living with Parkinson’s Disease and those who support them. They provide this support through a variety of online and inperson programs. The main goal of PMDAlliance through their programs is to provide the means for people affected by PD to create a meaningful life, so that they are not consumed, defined, or limited by the disease.
D
O PR
FE
RE
N
S
CE
S
CT
U
CO
N
RENEW! RETREAT
SUPPORT GROUP IN A BOX
People with PD
Adult Children
LEARN. LIVE. CONNECT.
INSYNC!
CONNECT!
Support Group Leaders
STAKEHOLDERS SERVED BY PMDALLIANCE PROGRAMMING
MOVE IT!
LUNCH WITH DOCS
H2 HAPPY HOUR ONLINE GET OUT!
WEEKLY WELLNESS ONLINE
SPOTLIGHT ON MEDICATION
E N N LI N SO O ER P TH NI BO D AN
O SE N RV LIN IC E ES
PAGE 38
Care Partners
Program Map For PMDAlliance
Our exploration resulted in research into the various meanings of the word ‘personal.’ Interestingly, two of its definitions exemplify the duality of programming that PMDAlliance provides: • Knowing that people’s experiences with PD are very different, programming empowers individuals to customize the way they take control. • Understanding how PD fundamentally changes people’s lives, programming encourages individuals to connect with and support one another by sharing their private experiences of living with the disease.
Still, the programs cannot create these personal connections without the people behind PMDAlliance. The core staff, board members, and partners contribute significantly to the personal nature of the offerings, and the programs would not be what they are without them. This fact has ramifications for the way they grow and scale their offerings in the future. Yet, their current approach has lessons that can help them to continue to embody their unique identity as they look to the future.
Custom “of, affecting, or belonging to a particular person rather than to anyone else” Synonyms: direct, empirical Private “of or concerning one’s private life,relationships and emotions rather than matters connected with one’s public or professional career” Synonyms: intimate
We learned quickly that PMDAlliance’s programming sits at the intersection of medicine and life, as medicine and living life fully are intrinsically linked with PD. Because medicine and life are so intertwined, they are also highly personal. As a result, we found new meaning behind what medicine and life brings to PMDAlliance’s offerings:
LIFE The people behind the services are what makes the services, and they make it personal. MEDICINE PMDAlliance’s services are personal because PD is personal.
PAGE 39
In fact, it seems that PMDAlliance’s unique value is derived from its ability to deliver on the duality of the word personal through its services and the connections made through them.
DEFINITION OF PERSONAL
KEY FINDINGS
PAGE 40
1
2
MEDICINE IS PRESCRIPTIVE. LIFE IS DESCRIPTIVE. While medicine is integral and highly customized to treat symptoms related to PD, it does not fully address how people can and want to live with the disease. That is where descriptive expertise comes into play. PMDAlliance encourages a personal approach to support by marrying medical expertise with the reality of what it is like living with the disease. As Mark, a PMDAlliance Board Member, explains it, “The people who are really the experts are the people living with the disease...They’re the ones figuring out.” Even if medication is helping to mitigate some issues, people develop and learn life hacks from sharing how they address similar situations with one another.
3
AN ALLIANCE THAT PROMOTES YOU. Whether you are living with PD or your a partner supporting that person with your services, PMDAlliance’s programs and offerings promote you. This approach allows for value to be exchanged between different stakeholder, encouraging authentic and lasting relationships. For people with PD and their support networks, their programs focus on putting you (the person you are and want to be) above the disease. Similarly for their programming partners, PMDAlliance promotes activities or services as more than a fundraising agent, because it shares the work, reduces duplication of services, and focuses on providing those who really matter with what they need: the people who are living with or caring for a person with Parkinson’s Disease.
4
LEVERAGING MEDICINE TO ACCESS L
The current paradigm in providing supp people with PD is heavily medicinal, wit prescribing medications to manage sym encouraging education about the diseas medical books and papers. Even if PMD wants to create a paradigm shift that fo more on the day-to-day ways to live and with PD, they need access to people wh living with or affected by PD. Those acc will remain private and medical, since m people access care for PD from a docto or clinic. Thus, PMD needs to partner w medical personnel and organizations to knowledge and awareness of its program so it can reach people who will benefit f services. ENCOURAGE AMBASSADORS TO FURTHER LIVE, LEARN, CONNECT.
Since personal connections are not easi copied and duplicated like other aspects service offerings can be, PMDAlliance n to figure out ways to extend what has m programming so effective: the personal part of every program. Much of PMDAl current programming is a result of the S her staff’s network. This highly personal keeps programming real, but also acts a on size. PMDAlliance already has peopl they consider ambassadors of their prog and as they grow, they will need to find continue to grow this team, who embod personal brand and mission of PMDAllia is integral to keeping their identity as th because, as Rebecca, one of the organiz Board Members, so eloquently noted, “h personal touch means so much.”
ily s of needs made its l, people lliance’s Sarah and l approach as a check le who gram, d ways to dy the ance. This hey grow, zation’s having the
IA NC E AL L PM D
PHARMA
SUPPORT
LIFE.
port to th doctors mptoms, se through DAlliance ocuses d thrive ho are cess points most or, hospital, with o promote mming, from its
N
FU
G
IN
D
PROGRAMS
PHYSICIAN
INDEPENDENCE SPECIALIST
PERSON WITH PD
INSURANCE
HOME
FAMILY
ASSISTED LIVING
LIFE AND WORK
HOSPITALS
Ecosystem Map For PMDAlliance
KEY LEARNINGS
PAGE 4 #2 #
PMDAlliance provides support at the intersection of medicine and living life.
PMDAlliance uses personal connection, trust,and empathy to build rapport with their stakeholders.
Maximizing the support network around people living with PD will revolutionize the experience of living with PD.
PAGE 43
While people with PD suffer the symptoms of the illness, those around them are affected as well.
SENSE-MAKING
PROTAGONIS
PAGE 44
PARTICIPANT In order to strategically frame our insights, we utilized a storytelling tool known as The Four Truths. This framework helps us to unpack what makes PMDAlliance such a unique organization, as well as identify challenges it faces as it strives to achieve its mission.
MOMENT: TH
MISSION: WH
THE FOUR TRUTHS FRAMEWORK
ST: OUR STORY TODAY
What story is being told? Unique capabilities Unique attributes Unique culture
Who they are How do we advance their story How they advance ours
TS: THE AUDIENCE AND THEIR CHALLENGES
HE MOMENT IN TIME
HAT WE WANT TO ACHIEVE
What story is being told? Unique capabilities Unique attributes Unique culture
The greater purpose The quest The result
THESE FOUR ELEMENTS COMBINE TO REVEAL A META STORY. THE META STORY HELPS US UNDERSTAND WHAT’S GOING ON UNDERNEATH THE SURFACE OF AN ORGANIZATION: IT’S DNA.
