A holistic approach to medication adherence using online social support and gameification. SARAH GORMAN
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CARNEGIE MELLON SCHOOL OF DESIGN
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DESIGNING SYSTEMS FOR IMPROVED CARE
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SPRING 2013
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Sarah Gorman Carnegie Mellon University School of Design, Senior Project Designing Systems for Improved Care Spring 2013 Advisor Stacie Rohrbach In conjunction with Zachary Marcum Assistant Professor of Medicine University of Pittsburgh 2
TABLE OF CONTENTS
Research Understanding the problem, finding opportunities
Strategy Methods of exploration and ideation
Iteration Sketching concepts, creating solutions
Solution Final deliverables of “The Orchard� 3
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Research Understanding the problem, finding opportunities 5
Research
The Challenge What are the issues associated with medication adherence? “Medication adherence–the extent to which a person takes medications according to the recommendations from a health care provider–plays a major role in the health and wellbeing of prescribed users. Unfortunately, few patients recognize the catastrophic events that can happen when they fail to fill, initiate, continue, and take a perscription as instructed. The challenge is further exasperated when several health care providers and medications are needed to ensure the effective care of individuals as the drugs must maintain a balance, which requires the clear and frequent communication among caregivers. Unfortunately, although numerous people are exploring ways to ensure the proper care of medication subscribers, a clearly effective system that meets the needs and desires of everyone involved in the care process has yet to be designed. Thus, this studio course will focus on addressing the systemic challenges that arise when several medical professionals are involved in the care of an individual, such as transferring care from one physician to another and maintaining a healthy mix of medications when multiple perscriptions are involved.” Stacie Rohrbach
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Research
Dissecting the Issue Why aren’t people taking their medications? The main issues of medication non-adherence begin with the fact that in-patient and out-patient systems don’t communicate with one another. Patients are often passed from specialist to specialist without consistency in their care and perscriptions. How a perscription travels A doctor electronically sends patient information to the pharmacy using universal language. The patient also has the option to recieve a hard copy. Insurance is a large factor but physcians do not know a patient’s insurance policy when prescribing drugs.
Barriers The current layout of medication information is not digestable or relevant to patients. Pharmacists and physicians are extremely busy and their schedules cannot be disrupted to combat this issue. Every patient is different and there is little time for personalized counseling and education about their perscriptions. Furthermore, many of these patients have asymptomatic conditions which leads to forgetfulness, the number one reason for medication non-adherence and something that is outside of a professional’s control.
PRIMARY ISSUE
SECONDARY ISSUE
Patient does not pick up perscribed medications from the pharmacy
Patient fills initial perscription but does not have it refilled.
TERTIARY ISSUE Patient stops taking medications over time.
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Research
Hierarchy of Medication Adherence
HEALTH BENEFITS
IMMEDIATE EFFECTS
SIDE EFFECTS
LONG-TERM EFFECTS
COST
CONVENIENCE
SIDE EFFECTS
INSURANCE POLICY
TIME
A patient’s adherence to their medication is dependent on a variety of factors. It begins with the immediate effects of the medication, which includes any fast-acting side effects of the prescription. If a patient can continue on their medication path past these, then the long-term effects, cost, and convenience become key. If the long-term effects 8
LOCATION
do not include tangible health benefits and do include unwanted long-term side effects, adherence is often lost. Adherence also gets lost with immediate cost and more overarching factors like insurance policies. Lastly, convenience plays a role, as a patient’s schedule and ability to get to a location to pick up their perscription becomes key.
Research
Looking at Existing Solutions
Electronic Medication Management Assistant (EMMA)
Vitality’s GlowCaps
HealthPrize & Other Mobile Applications
MedMinder
What is it? Web-enabled pharmacy that allows health care professionals to remotely deliver medications.
What is it? Pill bottle caps that provide light and sound reminders to take medications.
What is it? Mobile reminders and games that approach adherence through gameification.
