Leading Practices in Innovative Healthcare Platforms

Leading Practices in Innovative Healthcare Platforms

Michelle Alleyne Blair Corcoran Paige Gildner Joanie Jochamowitz

Strategic Design and Management in New Economies September 29, 2013 Professor Joseph Press

The formulation of a wicked problem is the problem!

Horst W. J. Rittel Melvin M. Webber

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Problems in healthcare tend to be related to a whole host of issues from privacy and security, to cost, insurance coverage, pandemics, incomplete contradictory requirements, lack of infrastructure, complex interdependencies that are often unique to both local, national and global settings and the list goes on (Kolko, Wicked Problems, 2012). But as Gawande said in The New Yorker: “trying to solve a wicked problem presents risks and uncertainties. Yet so does inaction. All that leaders can do is weigh the possibilities as best they can and find a way forward.” The actual problem will not be understood until the solution is developed according to Jeffrey Conklin, thus making the problem a wicked one. So what exactly is the problem in healthcare that makes it a wicked one? Is it the cost of healthcare due to the lack of infrastructure? Is it the doctor - patient model being used both in first and third world countries that’s not the right one for the Post Digital Age we live in today? It is too much reliance on mobility and big data?

Todays health care industry screams for a disruption.

(Clayton M. Christensen, HBR, 2011)

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The Doctor-Patient Model of today & tomorrow

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If consumer empowerment in today’s health industry is compared to other cross-industry competitors like retail, and technology according to Dave Chase, in Forbes “Healthcare’s Trillion-Dollar Disruption” it is clear that almost every other consumer-facing industry has hopped onto the wagon, and healthcare seems the be the last one on the train. For far too long, health systems have been “billing centric versus patient and health outcomes focused” due to the flawed fee for service model so often employed (Chase, 2011). Healthcare systems’ belief that innovation only occurs from the top-down has left the industry unprepared to meet the disruption that is occurring from the bottom-up (Miller, 2012).

Main and Adrian Slywotzky, 2012) In the next 10 to 15 years, Millennials will begin assessing more intensely which healthcare organizations both private and public offer what and how, as well as looking closely at how they were treated. They will have every other industry giving them access to information, personalization and value through technology. The supply-driven healthcare market is already changing into a more dynamic model (Main, Slywotzky, 2012) and those conventional organizations offering a traditional patient-doctor model will find themselves fighting like Main and Slywotzky state a “rearguard battle, hampered by collapsing margins and eroding market/consumer shares”

Chase illustrates the changing model in healthcare by stating, “Consumers are already adapting a new role and the empowerment given when buying a car, planning a family vacation or going out for a run with a pair a sneakers and their cellphone is about arriving to healthcare, 15 years later than most industries.” Technology and access to information in the digital revolution happening today, is allowing customers to demand information, engagement and value. (The Volume-to-Value Revolution, Tom

The Doctor-Patient Model has been placed in a physical realm both in first world and third world countries, for those who can afford the services and cannot. Every interaction between both parties is within the same space as well as the pre and post states. A customer persee, will attend a doctors office based on friends’ and family referrals or from a consultation with their insurance provider for doctors within their network.

The first interaction being the appointment is done by phone (ie. physical), and the

last interaction being the payment for the service provided is done with both parties present in the same space. The Doctor Patient model follows the same pattern as the payment model, where both parties are present within the same space and an interaction of communication between the doctor and patient occurs. In the past eight years, humanity has adapted technology as part of their lives and so have doctors and patients.

Doctors are communicating in their lives with family and friends through email, text messages, Facebook, etc. So the question is: Why aren’t hospitals allowing doctors to communicate with their patients through tools that are as easy as email, text or Facebook? (Main, Slywotzky, 2012) Healthcare is currently undergoing an evolution which will involve the use of mobility, cloud services, big data and social connectivity. The digital revolution will be disrupting the doctor patient model as well as health care creating for engagement and value.

The following cases will dig deeper on how the digital revolution is reshaping the future of the doctor-patient model and healthcare industry in both physical non-profit and digital for-profit organizations.

CASE STUDIES Timmy Global Health Joanie Jochamowitz pgs. 8 - 15

Partners in Health Paige Gildner pgs. 16 - 23

HealthTap Blair Corcoran pgs. 28 - 36

Patients Like Me Michelle Alleyne pgs. 38 - 45

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Physical & Non-Profit Platforms Timmy Global Health & Partners in Health

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Will health care ever be affordable and conveniently accessible to every human being in the world? Almost every industry began with services and products that were so complicated and expensive to provide that only people with a lot of skill and a lot of money could participate, (Clayton M. Christensen , 2011) for some reason, the healthcare industry, which is “owned� by multiple stakeholders both in the public and private sector has not been able to achieve this, more so in third world countries. This is why most nonprofit healthcare organizations are formed with the intention of providing free healthcare to those who cannot afford it or do not have access to it based on their geographical locations. Each organization has it’s own methodology and strategy in order to raise money and distribute it equally to those in need. The following case studies for both Timmy Global Health and Partners in Health will showcase two non-profit organizations who are on the ground resolving the lack of healthcare for thousands of people in different countries, with different strategies and overlapping tactics that are allowing them to improve their local operations and could potentially influence the change the healthcare consumer is looking for.