A PLACE FOR RECONCILIATION
PAGE 46
THE PROTAGONIST: PMDALLIANCE Because of its ability to address both the medical and social aspects of living with PD, working with providers, pharmaceutical companies, support groups and Care Partners, we see PMDAlliance as the destination for all people living with Parkinson Disease and other movement disorders.
As part of our Four Truths journey, we landed on
EXISTING AT THE INTERSECTION OF LIFE AND MEDICINE
THE AUDIENCE: LOST CONNECTIONS When we considered the audience of this story, the people living with Parkinson’s Disease and other movement disorders, we realized that they often felt disconnected. This sentiment was not limited to People with PD but rather extended to doctors, adult children, and care partners. We began to understand that the complexity of these diseases tend blur traditional boundaries between patient and provider, parent and child, and between partner and patient.
The mission of our hero then, is to help restore these lost connections. To provide a place for reconciliation where cultures of resilience can take form and help us reconnect with our lives, with our work, with our potential.
We are living in a moment of hyper connectivity. Social media, cell phones, video chats all allow unprecedented potential to connect with one another in easy and effective ways. Organizations are now more open, more fluid. Expertise more diffuse. As a result, PMDAlliance is able to operate fluently within this hyper connected moment in time with opportunity to serve as an integral intermediary strengthening ties among the PD ecosystem.
PAGE 47
THE MISSION: RECONCILIATION
THE MOMENT: HYPERCONNECTIVITY
THE METASTORY: INTERDEPENDENCE
PAGE 48
As we tell this story, of an organization uniquely positioned at the intersection of life and medicine, to an audience who has lost connection with themselves and others, at a moment in time that emphasizes hyper connectivity, we realize that we will only complete our mission of reconciliation when everyone in the PMD ecosystem realizes how integral they are to each other’s success. When they discover that they are interdependent on one another. Interdependence, thus, conveys the DNA of PMDAlliance. It is their meta story. They are an organization that prides itself in being able to care for everyone affected by PD, even those who are not diagnosed. They recognize the importance each stakeholder has to each other which distinguishes PMDAlliance from similar organizations. The concept of interdependence then becomes the platform on which we can build an actionable brand strategy and coherently align efforts of stakeholders in the PMD ecosystem.
INTERDEPENDENCE INTERDEPENDENCE INTERDEPENDENCE
EZIO MANZINI
PAGE 49
“Resilience as a deeper expression of the human character and, at the same time, as ground for a possible reconciliation between human beings and nature, between human beings and the irreducible complexity of our world.�
KEY TAKEAWAY FROM THE MIDWAY PRESENTATION OPPORTUNITY AREAS TO BRING THIS TO LIFE
Ideation is where we truly began to put our heads together. As one of the most critical human-centered design steps, ideation reflects formation of ideas and different thought processes. We divvied up our work into four pairs and came up with a diverse range of ideas that we took into consideration as we prepared to build prototypes to test these ideas.
COMBINE ONE TAKEAWAY WITH ONE OPPORTUNITY AREA
PAGE 50
IDEATION
PMDAlliance provides a sense of belonging.
The bo PMDAllian to ch
Community is generative, it can create itself
When th member with us, t think new w
Outreach or Community Service
Focu Digital M
Advertising
Collabo
Iterative CoDesigned Model with Ambassadors
Besp Bran
Create a symbol or spokesperson
Communit with Care
Peer portal where volunteers can serve as a hotline
Programs Caregive Partners, Child
oard of nce is open hange
Spreading culture
Hotline
Belonging as a core value
he board rs engage they start king in ways.
Bespoke
How much oversight or ownership needs to happen?
“Throw the agenda out the window�
Reconciliation
The team is driven toward growth because of experiences they’ve had with one another
us on Marketing
Continued programming
Branding and messaging
Retaining key attendees and evangelists
Measurement
PMDAlliance pitch
orations
Adult Children
Volunteer network
Ambassador programming
Onboarding to programs (service design)
Website update
poke nding
Ads and Email Marketing
Application
Ambassador Incubator
A meetup model for groups in new locations
Building on existing platforms
ty building e Partners
Short programs, like teasers
International franchises
Expansion to other disease states
Build ambassador program
Expand on YouTube
combining ers, Care and Adult dren
Events and courses organized by volunteers on a digital platform
Ownership through collaboration
Self-generating community catalyzed to retain evangelists
Taking service design cues from mindfulness models
Bespoke programming, individualize a template for each user
PAGE 51
Teamwork is an essential part of PMDAlliance
PAGE 52
KEY IDEAS
1
THE MATCHMAKER PLATFORM
2
THE ONE STOP SHOP
3
A platform that would allow end users, persons with PD, to easily access and customize particular services they need given their current circumstances, needs, and expectations. This would entail a highly effective and customized experience, since PD affects everyone differently.
A service blueprint of a refined value proposition that would communicate the inclusive approach PMDAlliance attempts to foster. Rich content would suit and engage various stakeholders. Furthermore, OSS would commercialize the wide range of expertise that PMDAlliance offers, hence bringing to light the professionalism, trust, and quality of service of PMDAlliance. EVANGELISTS A network of supporters, past attendees and affiliates, that are able to effectively promote and market PMDAlliance within certain contexts (e.g. conferences, wellness classes, etc) which in turn can augment PMDAlliance’s organizational growth. Identifying and promoting evangelists could thereby enhance PMDAlliance’s marketing strategy and facilitate scaling.
WE WERE SEEKING TO IDENTIFY HOW PMDALLIANCE APPROACHES ITS PROGRAMMING, SO WE COULD CREATE VARIOUS ACCESS POINTS TO EXPAND THEIR EFFORTS.
KEY QUESTIONS DURING IDEATION
How do volunteers and ambassadors extend and promote PMDAlliance’s message to the community?
How do we create a framework for promoting interdependence among the stakeholders? PAGE 53
How can we objectively evaluate the programming efforts of PMDAlliance?
What services do we believe will enable PMDAlliance to spread a singular message to an ever-growing and diversifying community?
PROTOTYPING
PAGE 54
INSPIRATION
Following ideation, we sought to bring each of our ideas to life and test them with different stakeholders within the PMDAlliance ecosystem in an effort to validate them. We also assessed viability, feasibility, and desirability of each of our ideas. In this way, we ran through multiple versions of our prototypes as they evolved based on iterative feedback, refining our ideas as a continuous process.