What is it? Automatic pill despenser that uses remote monitoring with visual, audio, and digital reminders.
Key Factors Connects patients with health care providers outside of the doctor’s office, but still depends on altering their busy schedules.
Key Factors Deals with the issue of forgetfulness but does address other overlying causes of non-adherence.
Key Factors Helps instill habits of medication with reminders but does not address other overlying causes.
Key Factors Allows multiple caregivers to monitor care. Again, deals with the issue of forgetfulness but does other overlying causes of non-adherence.
Doctors are extremely busy and unreliable outside of the office. How can I create a system with minimal doctor involvement?
Successful way to keep patients motivated.
Most solutions exclusively address forgetfulness, what about other contributors to nonadherence?
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Research
Focusing on Patients with HIV In my research findings, I became particularly interested adherence issues outside of plain forgetfulness, as the existing solutions I looked at seemed to focus on that exclusively. I then found that that, unlike many of the other chronic diseases in which medication adherence is an issue, HIV effects a much younger demographic
and has many unique factors that contribute to a patient’s non-adherence, including social stigmas and depression. Furthermore, I found that non-adherence is one of the leading factors that contributes to HIV turning into full-blown AIDS, so I knew it was an extremely important issue. With this in mind, I began to focus my research specifically on HIV.
Demographic Factors Younger age
When I looked to existing systems pertaining to HIV, I found that 70% of HIV patients do not partake in any kind of support system, so I saw an opportunity to create something different than what is already out there.
Patient Factors Depression* Social Stigmas* Personal Stigmas* Substance/Alcohol abuse
Because there are so many different contributors to non-adherence in the disease, I wanted to create a holistic system that could be catered to the patients personal needs rather than a one-size-fits-all support group.
Strongest Barriers of Non-Adherence in Patients with HIV Medication Factors Pill burden Dose frequency Dietary restrictions Side effects Clinical Factors Comorbid diseases
Systems Factors Distance Long waiting times Co-pays Socioeconomic Factors Cost of transport Lower literacy
*Leading causes for non-adherence are all linked to a lack of support 10
Research
Crafting an Initial Research Question Once I gained an understanding of what contributes to non-adherence in patients with HIV, it became clear that some kind of social and supportive solution would be most effective, again, because depression and stigmas are the leading causes of non-adherence. I also found that reaching out, serving others, building relationships, recognizing healing as more than physical, and maintaining balance were all top factors in coping with chronic illness. All of these elements seemed to demand some kind of social support solution.
With this in mind, I developed my initial research question:
How can the implementation of a social service encourage and faciliate medication adherence in patients with HIV and how can physicians successfully introduce a social service to their patients?
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Strategy Methods of exploration and ideation 13
Strategy
Addressing the Research Question What would motivate patients to keep this up? What do and don’t they log?
I began my strategy for finding a solution by addressing the research question I developed from my initial findings, which was:
Initial Brainstorming A way to hold yourself accountable by logging behaviors
How can the implementation of a social service
Tracking progress so results can be seen
encourage and faciliate medication adherence in
Offering tips and success stories
patients with HIV and how can physicians successfully
Support of others– either online or in person
introduce a social service to their patients?
Connecting with doctors and experts
Can happen organically without being concretely incorporated into system.
Earning points– gameification or competitive elements My first strategy was just to come up with as many ideas for a potential solution as possible that could contribute to these factors based on my question.
Ability to use online or on a mobile device Support groups that can be both public and private
I then looked over my initial brainstorming of these ideas and determined where any holes may exist, developed further research questions, and identified any other important factors that I may not have initially considered. 14
With such busy schedules, will this be possible?
Discreteness is so important!!!
Maybe try something doctor-initated but
How can a digital solution combat this?
then transforms into social support.