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PHYSICAL PLATFORM | NON PROFIT

TIMMY GLOBAL HEALTH Timmy Global Health is a non-profit organization that believes all people–regardless of who they are, what resources they have, and where they live–should have access to quality healthcare. (Timmy Global Health, 2013) They provide primary health-care needs in third world countries like: Guatemala, Nigeria and Ecuador. Their operations vary depending on their country, Timmy can be found providing health-care within a capital or in a rural communities. Founded by Dr. Charles Dietzen in 1997, not only does Dr. Dietzen wanted to expand basic health care to those in need but also “inspire the next generation of healthcare professionals and leaders to do the same.” (Timmy Global Health, 2013)

Goals & Objectives Provide primary care services to low income communities through a continuity healthcare model.

Help and aid partner organizations operations. Timmy Global Health provides partner organizations in the different countries they operate: financial, medical, and human resources required to expand their outreach and impact.

Empower students with the challenge of improving and providing health care services firsthand to those in need.

Utilize data-driven evaluations to guide efforts and improve their operations.

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PART I: TIMMY GLOBAL Partnering Model

Timmy Global partners with colleges and universities throughout the United States.

According to Valerie Matron, Medical Programs Coordinator for Timmy Global Health Ecuador operations, Timmy currently has 35 college chapters. Each chapter is managed internally through their own structure, but typically they have a president, vice president, treasurer and secretary. Timmy empowers their chapters across the United States with the responsibility for: fund-

ing, student volunteer recruiting and medical recruiting (Primary Care MD’s, Physician providers, pharmacists and nurses). It wouldn’t work out if Timmy headquarters would have to drive all remote chapters internally, because it would call for more personnel and elevated management cost. The empowerment given to students until now has been impressive. According to Matron, most students join their chapters by word of mouth and by the club’s presence and advocacy on campus. There are some chapters that are very active, and have raised over 10,000 dollars a year, the average money a chapter raises is about 7,000 dollars. The money raised by the student chapters helps cover costs for all operations within their continuity health care model. This includes: travel expenses, primary care medicines and patient referrals.

Other Partners Young Presidents Organization (YPO) and Microsoft: Both companies have annual volunteer trips of their employees. Employee volunteers do the same work student volunteers do during their primary care medical trips.

Medwater: Timmy Global is just now starting to seek a partnership with Medwater in Quito, due to TimmyCare (more ahead).

International model: They work through all the countries with partners. These partners are either american ngo’s as well as local hospitals, community centers and government organizations that help Timmy Global reach commu-

nities in need, use their patient referrals, etc.

Continuity Model Timmy’s continuity model is based on continuous patient care. Every 2 - 2.5 months trips/ brigades are organized by the medical programs coordinator into the rural community chosen. The trips are compromised on Timmy Global Health staff, student volunteers and a group of medical staff. Communities are chosen based on: accessibility of healthcare services, overall poverty level, community leadership, and previous experience working with outside groups. The trips are primary care medical trips where they visit multiple neighboring communities with the help of their local partners. All community members who attend these clinics are given a routinary primary care checkup and depending on the doctors diagnosis the patient will receive their prescription, followed by their medicine.

Patients who are detected a more serious problem or are believed to need specialised treatment are given a patient referral. Timmy’s patient referral system allows patients to receive treatment at the closest local partner clinic or hospital, with all expenses paid. All patients that are referred are then monitored by the medical staff on every trip. Timmy also classifies certain patients as: “chronics” these are patients suffering from diabetes, hypertension - these patients are monitored as well and are given treatments that last from 2 - 3 months, which will last until the clinic returns.

Timmy’s primary care medical brigades are about one to two weeks long. (Matron, 2013)

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PART II: ECUADOR Partnering Model

Timmy Global Health operation in Ecuador is divided between Quito, the capital of Ecuador as well as Tena, which is located in the amazon basin. The Timmy Global Medical Service Trip Report for July, 2013 states that their main partners for their operation in Quito and in rural communities throughout the country is Tierra Nueva Hospital. The 138-bed hospital acts as Timmy’s main referral partner, receiving Timmy patients from rural areas and managing Timmy’s patient social work fund.

Timmy works in collaboration with the Tierra Nueva Foundation year-round to performing primary care clinic trips which allows patients to receive follow-up care as well as help those who need primary health services. (p. 2) Hospital Padre Carollo serves as Timmy’s largest referral center where patients from the coastal, amazonian and andean regions are referred, from July 1st, 2012 to June 30th, 2013 7,834 patients have been attended by Timmy Global Health Primary Care Clinics, of those 605 have been referred to the Tierra Nueva Hospital with all their expenses paid. Timmy has 2,210 chronic patients which they monitor every 2.5 months in their trips. For the 2012 - 2013 fiscal year 154 medical professionals have participated in the medical brigades with the help of 217 volunteers.

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Muz Ahmed

Volunteer Director Timmy Care

Valerie Matron Medical Programs Coordinator Timmy Global Health Ecuador Operations

PART III: Timmy care TimmyCare is an Electronic Medical Records platform created by a Timmy Global Health Volunteer from Microsoft named Muz and it is currently being deployed in Ecuador.