FEASIBILITY -TECHNICAL-
DESIRABILITY -HUMAN-
IDEATION
SUSTAINABILITY -BUSINESS-
IMPLEMENTATION
Creating Value in the Prototyping Process
PAGE 55
INNOVATION
PAGE 56
PROTOTYPE 1 Blair and Arminas created a digital platform to provide the user with guidance to PMDAlliance’s existing resources as well as to seek additional support from medical professionals. PMDCare sorts PMDAlliance’s programming by the way in which a person is affected by PD, allowing the user to complete a profile to guide them toward individualized resources. Care Questions is a form which acts as a channel of communication between medical professionals and PMDAlliance’s end users.
PAGE 57
DESIRABILITY
SUSTAINABILITY
FEASIBILITY
As no two cases of PD are the same, no two experiences of PMDAlliance and their services are the same. This platform enables each user to easily surface the resources most relevant to their unique needs, creating a more bespoke experience.
Presuming that PMDAlliance scales and strengthens its end user acquisition strategy via this digital platform, it will increase its revenue to its existing programs, offsetting costs associated with designing and implementing this platform by the fourth year.
PMDAlliance already has the NeuroLife Online web structure that it could use as a base upon which to build this platform. Costs would include the additional development of the site, as well as staff to support it on an ongoing basis.
PAGE 58
PROTOTYPE 2 Addy and Hind created Buddy System, an app and online portal that would enable participants of PMDAlliance activities to connect to others to learn, teach, or just socialize online. It would be accessed through a mobile device or on a computer, allowing users to type or record messages to one another as well as medical specialists. The ease of this design would allow users to socialize online on a more regular basis.
PAGE 59
DESIRABILITY
SUSTAINABILITY
FEASIBILITY
This application will engage PMDAlliance’s users, creating trust and security between the organization and those participating in it, and positive reassurance for a community of people who now have an online option for making oneon-one personal connections.
The PMDAlliance team is looking to maintain the personal connection making their programs unique. Buddy System allows them to create personal connections between users online in larger numbers, efficiently utilizing current staff resources and funds.
The application would need to be designed with privacy in mind as users will be connecting over very personal issues. At first, people will be connected by members of the PMDAlliance staff, and through time, an algorithm will be built to help bring users together.
PAGE 60
PROTOTYPE 3 Johan and Kaitlyn created a platform addressing PMDAlliance’s partnership model, helping develop a more concise set of terms to help PMDAlliance track existing and seek out new partnerships, as well as creating a service model blueprint to enable stakeholders to help build these partnerships collaboratively with PMDAlliance and with one another.
PAGE 61
DESIRABILITY
SUSTAINABILITY
FEASIBILITY
This platform will help PMDAlliance better involve stakeholders across their ecosystem, determining the questions they should be asking to surface mutual needs and make decisions around programming with partners to establish interdependency.
This project would reduce the amount of time currently spent by the PMDAlliance team in establishing these rich partnerships. This would open up time in the staff’s schedule to allow them to pursue additional funding for the organization by other means.
After the costs of the initial build out, the platform would require little maintenance. It would provide users resources they need to help co-create the programs they most require. This would give them agency, empowering them to help solve their own problems.
PAGE 62
PROTOTYPE 4 Aparna and Ilya focused on the experience of families with a member newly diagnosed with PD. They created a chatbot powered by PMDAlliance, not only foster a safe space to voice fears, but also to create trust and loyalty among families with PD and PMDAlliance. The chatbot serves as a means to deliver emotional support and educational guidance at a critical and fragile phase during the user diagnosis journey.
PAGE 63
DESIRABILITY
SUSTAINABILITY
FEASIBILITY
This technology will push PMDAlliance as a trusted source of truth and support to newly diagnosed families, building brand loyalty and providing a soft intro into PMDAlliance has to offer. As such, families can seek out support when ready.
The chatbot serves as a means to deliver emotional support and guidance to families dealing with PD at a critical and fragile phase, post diagnosis. This is an audience that PMDAlliance serves, yet they do not have a dedicated program specifically for them.
A basic chatbot can be built with few resources, and if the bot is intended to scale, could provide monetization opportunities in the form of data sharing with other nonprofits or pharmaceutical companies.
PROTOTYPE TESTING We tested our concepts by conducting interviews with people from diverse backgrounds, including doctors, care partners, patients, and others. Many of these participants re directly associated with PMDAlliance, and all had consulted on the project at previous stages. Based on the feedback we received, we tweaked and validated our prototypes in three iterations, in terms of human desirability, business sustainability, and technical feasibility.
PAGE 64
Some of the constructive feedback we received during our testing phase allowed us to pivot while preserving the core elements of our prototypes.
“Having something more guided could be a great addition to help people navigate through PMDAlliance’s system to find things they’re interested in. As of now, it’s up to them to choose services that are offered.”
MARK
“I really like this. I get this.” — Related to the Support Networks & the Service Review Portal. She said that her mother, who is a Care Provider, might use it, but her father, the Person with PD, never would. That said, she, as an Adult Child, could use it to look up specialists and other types of services to support her mother. ROBIN
PAGE 65
“Awesome concept overall. The integration of database functionality and the ability to communicate in several different directions is really cool.”
PAGE ##
MARK
THE FINAL PROTOTYPE As we gathered as a team to compare the feedback and critiques on our individual prototypes, we uncovered many shared functionalities between all four. And not only did they overlap, but each still served a unique audience and purpose. We were eager to preserve these concepts as well as make them all actionable. As a result, we combined all of the four concepts into one versatile and iterative online platform titled PMD+.
PAGE 66
Our final prototype embodies the design pillars revealed through our design research. It offers three options: Care, Connect, and Partner. In Care, the end user can create a digital profile in order to surface the most relevant PMDAlliance offerings as well as to find medical specialists for a customized answer to disease-related questions. In Connect, the end user can connect to others dealing with the same concerns as they are, through an individualized buddy system. Additionally, in connect the user can receives immediate answers to his or her general inquiries through chatbot technology. In Partner, end user can utilize a new vocabulary and guide to begin partnering with others to help co-create new PD related programs.
PMD+
CARE PARTNER CONNECT
PAGE 67
WHY PMD+
STAKEHOLDERS RESEARCH
PAGE 68
OPPORTUNITY
PMD+
CAR
No two people are An online health community the same. Her designed to simplify PMDAlliance’s messaging around a new suite Create a care of services. Ultimately, it lets Find specialist people at the intersection of life Get your uniqu + medicine know that they answe belong and are important to each other’s success.