Strategy
Question Refinement & Ideation The analysis of my initial ideas lead me to alter my research question. One of the large factors I ran into was that of motivation. I wanted to create something where patients would log their daily activities, but I struggled with finding a way that would keep patients motivated. I’d seen gameification successfully implemented as a strong motivator in other solutions and decided to add a gaming element to the social support idea. Thus, the system in mind changed from a social service to a social gaming system. Based on my research and analysis, I re-framed my project to encourage medication adherence with the idea:
To establish a network of continuous social game play where patients can track their medication adherence alongside other life events and occurences, earning points and qccolades from a network of peers and/or loved ones. 15
Strategy
Exploring Existing Systems Once I developed a direction for my project, I began looking at any existing systems that incorporated key elements of my idea. I looked to fitness and weight loss sites like WeightWatchers and Fitocracy, both of which incorporated the ideas of online social support and gameification of activity. I was able to pinpoint the successes and shortcomings of each system to keep in mind when developing my final project. I also looked to support-focused organizations like OneHealth and Alcoholics Anonymous. OneHealth was a great resource to see how an online support network and sense of community can help motivate patients toward better health. Alcoholics Anonymous achieves the same thing, but by establishing inperson relationships rather than online. Twelve-step programs like AA also have their system of earning chips, which provided inspiration for the nature of the gameification in my solution. I also found that basic social media, like Facebook groups and Twitter hashtags have prove to be effective and meaningful in motivating people in their health goals like weight loss or quitting smoking. Gaining inspiration from all of the successful and unsuccessful elements of these existing systems, I was able to begin to craft what my prototype was going to look like. 16
Strategy
Creating Personas
Borrowing from my research findings, I created four different personas of potential users to help determine what qualities the system would need for different kinds of patients.
JESSICA, AGE 29
THOMAS, AGE 32
ALLISON, AGE 18
MARTIN, AGE 40
Working single mother of two.
Married and working as an actor.
A senior in high school.
Single and working in finance.
BIGGEST OBSTACLE WITH DIAGNOSIS: Finding time to worry about her own health in balance with family and work life.
BIGGEST OBSTACLE WITH DIAGNOSIS: Thomas and his husband were both recently diagnosed and worry about their medical bills, especially on an actor’s pay.
BIGGEST OBSTACLE WITH DIAGNOSIS: Allison is struggling with telling her parents and schoolmates about her disease. She is feeling extremely alone and depressed.
BIGGEST OBSTACLE WITH DIAGNOSIS: He’s worried about the stigmas of living with HIV with his friends and co-workers. He wants to hide his disease and not have to take medication in front of anyone he knows.
HOW THIS CAN HELP: Thomas and his husband join a group together and find others with the same financial concerns. They set bugetary goals for themselves based on the suggestions of their group members and are able to afford the medication they need.
HOW THIS CAN HELP: Allison finds other teens going through the same thing in her network and an older mentor who was diagnosed around her age and has lived a full life with the disease for years. She is able to gain the confidence to be open with her family and is given hope about what’s ahead in her future.
HOW THIS CAN HELP: Jessica sets the goal to carve out more more time for herself in her schedule, including exercise, time for relaxation, and medication adherence. She reaches out to her sister and mother to be part of her network as well as finds another single mother living with HIV to be her mentor throughout the process.
HOW THIS CAN HELP: Martin decides to work on self-affirmation and becoming open with his friends, family, and co-workers. He finds a network of peers living with HIV dealing with similar issues. By allowing himself to be open with them, he eases into openness with others.
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Strategy
Establishing Design Criteria Through my research, exploration of existing systems, and personas, I established final design criteria for a system that would strive to achieve my goal.
FINAL DESIGN CRITERIA 1. Users create profiles and link themselves to others under the guidance of a physician or professional. 2. Holistic approach to medication adherence focused on lifestyle and wellness changes. 3. Allows user to determine their own goals and log in data for others to see. 4. Gives users one-on-one mentorships as well as group support. 5. Profiles can be as public or private as the user chooses. 6. Highly personal and customizable to the individual’s needs 7. Provides a continuous, lifelong journey through the system, allowing users to gain rewards and advance to new levels within the system. 8. Connects users to peers and/or loved ones.