“Immediately as soon as I stepped on the ground, I was like wow: software could revolutionize their processes.”

Muz Ahmed, Volunteer Director of TimmyCare TimmyCare was developed based on the need to store patient data within their continuity model, in order to account for referred patients advancements, chronic patients developments, the need to identify trends in diagnosis in order to better solve health issues in Ecuador. The initial solution was the use of paper records, which medical coordinators and volunteers filled in with patient information from vitals, to prescriptions. They stored it into suitcases and travelled through the andes and amazon with their suitcase of records, at the beginning it was ok, but after the first year because of the humidity, the records began to disintegrate to the touch. TimmyCare allows “Timmy Global Health to properly keep track of data as well as have tangible evidence of the work they are doing and how they are improving lives” Tammy Truong, Ecuador Staff.

How Was TimmyCare Created?

Valerie explains that the task of creating an EMR has been a journey and a task on its own.

“The first year of TimmyCare no one wanted to use it, the medical team didn’t want to be in the jungle and having to deal with confusing technology, inputting information was confusing and even a couple of doctors asked us if they could just continue using paper after that first than grabbing a pen and writing on a notepad.”

Initially the platform was built from a software engineer’s perspective, which created a difficult user experience, after it’s first prototype; Ecuador’s Timmy Global Health Staff & full-time volunteers decided to implement a user-friendly front end that would make using TimmyCare easier than writing: stats, diagnosis and prescriptions on paper. Timmy care has been created using a human-centered approach, the project team has been able to first hand understand the needs of it’s users, volunteers and medical staff and test it on ground improving its usability after every brigade. (Ahmed, 2013) The platform has been created with flexibility and mobility in mind so that it was grow with Timmy Global Health and it’s needs.

How Does TimmyCare Work?

When a primary care clinic reaches a com-

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munity, each patient is greeted by a promoter and registered into TimmyCare. They are given a number, this number is used to quickly input their data into TimmyCare. The second station is the where student volunteers ask the patient what their ‘chief complaint’ is, from here they go to the vital station, where there temperature, pulse and blood pressure is measured. From here they can see the physician, the physician while on consultation with the patient can input their prescription and by the time they get to the pharmacy station, their prescription is ready for them to be picked up (TimmyCare, Vimeo, 2013). TimmyCare collects clinical data, and then runs analytics on top of that for trends trying to identify data on what is the highest percentage of diagnoses

“Being able to mine that data and know exactly what we need for each area it is going to make it invaluable for us to take the right medications to the right places at the right time.”

Sarah Griffin, Pediatrician based on demographics and geographics.

(Ahmed, 2013) Muz Ahmed, explained how TimmyCare is query driven, so users have to search for the data they are looking for through tags, similar to ICD-10, RxNorm and SnowMed. These three platforms are medical data platforms. ICD-10 classifies symptoms, diseases, etc; RxNorm catalogs prescription drugs and medicines and SNowMed is a multilingual platform that allows the retrieval of valuable clinical history. (2013)

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Key Elements of Timmy Care Freedom & Privacy: Data is shared throughout all Timmy Global Health, and everyone in the brigades have access to the data. However this may change in the near future, because Timmy Global Health is going to make the software legal, which will have to obey USA health privacy laws on digital data.

Mobility: Different components can be run not only in different hardware but the platform can be run simultaneously in multiple locations which can allow for this software to be used internationally by all of Timmy Global Health and all of their operations in Nigeria and Guatemala. Giving Timmy Global health access to trends and patterns in health care issues in globally or local. They have plans to give the software to other NGO’s in order to collaboratively aggregate data from multiple countries. (Matron, 2013) Flexibility: The data model supports different additions, for example it will soon be localized and configuration driven which will allow for flexible intelligence within the platform which in return will support customization. (Ahmed, 2013) Secure: All data is stored and encrypted in the cloud. Their ground servers are secured via encrypted disks and password protected.

Data mining: TimmyCare stores historical data that allows for data mining which can potentially influence next TimmyCare updates.

Impact of Data in Healthcare Services TimmyCare is helping Timmy Global operations in Ecuador change drastically. It is not only allowing them to be able to attend more patients in their trips because a more efficient process has been installed and there are now fewer lines which in return makes patients happy, as well as strategically deciding what type of medication they need to bring to their trips based on the percentage in diseases identified from past visits.

Another important impact of TimmyCare is the partnerships they are just now beginning

to form, especially with MedWater. Thanks to the surprising statistic diagnostics they have discovered that Ecuador’s main diagnostics is parasites due to the quality of water in Ecuador. At first they thought that it was only in communities in the amazon where the percentages are between 25 - 40 % of the diagnosis (Medical Service Trip Report for July, 2013), once they started implementing TimmyCare in Quito, the capital, they realized that parasites was the single most diagnoses condition in the capital. (Matron, 2013) Hopefully by partnering with MedWater they will be able to figure out: why are there so many water based diseases?

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Challenges The Need for Doctors Timmy Global Health has a hard time finding medical volunteers, surprisingly because of the type of health care Timmy Global offers in third-world country. Matron states:

“We help our chapters in finding doc-

tors, nurses and pharmacists that want to volunteer. Doctors are not going to be in extreme measures operating in the middle of the jungle, so they don’t find it that appealing, we aren’t a Doctors without Borders, it’s about providing primary care within a continuity model and helping people that have a chronic disease within their monthly check ups, so it’s hard sometimes to concrete a

good amount of medical volunteers.”