PMDAlliance Ecosystem
People with P Medical Sp
“People with long term, life threatening or chronically disabling diseases with little to no cognitive ...are are most likely to engage with online communities”
“Patients like i that is perso
THE EMERGING WORLD OF ONLINE HEALTH COMMUNITIES
DR. LEVIN, P
RE
e affected by PD re, you can:
e account. ts who care. ue questions ered.
PD, Doctors, pecialists
information onalized.” HYSICIAN
CONNECT
PARTNER
Without emotional support, some people affected by PD can retreat into depression and isolation, losing connections to others and society. Here, you can Connect with neighbors around the world who are living fully with PD.
Here, you can reconnect with formation of partnerships. Once a partner participants can directly connect with other partners in the PMDAlliance universe who are interested in creating a shared future.
People w/ PD and their families, Doctors and Medical Specialists, Support groups
Funders, Care Partners, Adult Children, Doctors, Medical Specialists, Support Groups
“I find myself getting caught up in the busy-ness of my life when I’m not there...”
“I could see myself getting depressed and frustrated with the situation.”
G R E T C H E N , A D U LT C H I L D
REBECCA, CARE PARTNER
BUSINESS MODEL CANVAS KEY PARTNERSHIPS • Program partners, including support group leaders and other programming providers • Doctors and medical specialists who diagnose and treat those with PD • Providers of elder law advice
KEY ACTIVITIES • Marketing platform to hospitals and support groups • Creating relationships with medical specialists • Web platform maintenance • Cataloging solutions
PAGE 70
• Connecting buddies
VALUE PRO
• PMD+ helps to m chaos that indivi by Parkinson’s D confronted with Not knowing wh having highly spe effective support find. Individuals c the type of speci they want throug to CARE, CONN
KEY RESOURCES • Web Platform • Social Media • Relationships with medical professionals and family-based Care Partners
COST STRUCTURE • $11,000 Start up cost for web development • • $6,000 to build a basic chatbot using ChatFuel • $1,000 ongoing costs in PMD staff time and web infrastructure support and marketing costs
OPOSITION
manage the iduals affected Disease are often after diagnosis. here to go and ecialized needs, t is difficult to can engage with ialized support gh opportunities NECT, PARTNER.
CUSTOMER RELATIONSHIPS • Care: Personalized assistance through a digital portal • Connect: Automated FAQs on PD and the building of personal connections through community • Partner: Co-creation of next generation of services for PD ecosystem
CUSTOMER SEGMENTS • People with PD • Care Partners • Adult Children • Potential and existing partners • Physicians and medical specialists
• Hospitals and medical centers • Partner websites and programming • Social Media / Newsletter • Conferences and Events
REVENUE • 5% transaction fee as partners purchase tickets • Potential to pay for access to aggregate data on the needs of the PD ecosystem • Grant funding to support events
PAGE 71
CUSTOMER CHANNELS
PAGE 72
CONCLUSION
We met PMDAlliance just over 4 months ago in January of this year, when we set out to help them explore new opportunities related to branding, scaling, and funding. We learned quickly that PMDAlliance provides services to people who care about PD by connecting them with truly empathic resources and support that allow them to be resilient in the face of the disease. Through our research, we learned that they do this through consciously thinking about and listening to the individuals who have PD and care about people with PD. As we tried to deeply understand the organization and the people that they serve, we realized that we needed a strategy to figure out how to best support them in their requests to us. The complexity of PD combined with the intricate nature of PD care delivery and management forced us to reframe the way we were approaching the task to “How might we foster a more collaborative approach to living fully with PD?” That question not only guided our research strategy, but also our approach to determining a solution. Our research unveiled a series of informative findings. They included the fact that PMDAlliance provides support at the intersection of medicine and living life; something that most other non-profits in the PD space do not provide. Personal connections, trust, and empathy are the key ways in which PMDAlliance builds rapport with stakeholders, which also allows them to design programming that meets the needs of the people they serve. PD is a progressive, degenerative disease that affects each person differently. While people with PD suffer the symptoms of the illness, we learned quickly that those around them are affected as well. The
domino effect of PD varies by person and by the role in which they play in the care ecosystem. For example, we met care partners who were disconnected from their identities outside of caring for their spouses. We heard adult children share that they struggled to regain a sense of normalcy. We also found doctors who felt disconnected from their efficacy of their work. It also became clear that people are faced with many issues related to PD that are real, but that people often cannot see. All of this led us to understand that maximizing the support network around the people with PD could revolutionize the experience of living with PD. We created PMD+ to help to manage the confusion and disconnection that individuals affected by PD are often confronted with after diagnosis. Not knowing where to go and having highly specialized needs, effective support for all members of the care ecosystem is difficult to find. Enter PMDAlliance. They already provide services and resources to allow people to live their fullest life possible through education and personal connection. Adding PMD+ allows individuals to engage with the type of specialized support they want where ever they are in the country through opportunities to CARE, CONNECT, and/or PARTNER. We see PMD+ as not only an online health community, but the stepping stone through which PMAlliance can repackage and align all of its offerings. We believe that PMD+ supports and further enhances PMDAlliance’s situation at the unique intersection of life and medicine to create this place of reconciliation, an ecosystem of interdependence where people understand their roles and depend on one another.
PAGE 73
BIBLIOGRAPHY Abrahms, Sally. “Parents Aging, Squabbling Adult Siblings Need Elder Mediation, Conflict” AARP. September 20, 2010. Accessed May 09, 2018. https://www.aarp.org/relationships/ family/info-09-2010/elder_mediation.html.
PAGE 74
“Aging Parents and Elder Care (Senior Care).” What Is Medicare? Medicare Benefits. Accessed May 09, 2018. http://www.aging-parents-and-elder-care.com/ “American Parkinson’s Disease Association.” APDA. Accessed May 09, 2018. https://www. apdaparkinson.org/. Association, European Parkinson’s Disease. “Home.” Genetic Testing | European Parkinson’s Disease Association. Accessed May 09, 2018. http://www.epda.eu.com/. Blanchard, Amy, Jennifer Hodgson, Angela Lamson, and David Dosser. “Lived Experiences of Adult Children Who Have a Parent Diagnosed with Parkinsons Disease.” NSUWorks. Accessed May 09, 2018. https://nsuworks.nova.edu/tqr/vol14/iss1/4/. “Enter Neuro Life Online™ Health & Wellness Center for Movement Disorders.” PMDAlliance. Accessed May 09, 2018. https://www.pmdalliance.org/. “JF&CS Blog.” Jewish Family & Children’s Service. Accessed May 09, 2018. https://www. jfcsboston.org/Blog/PostId/297/support-group-for-adult-children-of-people-with-parkinsons-disease. Habermann, Barbara, Dana Hines, and Linda Lindsey Davis. Advances in Pediatrics. 2013. Accessed May 09, 2018. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3682660/. Tod, Angela Mary, Fiona KennedyAmanda-Jayne Stocks, Ann McDonnell, Bhanu Ramaswamy, Brendan Wood, and Malcolm Whitfield. “Good-quality Social Care for People with Parkinson’s Disease: A Qualitative Study.” BMJ Open. February 01, 2016. Accessed May 09, 2018. http://bmjopen.bmj.com/content/6/2/e006813.