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Strategy
Conceptualizing the System Great job! Keep up the good work!
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TOOK MEDICATION ON TIME
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The final concept for the system consists of an online social gaming network introduced at the doctor’s office at the time of diagnosis. Patients create online profiles and set wellness goals for themselves. They can choose to be connected to a group of unknown peers, work with an individual mentor, involve family members or loved ones, or any combination of those.
ONLINE
EXERCISED FOR 30 MINUTES
LEARNED TO COOK A NEW MEAL
Patients are then prompted to log their activity each day pertaining to their goals as well as their medication adherence. Their support group can see their activity on their feed and provide positive reinforcement. Once the patient has shown signs that their goal has been reached, they recieve a badge and move up a level, where they then set new goals for themselves. The system continues throughout the patient’s life and becomes an intergral part of their wellness routine.
GROUP HANGOUTS
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Iteration Sketching concepts, creating solutions 21
Iteration
Initial Sketches & Scenarios Early activity maps and scenarios for the website’s homepage and for setting a patient’s initial goals.
Early sketches of the website’s homepage and email prompt to log daily activity.
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Sketching out key qualities of the system and their connections to each other. This allowed me to find a hierarchy and establish an identity for the system based on its core elements.
Once I solidified my concept, I began sketching out scenarios for how the system would work in detail. I also gathered all the qualities of the system to determine what should be the greatest focus. I made a list of key adjectives that I then arranged hierarchically and used to develop the system’s identity. I then moved to a few initial digital sketches before focusing in on a detailed scenario.
Iteration Once I determined the qualities of the system, created rough scenarios, and sketched initial concepts, I then mapped out an in depth scenario of how the system would work.
DEVELOPED SCENARIO
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Iteration
Early Iterations Based on my hierarchy studies, I found that the system had many qualities of growth, development, strength, and togetherness. With this in mind, I named the system, “The Orchard,� as all members are individuals who are individually growing together and create on beautiful whole.
Sketch of daily activity log
Identity Studies
I wanted the daily questionnaire to be personal and open-ended in this particular scenario, so I designed it with open ended questions as well as color identification of how they are feeling. However, in the actual system, the questions and style would vary from person to person. 24
Iteration
Website Sketch
I initially designed the website taking cues from social media that users would already be familiar with, like Facebook and Twitter. Using elements like a news feed, live chat, and profile pages, my intentions were for the user to utilize The Orchard like any other social media site they frequented every day.
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Iteration
The Orchard
Refined Sketches
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Iteration
In this next round of sketches, I altered the identity to be more gender neutral and upbeat. I didn’t want the site to feel at all clinical, but rather have a positive tone, so I traded the cool blues and pinks for warm greens and orange. I also explored using a friendlier typeface. I moved the daily logs from an email forum to a strictly mobile activity, under the advising that many patients will want to log their medications and activities as they are to them, rather than having to go back at the end of the day. I also included a map where users can track their personal progress throughout their journey and see what they need to do to reach new levels. 27
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Prototype Final deliverables of “The Orchard” 29
Prototype
The Orchard After conducting many drafts and iterations as well as taking in feedback from both my project advisor and classmates, I developed a final prototype for “The Orchard.�
The Orchard is an online support system, designed with patients with HIV in mind but not exclusively limited to them. The Orchard builds a personalized system that allows users to find a support group that works best for them and set and track wellness goals in the most effective way. Users can then socialize, earn points advance levels based on their personal progress, and recieve encouragement from others through the website.
The Orchard is not just about medication adherence, but about promoting a positive, healthy lifestyle where patients feel safe, supported, and cared for. This would ideally help combat large barriers for non-adherence like depression and stigmas. 30
Prototype
The journey begins at the doctor’s office, where patients recieve an informational brochure about what The Orchard system can do for them. The brochure provides a sense of hope and understanding for a recently diagnosed patient that may be lost as to where to go next.