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The Fisherman’s Paradigm

How to they allow communities to outgrow the need for them? Is the continuity health-care model effective, or does it create dependency, and if it create dependency how can that be sustainable through time? Timmy Global Health still needs to find a way to allow communities to outgrow them and build their own health-care structures with the help of local government and other local organizations. Even though their efforts are helping people receive primary health care services every 2.5 months at no cost, how does Timmy Global not create dependency and allow growth. It’s the “f you give a man a fish, you feed him for a day. But if you give him a fishing rod, you feed him for a lifetime”. The questión is: Could TimmyCare potentially be the catapult for Timmy Global Health to give Ecuador, Nigeria and Guatemala a fishing pole?

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PHYSICAL PLATFORM | NON PROFIT

PARTNERS IN HEALTH Revolutionary in its quest and admirable in its cause, Partners in Health is a Harvard-affiliated, non-government healthcare organization dedicated to providing impoverished nations and developing countries with quality healthcare solutions. The brainchild of Massachusetts doctor Paul Farmer, Partners in Health was founded in 1987 with the help of Ophelia Dahl, Thomas J. White, Thomas McCormack and Dr. Jim Kim. The two goals of Partners in Help, according to its mission statement – “to bring the benefits of modern medical science to those most in need of them and to serve as an antidote to despair” – have taken Partners in Health from it’s flagship project in Cange, Haiti to encompass branches in 12 countries on four continents.

http://www.pih.org/pages/our-mission

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Why is Partners in Health Interesting?

Partners in Health is built primarily on a model of community-based partnerships and education techniques. By creating strong partnerships with “sister organizations”, Partners in Health works directly within communities to improve the quality of public health systems and deliver healthcare solutions in the form of hospitals, medicines, doctors and physicians, and new technology.

reforming global healthcare. In Mountains Beyond Mountains Kidder dives deeply into the Partners in Health founded sister organization Zanmi Lasante, founded in Haiti. At the center of Partner in Health’s focus, Zanmi Lasante has become the “heart and soul” of Partners in Health and is the organization most widely recognized by those with knowledge of global health systems.

Farmer and the other founders of Partners in Health have been strong advocates of spreading healthcare knowledge since the start of the organization, and have worked to provide members of the community with the tools they need to build and sustain networks of healthcare in their nations.

Partners in Health differs from other healthcare aid organizations because it is not fleeting. In the face of emergencies and trauma, devastation and deadly illnesses, Partners in Health does not simply offer a lump sum of financial assistance to aid recovery.

Instead, Partners in Health is working to create permanent healthcare solutions to the communities that need them most.

the faces of partners in health

In the autobiographical book Mountains Beyond Mountains: The Quest of Doctor Paul Farmer, a Man Who Could Change the World, author Tracy Kidder makes Paul Farmer a household name. The image he creates of Farmer is one of an intensely passionate man entirely committed to

Ophelia Dahl Co-Founder

Paul Farmer

Co-Founder, chief strategist

Dr. Jim Yong Kin PRofessor, doctor

Todd McCormack founding board member

Todd White

Early financer, supporter

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Zanmi Lasante A Platform for Innovation in Healthcare

ing Haitians to serve as critical elements of a successful infrastructure (Kidder, 2010) - in this case, in the healthcare sector. By adopting the accompaniment approach, Partners in Health and Zanmi Lasante have devoted themselves to attempting to correct the sad and disconnected approach taken by other NGOs in Haiti which, while inhabiting the country, have failed to remove it from poverty, to work with Haitian officials, and have essentially created a parallel government amongst inflation and poverty (Kidder 2010).

When Partners in Health began its quest in Haiti in 1987, it was met immediately with Haitians men, women and children who were plagued with tuberculosis, HIV and other chronic diseases and illnesses. Farmer’s focus in the early years in Haiti weighed heavily on these issues and he and his team worked ferociously to nurse the sick Haitians back to health. The Partners in Health staff devoted itself so wholeheartedly to the organization’s cause that some of them sold many of their possessions and relocated to January 2010 Earthquake Haiti to dedicate themselves more entirely On January 12, 2010 a 7.0 earthquake hit 16 miles west of Haiti’s capital, Port-au-Prince, to the cause. leveling parts of the country and causing an Haitians were elated with the presence of estimated 200,000 deaths. As the center the new clinic, even going so far as to travel for health care access, and not just disaster miles to meet Farmer whom many referred relief, in the impoverished nation and more to as “a god” (Kidder, 2003). But what Part- than 20 years established at the time, Partners in Health was providing for Haiti ex- ners in Health was the “go-to organization” tended beyond vaccinations and clinical after the disaster, though they were not necmedication. Farmer and Partners in Health essarily anticipating the status (Smith and were creating the framework for a sustain- Smith, 2010). able healthcare model that would one day go from one of aid by American doctors and Because of the accompaniment approach physicians, to one that would become the and the healthcare knowledge Partners property of the Haitian people themselves in Health has been able to instill in its inin working to repair the ill and rebuild the frastructure, the clinicians, physicians, and doctors were able to begin assisting with recountry’s crippled economy. covery without awaiting instruction from the In order to accomplish this huge task, Part- Partners in Health headquarters in Boston. ners in Health and Zanmi Lasante adopted Some doctors and physicians with houses the approach known as “accompaniment”, in Port-au-Prince established impromptu or the approach of including Haitian author- clinics at their homes to begin caring for the ities in all projects and employing and train- injured, and the emergency teams at the or-

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http://wgbhnews.org/post/paul-farmers-vision-health

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ganization’s trauma centers were tested in the aftermath (Kidder, 2010).