“HOME › Press Releases › Parkinson’s Disease Treatment Market worth 5.69 Billion USD by 2022.” Market Research Firm. Accessed May 09, 2018. https://www.marketsandmarkets.com/PressReleases/parkinson-disease-treatment.asp. Jacobs, Barry J. “Managing Expectations between Adult Siblings Caregivers.” AARP. Accessed May 09, 2018. https://www.aarp.org/caregiving/life-balance/info-2017/challenges-adult-children-parents-bjj.html.
“The Michael J. Fox Foundation for Parkinson’s Research.” The Michael J. Fox Foundation for Parkinson’s Research | Parkinson’s Disease. Accessed May 09, 2018. https://www. michaeljfox.org/. Morley, David, Caroline Selai, Anette Schrag, Marjan Jahanshahi, and Alan Thompson. Advances in Pediatrics. 2011. Accessed May 09, 2018. https://www.ncbi.nlm.nih.gov/pmc/ articles/PMC3135087/. “Our Vision, Mission and Values.” Parkinson’s UK. Accessed May 09, 2018. https://www. parkinsons.org.uk/about-us/our-vision-mission-and-values. “Parkinson’s Support Group.” Senior Care: Housing, Home Care, Community, Articles. Accessed May 09, 2018. https://www.caring.com/support-groups/parkinsons. “
Self-care for Caregivers.” ParkinsonsDisease.net. Accessed May 09, 2018. https://parkinsonsdisease.net/topic/self-care-for-caregivers/.
PAGE 75
Johnny J, DeeAnna, and Ahmijoy. “The Community for Caregivers | Caring for Aging Parents.” Legal Documents To Make Healthcare Decisions for Elderly Parents - AgingCare. com. Accessed May 09, 2018. https://www.agingcare.com/caregiver-forum.
PAGE 76
APPENDIX
PEOPLE WITH PARKINSON’S DISEASE The aim of this research was to use human centered design to help PMDAlliance take a more collaborative approach to better enhance the lives of People with Parkinson’s Disease. RESEARCH OBJECTIVES • How can PMDAlliance become the number one organization helping People with PD and provide them with the tools they need to have a positive balance between medicine and life?
• How do we find and communicate new daily habits that might help People with PD accept their situation and live much more comfortably? EXECUTIVE SUMMARY We met with participants in the programs of PMDAlliance, to understand more deeply the impact of services provided for their needs.
We found out that People with PD were well educated in the literature around their disease, and were focused on retrieving any information out there that could make a difference in their lives. We also discovered how they stay motivated, how they find new opportunities, and how they’re already using their existing knowledge to help others in their same condition. THEMES Motivation People with PD in PMDAlliance have a deep understanding of how unique they are in how they experience this disease. Many of them seem to be more optimistic than expected, viewing the positive side of the situation. They also were interested in helping the next generation of those who will live
with PD through research, both in treatments and in a cure. Opportunity PMDAlliance gives People with PD the necessary structure they require in the face of living the rest of their life with this disease. The members were interested in continuing to build on the programs offered by PMDAlliance, including adding moral support groups, volunteering more with researchers, learning new techniques to treat the disease and live their lives despite the complications tit creates for them, and they were interested in constantly learning about new therapies. Life outside of PD People with PD have an amazing resiliency and ability to adapt to the challenges they face. They are full of positive energy. For example, Perry become an artist, designing rock gardens with his free time.
PAGE 77
• What do we need to understand about the needs of People with PD to help us assist PMDAlliance in designing programs for them?
By digging deep into the practical and emotional needs of the PMDAlliance participants, hearing their motivations, their stories, and their thoughts, we could see that the journey they went through was tough but that successfully coping with their struggles gave them pride.
CARE PARTNERS This research was performed in response to a inquiry from the PMD Alliance as they grow and expand their nonprofit organization. As Care Partners have been a major part of the audience they are serving in the Tucson, Arizona area, PMD Alliance is interested in looking further into the needs surrounding this audience and determining understanding how these needs should be prioritized in comparison to other stakeholders in the PMD Alliance ecosystem, both in deepening existing relationships and in expansion geographically.
PAGE 78
RESEARCH OBJECTIVES • What needs for Care Partners is PMD Alliance already serving, and what needs have not yet been met? • What makes the needs of Care Partners unique among other stakeholders PMD Alliance is trying to serve? EXECUTIVE SUMMARY In many ways, Care Partners share the same dramatic changes in lifestyle as the patients they support who have PD. They shoulder the burden of caring for a person while sacrificing many of their own goals and personal needs in order to do so. Their quality of life and quite often their outlook decreases over the long period of time when they are responsible for their partner, which leaves them in consistent
need of emotional and practical support not just for the needs of their partner, but for their own unique needs. KEY TAKEAWAYS Caring for a life partner who has PD is a slow progression of escalating needs and worries. From the confusion of diagnosis and the initial scramble to make sure a medical plan is in place (as PD is a heavily medication-dependent condition,) to both control and prevent the escalation of symptoms as long as possible, through an inevitable slow decline and into the death of the person with PD, a Care Partner is there. They experience a similar loss in what they had pictured their lives would be, facing increasing feelings of depression and guilt while their own health often declines due to stress and lack of sleep. These Care Partners seek solutions to their dayto-day problems and needs both big and small, as well as the emotional support of their families as well as others going through similar experiences. Currently, the PMD Alliance offers several programs targeted either specifically for this group, or for them in conjunction with their partner with PD. These programs have been generally successful and rewarding for the nonprofit, who seek to determine what the next
steps forward are for serving this audience. THEMES Care Partners need to better understand Parkinson’s Disorder Care Partners help a PD patient with all of their medical and day-today needs. This includes a careful balance of medicines to treat the different effects of the condition, visits to dozens of specialists, emotional support, and as the condition progresses, driving, feeding, bathing, management of household and finances, among other things. The more information they have and the more resources they’re able to tap into to gather that information more readily, the more efficient they can be with their time. Care Partners need support to help them prioritize their own needs, enabling them to better support their partners. Because of the heavy emotional and physical toll of caring for another person for an extended period of time, Care Partner’s quality of life is affected by disease severity, duration of care, costs, gender, as well as the lack of sleep. They’re more prone to depression than others of their same demographic group who are not dealing with caring for a chronic condition.