On the back there is a questionnaire, asking the patient questions about their coping styles, current plans for support after their diagnosis, personal preferences when it comes to reaching their goals, and their strengths and concerns when it comes to their condition. They are also given a unique PIN number that will be used to create their account. They are then prompted to log their answers into TheOrchard.com to begin their journey.
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Prototype
The patient then visits TheOrchard.com to set up their account. There, they enter their PIN and create a username and password. The PIN ensures that users on The Orchard’s information will remain completely confidential to anyone outside the system. Patients can be as private or public about their information as possible, having the option to give their name, sex, and location.
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Users then enter their answers from the questionnaire to determine the nature of their personal support system.
Prototype
Once their answers have been calculated, The Orchard provides them with a user profile and a support program for them. If these do not seem to fit the user’s needs, they have the option to alter them in any way. In this case, the user at hand was given access to a local support group of peers dealing with the same disease. They are also given a mentor who will be directly sent their daily activities to help hold them accountable and provide extra support.
Users then set up their profiles with as much or as little information as they choose. They also can select between recieving their daily notifications from The Orchard via email or via mobile device. Then, they set their first goal in the system and establish tasks they can perform each day to reach them. This would vary depending on the user’s answers in the questionnaire, as some may have more open-ended responses while others have a rigid list of things to do each day. 33
Prototype
Once their account is finished, patients can visit the homepage and see the other members of their support system. In this case, the user can see the most recent activities logged by their friends. They can then click on each of their friends to see an in-depth overview of their progress. They also have the ability to comment on or “like” any of their friends’ activities. The chat feature allows them to engage in oneon-one private conversation through the system as well. 34
Users can see their own progress mapped out once they have been integrated into the system. Their progress each week is determined by the amount of points they earn, which is calculated each day when they log their activites. The system dictates the amount of points they recieve based on their daily activities, progress, and mood. This would also be what a user’s friend’s profile would look like when they selected them.
Prototype
This support group specifically focuses on socialization, so the user is given a calendar where they can plan various activities. The group meets each week to partake in different kinds of fun activities. Users can also plan other social events and meetings with their mentor.
Because this user established themselves as someone who expresses themselves in a visual way, they are prompted to track their progress and mood using a color gradient. They also identified themselves as someone who can easily stick to their health care routine, so direct tracking of their medications is not included in their system. Instead, they log in daily activities that help them reach their current goal. Then, they send out a short summary of their day for their group members to see.
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Prototype
Here, we see a different user’s experience in the system. This user expressed that she prefers to only turn to a few close family members and friends for support. So, the system allows her to invite her father and sister to guide her through her journey. They are each notified whenever she tracks her progress and send her daily affirmations. She can also privately chat with them through the sit. 36
When the user clicks on her Dad’s photo, she is taken to a profile with a message from him that he sent in the beginning of her journey. She can also see a log of all the messages he sends her each day. This helps her stay motivated and supported throughout her personal journey.
Prototype
This user logs in the medications she takes each day and at which time through the system, as she identified that she may struggle with keeping up with her health care needs due to her busy schedule. She also established herself as someone who copes best went venting and expressing herself as much as possible. Thus, to track her progress, rather than simple selection, they are given the opportunity to write open-ended responses about her day. 37
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Reflection My take on the project. 39
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For me, The Orchard is one of the most important projects I’ve worked on. I really loved conducting research and creating a prototype that has the potential to impact a large audience so greatly. I’m very interested in how design can help improve care, so this project taught me a lot. Working on something individually and over such a long period was definitely a challenge and I hit some road blocks, especially toward the end of the project. However, I am proud of my idea and the system I designed. I would love to pursue it further and see where The Orchard can go! I think it has the potential to really be something great if it were able to reach a market.
Sarah Gorman Communication Design Carnegie Mellon University School of Design Class of 2013
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