28,000 to 160,000 addresses following the quake. But the greatest shift in healthcare and innovative thinking did not come from As one of the pillars of response to the disas- the money or catapulted interest in the orter, Partners in Health experienced tremen- ganization - instead, it came from the staff at Partners in Health practicing the accompaniment approach to coordinate assistance “[The Haitians] need someone to be from the numerous other NGOs present in with them and to do simple careHaiti at the time.

giving, whether that’s changing their dressing, changing their bedpan, holding their hand, walking to get the food they can’t get because they don’t have a leg. That system of community care is what Partners in Health can contribute.’’

Dr. Evan Lyon played a crucial role as he took orders from Farmer to ensure that all the NGOs assisting in the recovery process didn’t make their own decisions, but instead were led by the Haitians and what they felt they needed to recover. By stifling any “turf wars” that could have happened, any by encouraging connectivity between the NGOs, Dr. Evan Lyon Lyon was able to continue to foster the powerful and critical relationships with Haitians dous growth in numbers. It raised $25 million needed to allow Partners and Health to grow in just the first week and its e-mail list leaped and survive in the nation.

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partners in health and hifa 2015 While making great strides in creating a sustainable and unparalleled physical healthcare platform in Haiti, Partners in Health has also put itself in the position to be the official supporting organization of Healthcare Information For All (HIFA) 2015. This amazing initiative aims to provide basic healthcare knowledge to everyone in the world by 2015. Their motto, “People are dying for lack of knowledge”, embodies a sad and wicked truth. Without appropriate healthcare providers, antiobiotic intervention, or access to a free hospital or clinic, people will continue to die at a rapid rate, especially in developing countries (HIFA.org).

Under their continuity model, HIFA 2015 allows doctors, policy makers, researchers, professors, and journalists to collaborate and organize healthcare information into an effective healthcare knowledge system. This same system has opened the doors to think of innovative approaches and solutions to reach the ultimate goal of providing healthcare knowledge to all by 2015.

In April 2013, the 1st HIFA “smart goal” was collaboratively developed - a goal that says, “By 2015, at least one telecoms provider, in at least one country, will endorse the vision of Healthcare Information For All, and will provide free access to essential healthcare knowledge in the local language, preloaded on all new mobile phones they may sell and freely downloadable to all those who already have a mobile phone.”

While the involvement of Partners in Health in HIFA 2015 is currently still from more of a collaboration standpoint, the potential achievements of HIFA 2015 would tremendously alter healthcare in developing nations, Haiti included. With widespread access to healthcare knowledge, developing nations will have the opportunity to see their healthcare fields advance in a more digital way, an experience which could fundamentally alter how countries understand a wicked problem (healthcare) Partners in Health has been working for years to answer.

http://www.hifa2015.org/about/the-strategy-for-achieving-our-goal/

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Hôpital Universitaire de Mirebalais Stephanie Garry, a writer for the Tampa Bay Times, who also works for Partners in Health out of Boston recently wrote a article about a new Partners in Health facility in Haiti which opened this spring. An absolutely incredibly facility, Hôpital Universitaire de Mirebalais, or HUM for short is, as Garry writes, “one of the few visible signs of progress” since the 2010 earthquake (Garry, 2013).

government and Partners In Health/Zamni Lasante will contribute to operating costs, and management of the hospital will gradually transition to the government over the next 10 years.”

HUM, Garry explains, is a long-term solution to a healthcare challenge in Haiti. It promises opportunities for development and growth among the Haitian community PartA 205,000 square foot facility, HUM was built ners in Health and Zanmi Lasante wish to after the Haitian government worked with serve, and “offers a greater chance at slow, Partners in Health and Zanmi Lasante to lasting progress on entrenched problems of identify the need for a teaching hospital fol- poverty and inequality.” If Paul Farmer and lowing the 2010 earthquake. Partnered with the accompaniment approach, Partners in “Hôpital Universitaire de Mirebalais Health uses the work of accompagnateurs offers a greater chance at slow, or community health workers to assist in lasting progress on entrenched delivering healthcare, and these individuals, along with the doctors, physicians, nurses problems of poverty and and aids who also staff Partners in Health inequality.’’ desired a more advanced facility to learn Stephanie Garry, Journalist & staff at PIH and work in. his team’s 20+ years of dedication to HaiWith the help of the Haitian Ministry of Health ti are not proof enough of their overarching in the design and construction of the hos- goals to create a better nation for the Haipital, Partners in Health and Zanmi Lasante tian people, than the spectacular HUM facilraised the $17 million through in-kind dona- ity will stand as one more lasting example of tions to build the facility. Garry further ex- the immense good which comes out of huplains the goal of the clinic when she writes, man rights approach to truly aiding poverty “Through a public-private partnership, the stricken and developing countries.