ADULT CHILDREN PMDAlliance has been in existence since October 2015, and has been actively providing services since January 2016. They offer approximately 12 conferences per year (including their retreats) and an additional 36 social and community building events each year, focused primarily in the west/southwest region of the U.S. In our initial interviews with Sarah, the Executive Director of PMDAlliance, our team determined that the Adult Children of people with Parkinson’s Disease were a key stakeholder to engage and learn from. RESEARCH OBJECTIVES
• Given their difficulties involving this audience to date, how can PMDAlliance adapt their programs to best serve Adult Children? EXECUTIVE SUMMARY In studying the issue of PD from the Adult Child’s perspective, we began to gain a deeper understanding of how complex this issue truly was. The Person with PD needs to face the remaining decades of their life with dignity, knowing their condition will progressively worsen. Their partner gives up the remainder of their life to try to meet the basic
KEY TAKEAWAYS Throughout the interviews we saw two recurring themes emerge: 1. There are many themes to be interrelated and consistent between different stakeholders in the PD ecosystem. 2. Adult Children themselves are on a journey. Where they were in that journey makes some individuals more ready for intervention than others. Both themes appeared critical regardless of the stage of life the Adult Children were in or regardless of the stage of the disease that the person with PD was currently in. As Adult Children try to support their parent with PD or relate to them in ‘the new normal,’ they must also navigate their relationship with the care partner, typically their other parent, and prevailing family dynamic in order to feel effective in their contributions. Furthermore, they were also in need of support. However, Adult Children seem to be more interested in support from peer-to-peer communities despite also having access to a broader spectrum of support (siblings,
spouses) than do Care Partners. THEMES Normalcy: What’s normal anyway? Here we begin to see signs of adult children considering not only what should be normal for them at their perceived stage in life, we also see them begin to consider what the new normal will be in their family dynamic. Normalcy becomes a key recurring theme for them as they make decisions about their level of engagement in supporting their parents. Not only does normalcy determine how they engage in possibly supporting their parents it helps to shape what they perceive to be their options. Relationships: Can we all get along? When examining the relationships between people with PD and their children, three types of relationships were identified: 1. Spending and enjoying time together 2. Appreciating each other and getting closer 3. Give back care Relationships determine whether Adult Children are able to feel effective in supporting their parents. Here we see distance, due to strained relations, opening opportunities for reconciliation and closeness, where there’s an existing relationship, becoming a barrier due to prevailing expectations and power dynamics.
PAGE 79
• Over the two years of its existence, the organization has undergone a significant amount of growth. How can PMDAlliance bring in Adult Children to their programming to help sustain that momentum?
needs of their loved one thus taking on the full time role of the Care Partner without any real possibility of relief. This means the Adult Child must leave their understanding of what’s normal behind in order to support the Care Partner but, due to strained relationships and ongoing life and family dynamics, find themselves unsure of how to do so.
PHYSICIANS Our research was conducted to help build the PMDAlliance build their brand, and expand the organization. Over the past few years the PMDAlliance has partnered with dozens of physicians, who help provide much of the essential content for their programming. In our discussions with these physicians, we focused on how we can help them to work with PMDAlliance to co-create programs which fill the needs that doctors cannot fill themselves. RESEARCH OBJECTIVES
PAGE 80
• How can we use the insights of a Physician to build a better business strategy for the PMD alliance? • How can we maximize funding to build a better brand? What barriers get in the way? EXECUTIVE SUMMARY While similar organizations focus on the science behind Parkinson’s Disease, PMDAlliance sets itself apart by working with physicians
to address the medical needs of the condition while simultaneously focusing on creating a healthier and happier lifestyle for those affected by PD as well as their loved ones. KEY TAKEAWAYS Physicians play a unique role in the PD ecosystem. The nature of the condition requires patients to consult a variety of specialists, from their primary care provider to neurologists, gerontologists, physical and occupational therapists, and many more. These networks provide medical reassurance to patients, who typically have a deep trust in that scientific provision of information and treatment. They also provide a unique opportunity for patients who are not comfortable sharing their diagnosis with friends or family, to express their concerns and seek emotional support. THEMES Financial Burden Parkinson’s Disorder is an expensive disease. It not only costs the patient, but can cost those supporting them
as well. During Dr. Ospina’s interview, she mentioned the monetary toll of providing care, and how there are few government programs to help support these families over such a long period of time. Encountering these financial concerns day after day wears on the physicians, who depend on organizations like PMDAlliance to help those affected by PD understand their options, taking the time that the doctors themselves don’t have, to educate. Striking a Balance These physicians feel large amounts of empathy for their patients, but due to the constraints on their time placed by the current healthcare system often don’t have room during on a typical patient visit to provide an emotional outlet. PMDAlliance provides physicians a platform for further educate People with PD and their friends and families, but also provide physicians the opportunity to focus less on the medical side of PD, and to connect more with the emotional side.
ANALAGOUS DISEASES This research encompasses analogous disease states and industries to gather inspiration and uncover insights on ways PMDAlliance can intervene with their programming efforts. This research compared the PD patient experience with that of HIV and looked into successful organizations similar to PMDAlliance but in analogous conditions in order to assess gaps and opportunity areas for PMDAlliance. OBJECTIVES • What might we learn from the patient experience in an analogous disease state like HIV?
• What organizations offer similar services in analogous disease states that have successfully scaled their programming (i.e. have an online component)? KEY TAKEAWAYS Evangelists, supporters, advocates can be found in many corners. There is a large pool of citizens unaware of PD, what it is and how they can help. They can be recruited into PMDAlliance’s fold but first need to be given an opportunity to care about the mission, purpose, and steps on how best to get involved. There is growing demand from
Post diagnosis (ph 1) and latter points of the PD journey (ph 3) are prime points of intervention for PMDAlliance to educate and provide meaningful services. They represent emotional inflections points when patients are in the right frame of mind to listen, learn, and seek support (more so than other parts of the journey) THEMES Evangelists in Unknown Corners The Best Buddies mission is to help people with Intellectual and Developmental Disabilities (IDD) feel valued by society. Best Buddies is changing the perception of mental disabilities by educating the larger community about mental disabilities. People with IDD have been historically marginalized and socially isolated, but Best Buddies is questioning and altering that reality. They are engaging the greater community with a call to action to interact with people with IDD, participating as an advocate, friend, mentor, supporter, generally aware citizen.