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Challenges As is obvious by the way in which Garry and Kidder speak of Haiti, there is great need in the country for a sustainable healthcare platform which will transcend changes to the nation’s infrastructure and persist in the face of disaster, trauma, poor health, and poverty. Partners in Health is on the right path, but the unstable state of the nation’s government and disorganization of other NGOs in the country are putting Partners in Health in an awkward position. Partners in Health and Zanmi Lasante do a fine job of establishing their own healthcare platform which the Haitians can rely on and trust, however the biggest challenge they face is not being alone in their quest.

community. The challenges to this healthcare platform do not lie in the lack of innovation or insight - instead it lies in the external factors which the staff and members of Partners in Health have little control over.

In this situation, it will be up to the leaders of Partners in Health and Zanmi Lasante to continue to lead by example, and keep their focus solely on the people of Haiti.

opportunities

The opportunities which will come for Partners in Health in Haiti will depend heavily on what happens in the next couple of years.

As Hôpital Universitaire de Mirebalais gets more established, and HIFA 2015 continues On an Innovation Hub radio show, Paul to make progress, new opportunities will Farmer says health care equity may be “the arise for Partners in Health to take advanranking human rights problem of our time,” tage of. and addresses how the accompaniment approach is working to create that equity Ideally, Partners in Health will make strides by attempting to establish jobs and a mid- in innovative methods for healthcare eddle class with the Haitians, for the Haitians ucation and digital platforms to extend (Miller 2013). Disparities in funding, discon- their services and broaden their reach. The nect throughout the government and a lack greatest potential will come from Partners of understanding of what it takes to take a in Health combining their education of their nation out of poverty in the long term on the Haitian staff on healthcare issues with techparts of the numerous other NGOs in Hai- nology issues. If the HIFA Smart Goal is ti, are keeping the attempts of Partners in completed in a timely manner, the potenHealth from making as big of an impact as tial of Partners in Health to deliver that to possible. their patients could completely shift the understanding of healthcare in Haiti, putting Partners in Health has the money it needs Partners in Health at an even higher level of to be successful. It has the donors, the in- service to the nation. telligence, and the support of the medical

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Physical & non Profit Platforms conclusion Non-profit, physical platforms are fulfilling crucial roles in developing countries to provide effective healthcare to those who need it most. By utilizing partnerships and communities, leveraging new technologies and embracing the capabilities of digital platforms, physical non-profit healthcare platforms are revolutionizing the way healthcare is delivered to impoverished nations. Timmy Care Global and Partners in Health both work towards a very similar goal - to deliver healthcare where it will make a difference. Both platforms are also plagued by the troubles of the countries in which they operate, and are sometime required to deal in the face of trauma and stress. Empowered leaders and strong methodologies keep these two physical non-profit healthcare platforms driving, and the desire on behalf of those involved in the organizations to effectively deliver healthcare forces the organizations to utilize innovation and new processes to provide healthcare.

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Digital & For-Profit Platforms HealthTap & Patients Like Me

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Providing differentiated health care has forever been associated with having increased physical and medical assets, like the best doctors, equipment and facilities. While an abundance of assets can have a positive effect on the delivery of patient care, it does not guarantee it. Similarly, innovation in healthcare has traditionally occurred from the top-down. Unfortunately, due to the increasing costs of healthcare, the target of much of this innovation has been heavily related to improving efficiencies in billing and not on patient care (Chase, 2011). Since patient needs have not been fully met by the industry, the DIY mindset that exists in so many other sectors has been quickly seeping into the health industry, with patients seeking out information on health and medical issues on their own (Chase, 2011). At the same time, technology companies and start-ups have entered the market, providing solutions to many common patient needs. The following section will review HealthTap and Patients Like Me, two online, for-profit platforms that are seeking to meet some of the needs of patients that the healthcare industry has overlooked.

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DIGITAL PLATFORM | FOR PROFIT

HEALTHTAP With wait times to get an appointment with a doctor averaging around 20 days in the

United States, many people are looking for other ways to get quick answers to their health-related questions. Statistics show that as many as 80% of people are turning to the internet to find answers to their questions (O’Hear and Emerson, 2013). Unfortunately, the quality of answers that users receive varies. Relying on information provided by unreliable sources can be risky, especially if individuals self-diagnose based on the information received.

Ron Gutman, a graduate of Stanford, sought to create an online platform that provides trustworthy answers to health-related questions by connecting users with licensed doctors (Roush, 2013). His first iteration of the site came in the form of a social networking platform for pregnant women in Palo Alto. After hosting the site for some time, he invited doctors to answer questions from users on particular days. On those days, user engagement increased. He noticed that “the user engagement propagated doctor engagement,” and “both got excited about the interaction” (Olsen, 2013). Based on this realization, Gutman expanded HealthTap into the site it is today: An online platform and mobile app that “connect doctors with patients in smarter ways, provide education to those who seek it and disseminate trusted, vetted, peer-reviewed health information far and wide!” (HealthTap).

HealthTap brings back the proverbial “house call” virtually by providing personalized healthcare to users through free questions to licensed doctors. Registered users can post questions anonymously that are 150 characters or less. Doctors can then answer the questions in 400 characters or less (Stross, 2012). While HealthTap is not the first online platform to provide this service, it is one of the most successful with over 1 million users and 37,000 licensed doctors registered (Olsen, 2013). An average of 10 million questions are asked per month with over 581 million questions posted since its launch (HealthTap’s Q&A Service Sees 7.5M Uniques Per Month). Its users are normally those with chronic conditions or young and healthy individuals who need a quick question to be answered. No matter the user, engagement on the sites averages 21 minutes per session. (Olsen, 2013). Interestingly, doctor engagement is higher than user engagement, with doctors averaging one hour per visit and answering around 581 questions (HealthTap’s Q&A Service Sees 7.5M Uniques Per Month).

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Key Elements of the User’s Experience Registration HealthTap is accessible to users through its website or through downloading the app, making the platform accessible whenever is convenient for the user. Registration is simple as well, with HealthTap requiring an email address, a password and the completion of four questions. The first step of registration requests demographic information and encourages users to provide it by claiming registrants will “get the best care by telling doctors about your background” (HealthTap).

The second asks for users to provide three or more topics that will help to “personalize your answers,” citing items like health-related topics of interest, medications taken, conditions faced or symptoms experienced (HealthTap). The next step uses the information collected in the previous two steps to suggest doctors to follow in order to receive updates on topics of interest. The fourth and final step encourages registrants to add their personal doctor. Once these four steps have been completed, the user is taken to the main site which contains a newsfeed that has been pre-populated based on the answers provided in the four-step registration. The registration process is relatively simple and provides the background information necessary to make the experience personalized.

Notable Features

Aside from the newsfeed, the site contains 11 features: Ask Doctors Your Doctors/Find Doctors Your Activity AppRx Conditions Symptoms Medications Procedures Tips and Wellness These features collectively provide a personalized experience for the user and help to keep users proactively engaged in the promotion of their health and well being.

Ask Doctors This is the question and answer forum for which the platform is known. Users are able to ask questions up to 150 characters, indicating whether the question is for themselves or written on behalf of someone else. Users can also choose to send the question for free or “send it faster for a charitable donation of $.99” (Healthtap. com). The site promises that these questions are anonymous. Once a question is submitted, the platform scans the question and routes it to a doctor within whose specialty the answer likely lies, increasing the odds of getting a credible response.

In the future, HealthTap will be releasing a mapping database that will match words in a question to medical code, further helping to connect patients to the correct treatment and doctors (Ferenstein, 2013).

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Since launching its mobile app, users also have the opportunity to contact a doctor directly via text message. Users can text a doctors who is available, signified by the existence of a green dot next to their picture, for $10; subsequent texts cost $5. Even though the texts are not free, they are still much cheaper than a doctor’s visit (With New Mobile Apps, Eric Schmidt-Backed HealthTap Brings The House Call Back To Healthcare).

on doctors that is publicly available, peer reviews and rankings by other doctors within the same field. Part of the score also comes from an algorithm that takes into account the number of questions, “agrees,” and “thanks” a doctor gets (With New Mobile Apps, Eric SchmidtBacked HealthTap Brings The House Call Back To Healthcare). The DocScore helps users make informed decisions about their choice of doctors.

The value in this feature is both the speed with which a response is received and the way in which the answers are presented to the user.

Answers are normally provided within 24 hours (O’Hear and Emerson, 2013). This is much faster than the time it takes to make an appointment and get in to see a doctor. Often one doctor will answer a question and other doctors will indicate that the response is appropriate by clicking on “agree.” This helps to show the credibility of a response. Other times, multiple doctors may respond to the question with different responses.

Both are replicas of what happens to users when they are patients: “HealthTap simply mimics the process of getting a recommended solution in person, exposes it to a broader network, and lets the patient decide from (ideally) a wider buffet of possible choices” (Ferenstein, 2013). Plus, the cost to the user is negligible if there is one at all.

AppRx

Your Doctors/ Find Doctors Your Doctor maintains a record of each of your doctors. Find Doctors helps users to find the best physicians in their area. To be able to register with the platform, doctors must be licensed physicians within the United States (Dolan, 2011).

This provides confidence that the individuals answering a user’s question have specialized knowledge and are qualified to speak to that knowledge. When looking for doctors, users are able to compare DocScores which the site defines as “a measure of [a physician’s] knowledge, trust, compassion and engagement” (HealthTap).

These scores are created through information

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Doctors review health-related apps, so as to better inform users about the best health or medical apps available. With so many health and medical apps out in the world today, it is difficult to know which are actually beneficial; this will help users to make better decisions about which apps they download and in which they invest. In order to maintain quality, “a medical review board evaluates a doctor’s first 30 app reviews before they are posted. Afterward, doctors are free to post reviews on their own” (HealthTap Expands Into Mobile Health App Reviews). Not only is HealthTap concerned with making sure that users receive reliable information from its website and mobile app, but the company wants to create awareness among the general public about those apps which provide trustworthy information and those that do not, further empowering the patient to make informed health-related decisions.