A Deep Desire for Independence According to PEW research center, 3 out of 4 adults over the age of 65 is dealing with chronic disease (e.g. heart disease, diabetes, arthritis). To combat this, Stanford has developed a research backed program: CPSMP - Chronic Disease Self Management Program. This online program provides patients core skills to live meaningful life, like problem solving, decision making, using resources, taking action for change. Self-efficacy, empowerment, and community-based health education are tenants of the program. Outcomes are measured and prove the model to be successful (improvement in pain, dependency, social/physical function, mental health, self-efficacy, resourcefulness). Paralysis of action postdiagnosis In HIV, there’s a phase 2 post-diagnosis coming to grips with disease. Patients are still largely in denial and haven’t fully integrated into the HIV community. Due to stigma and internal shame, there’s a tendency to conceal their disease at this stage. This stagnation and paralysis of action is very similar to the first 10-15 years of PD when patients don’t show many symptoms. They don’t exhibit the extreme where they completely disassociate from the disease, but still may not be ready to come to terms with dealing with it yet. As a result, there should be a gap between when PMDAlliance’s educational based messaging and program based messaging is delivered.
PAGE 81
• What might we learn from a successful patient foundation in an analogous disease state like intellectual or developmental disabilities?
chronic disease patients to acquire the tools, knowledge, skillset to be self-sufficient in managing their disease. PMDAlliance can emphasize these traits as they are part of existing programming. They can also start to measure the effect of their programs pre and post to develop evidence that their programs are truly transformational.
COMPETITIVE MARKET By looking at the competitive landscape, we juxtaposed PMDAlliance with similar Parkinson’s nonprofits, and as a result recognized certain leverage points that may help PMDAlliance to advance and outshine its competitors in terms of value proposition. OBJECTIVES • What are PMDAlliance’s advantages? • What are the differences and similarities between PMDAlliance and other similar organizations?
PAGE 82
EXECUTIVE SUMMARY The merits of large foundations include that they’re competitive, well-funded and well-branded, have knowledge accumulated with experience over time. But despite its relative youth and small size, PMDAlliance has certain advantages over large nonprofits. It’s small, which means it’s easier to maintain a high level of consistency in quality and that it has agility, room to take risks for growth. It specializes in community, connecting people
together. And it is inclusive, accounting for other movement disorders in addition to Parkinson’s Disease. KEY TAKEAWAYS The value proposition of PMDAlliance overlaps with that of all other organizations in care and support of People with PD and their Care Partners. However, their value proposition isn’t identical to their competitors. Various organizations such as Parkinson’s UK, MJFox, APDA, EPDA, Davis Phinney, etc. are more focused on scientific research, allowing PMDAlliance to take the lead on creative care and communication. None of these other organizations emphasize intimate and personal treatment, which is critical to PMDAlliance’s value. For example, Care Partner support is as important to PMDAlliance as support for those with the disease. VALUE PROPOSITIONS PMDAlliance PMDAlliance’s value proposition is to help people with PD and other movement disorders live more fully,
and to support the ecosystems surrounding those people as well. Their channels are currently mostly in Arizona but are rapidly expanding across the country. They also have online support. Their funding is primarily through pharmaceutical grants, as well as individual donations. European Parkinson’s Disease Association EPDA’s value proposition is to ensure all people with PD live a full life, while supporting the search for a cure. The main channels they function in are physical, distributed across Europe. They are also partially funded through pharma grants, but around 70% of their funds come from membership fees, sponsorships, donations. Parkinson’s UK Parkinson’s UK has a value proposition of improving life for everyone affected by PD, and ultimately find a cure. They have a large focus on research. Their main channel is in a physical presence throughout the United Kingdom, but also maintains an online discussion forum. Their primary funding comes front donated income and grants.
FUNDERS PMDAlliance receives the lion’s share of its funding from big pharma grants. PMD does not want to be perceived as the organization funded by big pharma. PMD Alliance has struggled with diversifying its revenue streams in ways that don’t dilute its messaging and value proposition. OBJECTIVES • How does PMD solicits donors? • How does PMD communicate its story to its resource partners?
EXECUTIVE SUMMARY PMDAlliance desires to expand its reach through programming but it is also concerned about its growth capacity. The organization appeals to sponsors by positioning itself as being able to distribute critical information to an invested audience, but perhaps its most valuable asset is the ability to expand the care ecosystem so that it is readily at reach to people living with PD. We discovered that PMD communicates value to prospective sponsors by featuring specialists, promoting expertise, and emphasizing incentives that advertise and promote the prospective sponsor to impacted audiences.
Evangelists, supporters, and advocates can be found in many corners. There is a large pool of citizens unaware of PD, what it is, and how they can help. They can be recruited into PMDAlliance’s fold but first need to be given an opportunity to care about the mission, purpose, and steps on how best to get involved. There is growing demand from chronic disease patients to acquire the tools, knowledge, skillset to be self-sufficient in managing their disease. PMDAlliance can emphasize these traits as they are part of existing programming. They can also start to measure the effect of their programs pre and post to develop evidence that their programs are truly transformational. Post diagnosis (ph 1) and latter points of the PD journey (ph 3) are prime points of intervention for PMDAlliance to educate and provide meaningful services. They represent emotional inflections points when patients are in the right frame of mind to listen, learn, and seek support (more so than other parts of the journey.) THEMES Growth: Bringing the system of care into focus PMDAlliance views growth in terms of expansion of its programming and reach. They want to bring more resources into their orbit.
Experts are often prioritized over connection in messaging to sponsors Meeting with “experts” is prioritized often over connection. For example, In the visual hierarchy represented by bullet points, “learn[ing] from medical experts” is prioritized over connecting. “The agenda for the two days includes presentation by two movement disorder specialists, a neuropsychologist, an elder law attorney, an opportunity to talk with exhibitors, and time to meet each other and develop their own supportive network.” How might the two messages be better interwoven? The Care Ecosystem PMD is able to expand and contract the care value chain at the person living with PD’s prompting. It seems that the care environment becomes more transparent and is within reach of the patient. PMD brings the person with PD within reach or little closer to the care value chain ecosystem. It turns a linear system into a planetary system with the person living with PD at the center and the care person as the transmitter or agent. We imagine an expanding and contracting universe, breathing in synchronicity.
PAGE 83
• Discover insights that may inform opportunities to cultivate new relationships with a variety of prospective resource partners.
KEY TAKEAWAYS
PMDALLIANCE We believe that working across systems, PMDAlliance is best positioned to enable people with PD to live a new, enhanced life at the intersection of life and medicine. Our team has spent the last month and a half conducting research to explore the following research statement: how might we foster a more collaborative approach to living fully with PD? OBJECTIVES
PAGE 84
• Who are the different people that make up the PMDAlliance, and how do they interact with one another to deliver programs and services? • How do the interactions of the PMD or individuals themselves, affect, positively or negatively, the experiences of the individuals participating in the products and services? • What is the core value that these people provide, if any, to the products and services that PMDAlliance put out, and how might that be scaled? EXECUTIVE SUMMARY Our research question focused on exploring collaboration at the intersection of life and medicine. Collaboration is something that only people and organizations can do, so much of our research has focused on the different stakeholders supported by or engaged in delivering
PMDAlliance’s offerings. Throughout our research, people, from those with PD to those who partner with PMDAlliance, consistently spoke highly of the programming due to the personal connections they were able to elicit. This introduced new questions to our team: how are they encouraging these personal connections through their programming, and how might they continue to as they look to grow and scale their offerings across the country? In digging into these two questions, we learned that PMDAlliance’s programming sits at the intersection of medicine and life because medicine and living life fully are intrinsically linked in PD. Because medicine and life are so intertwined, they are also highly personal. As a result, we saw new meaning behind what medicine and life brings to PMDAlliance’s offerings: 1. Medicine: PMDAlliance’s services are personal because PD is personal. 2. Life: The people behind the services are what makes the services, and they make it personal. This exploration resulted in research into the various meanings of the word ‘personal.’ Interestingly, two of its definitions exemplify the duality of programming that PMDAlliance provides: 1. Knowing that people’s experiences with PD are very different, programming empow-
ers individuals to customize the way they take control of their unique circumstances; and 2. Understanding how PD fundamentally changes people’s lives, programming encourages individuals to connect with and support one another by sharing their private experiences of living with the disease. In fact, it seems that PMDAlliance’s unique value is derived from its ability to deliver on the duality of the word personal through its services and the connections made through them. Still, the programs cannot create these personal connections without the people behind PMDAlliance. The core staff, board members, and partners contribute significantly to the personal nature of the offerings, and the programs would not be what they are without them. This fact has ramifications for the way they grow and scale their offerings in the future. Yet, their current approach has lessons that can help them to continue to embody their unique identity as they look to the future. THEMES Medicine is Prescriptive. Life is Descriptive. While medicine is integral and highly customized to maintain symptoms related to PD, it does not fully address how people can
and want to live with the disease. That is where descriptive expertise comes into play. PMDAlliance encourages a personal approach to support by marrying medical expertise with the reality of what it is like living with the disease. As Mark explains it, “The people who are really the experts are the people living with the disease…They’re the ones figuring out..” One example he shared was that often times getting out of bed can be difficult. Even if medication is helping to mitigate some issues, people learn and develop life hacks from sharing a description of how they address similar situations with one another.
Whether you are living with PD or a partner helping to deliver services, PMDAlliance’s programs and offerings promote you. This approach allows for value to be exchanged, which encourages authentic and lasting relationships and partnerships. For people with PD or their support networks, their programs focus on putting you (the person you are and want to be) above the disease. Their services, like happy hours, focus on you as a person, not you as a patient or care partner. Similarly for partners, PMD promotes activities or services, even as a fundraising agent, because it shares the work,
Partner with Medicine to Access Life. The current paradigm in providing support to people with PD is heavily medicinal, with doctors prescribing medicines to manage symptoms and encouraging education about the disease through medical books and papers. Even if PMDAlliance wants to create a paradigm shift that focuses more on the day-to-day ways to live and thrive with PD, they need access to people who are living with or affected by PD. Those access points will remain private and medicinal, since most people access care for their PD from a doctor, hospital, or clinic. Thus, PMD needs to partner with medical personnel and organizations to promote knowledge and awareness of its programming, so it can reach the people that will benefit from its services. Uncertainty and Fear is at the Core of All PMD Does. PMDAlliance addresses uncertainty and fear on two levels, by helping those who experience it related to PD through knowledge-sharing and other programming and by facing it internally as it continues
to explore its brand and business model. Since PMD staff, board members, and partners can directly connect with these feelings in two distinct, yet very private ways, it delivers value through authenticity and experience that is not easily replicated. Leverage Ambassadors to Further Live, Learn, Connect. Since personal connections are not easily copied and duplicated like other aspects of service offerings can be, PMDAlliance needs to figure out ways to extend what has made its programming so effective: the personal, people part of every program. Much of PMDAlliance’s current programming is a result of Sarah and her staff’s network. This highly personal approach keeps programming real, but also acts as a check on fit. PMD already has people who they consider ambassadors of their program, and as they grow, they will need to find ways to continue to grow their team of ambassadors who embody the personal brand and mission of PMD. This is integral to keeping their identity as they grow, because, as Rebecca so eloquently noted, “having the personal touch means so much.”
PAGE 85
An Alliance that Promotes YOU.
reduces duplication, and focuses on providing those who really matter with what they need: the people who are living with PD or caring for a person with PD.
“We try to build each other up. The positive attitude is what helped you to meet. You will get more of the symptoms sneaking up on you, but never let them control.”
“I knew I couldn’t cure Parkinson’s and it wasn’t going away so I had to find a wa to make it a positive experience.” – J U D Y,
P M D A L L I A N C E S TA
P E R R Y, A P E R S O N W I T H P D
There were times that I would just sob and cry and say I can’t do it, I can’t do it. But on the other hand, I didn’t want anyone else to do it! I wanted to take care of him.
“The of th by c the c erwi welf
“…How do you jus life and deal with REBECCA, PMDALL
HELEN, A FORMER CARE PARTNER
“Take this drug and come back in six months… very little information is given unless you talk to a movement disorder doctor… this can be frightening…” MARK, PMDALLIANCE BOARD MEMBER
The greate respite, ass
“Support groups act as lifeblood for people with Parkinson disease and their care partners...These dedicated individuals became group leaders because they saw a need and took action, not because they possessed expertise in PD or group leadership skills.”
d y, ay e
AFF
ese caregivers soften the impact he disease on societal resources, covering a considerable part of cost of activities that would othise be performed by health and fare workers” STUDY ON “THE QUALITY OF LIFE OF CAREGIVERS IN PARKINSON’S DISEASE”
st get through h the day to day…” IANCE BOARD MEMBER
est need is about the sistance at home. P A M , A D U LT C H I L D
SARAH, PMDALLIANCE FOUNDER
“The Renew Retreat. It provided me the most respite time since last year’s retreat. I participated in the intimacy break out session. Tell Judy I rearranged the living room for more hand holding. Realized when I got in the car to head home that I did not chew the inside of my mouth for 2 days! Also, the impact of seeing my husband exit the last session looking for me brought tears to my eyes. Throughout it all - the love comes through. Looking forward to next year.” PMD ALLIANCE SURVEY RESPONDENT