Your Activity This is where users can review their medical history and the questions asked on the site. They are also able to share this history with their doctors, ask a question, and update their medical health information. This is also the way in which a user could have a one-on-one consultation with a doctor. It is likely that in the future this feature will become more important due to the emphasis on electronic health records and the increased demand that doctors will be managing after the Affordable Care Act becomes a reality.

The remaining six features focus on offering users further knowledge on health-related topics of their interest. For example, the Medication, Procedures, Conditions and Symptoms features enable users to look at questions and answers submitted by others on sub-topics related to those subjects. The Tips and Wellness features involve subscribing to receive more information on matters of importance or concern by doctors who specialize in those areas.

Value to users As evidenced through the descriptions of each of the site’s and app’s features, HealthTap provides timely answers to users’ health questions and collects information of interest for the user. Collectively, these efforts “focus on educating the average user through informational Q&As” (With New Mobile Apps, Eric SchmidtBacked HealthTap Brings The House Call Back To Healthcare). As such, it is quickly becoming the “go-to source for reliable health information” online (HealthTap Buys Avvo’s Health Business). The Google Play Store’s reviews of the app demonstrate this: 10, 473 Google Play Store users have given the app a cumulative score of 4.5 out of 5. The majority of reviews spoke to the value of the question and answer aspect of the platform and the important information that they received from it. One user, named Jacqueline Hills, wrote the following on August 30, 2013: “One of a kind…Love this app. It is very informative. I’ve learned a lot in just this one night and ready to learn more” (Android Apps on Google Play). Another, named Lee Morgan, said “Accurate, up-to-date medical advice. I’ve approached the MDs on your app many times for numerous reasons and each time, bar none, I’ve received a carefully worded response by a qualified doctor. Absolutely wonderful…”

Real Time Reviews “One of a kind...Love this app. It is very informative.

I’ve learned a lot in just one night and ready to learn more.

“Superb. This has got to be the best medical app out there. You just message the doctors with your questions and you get answers for ree within minutes.

“Awesome app. I always have medical questions being a mom and this app is perfect. You’re not just asking anyone...you get free answers from doctors fast.”

(Android Apps on Google Play). Aside from just the health information that users receive, HealthTap enables individuals to make more informed decisions about doctors by interacting with them online and by reviewing their DocScores. These experiences can empower users to make knowledgeable decisions about the type of health care provider they want based on those that exist in their region.

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UNIQUE USERS PER MONTH

QUESTIONS ASKED PER MONTH

Private Consultations

Ask Questions

Consult with other doctors

Asks Public Questións

Doctor

Builds Reputation

Answers Questións

Users Satisfied

Key Elements of the Doctor’s Experience Reputation With the healthcare landscape changing at a rapid pace, doctors have to find ways to increase their patient base to meet increasing costs while managing already busy practices. HealthTap meets these needs by providing doctors an online reputation and presence through a convenient platform.

Doctors can use the website or download a customized HealthTap app. The doctors’ interface is different from the users in that it primarily features awards and referral buttons.

The interface and profile for physicians also include their full name, DocScore, number of “agrees” from other doctors, number of patients reached and the number of “thanks” received from patients (Ferenstein, 2013).

Awards are attained through gamification elements central to the platform to encourage doctor engagement and some fun. For example, doctors can receive awards, medals and trophies based on the number of answers they have provided, the number of “agrees” they have received from other doctors, and the number of “thank you’s” received from users. The platform is designed in such a way that only positive feedback can be doled out; this helps to cut through the “public naysaying taboo” that many thought would be difficult to overcome with doctors (Ferenstein, 2013). While some of the awards are purely fun, like the “Healthcliff Huxtable award,” they also create positive awareness about doctors to users who are potential patients (Ferenstein, 2013). These gamification elements are also part of a doc-

tor’s DocScore, which is made more credible by physicians ranking other physicians, creating an online reputation (Dolan, 2011).

The more accessible and credible a doctor appears, the better their reputation and the more likely users are to become patients.

Online Presence

The answers and “agrees” do more than provide credibility and a positive reputation, they also create an online presence for doctors and their practices. Part of this presence comes from the doctor’s profile page on HealthTap, commonly called the virtual practice. A doctor’s participation on HealthTap can have positive ramifications for current patients, providing a continuous presence in their lives. They can answer questions or receive updated information from their existing patients on the site. They can also utilize the database of questions and answers that HealthTap has accumulated to share with patients, helping to save precious time during visits to the doctor. Since appointments range between 8 and 11 minutes on average, providing links and references to existing frequently asked questions through HealthTap could allow doctors to have more appointments in a day and focus on the more serious reasons for visits (Dolan, 2011).

A doctors’ presence does not just live within HealthTap; it can be found through a general searches on the web as well. This is because the“same tips and questions are also visible by search engines and shareable through social media so all of a sudden patients especially local patients can find answers from

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these physicians rather than go to a website and find information from who knows who” (Dolan, 2011). The extended presence of the doctor through HealthTap encourages new patients. This is coupled with the fact that the platform also allows doctors to transparently describe their referral network, providing a further link to potential patients through a referral connection (Dolan, 2011).

venience; doctors are busy, and they are able to answer questions whenever they want.

Further, it makes physicians feel good to be able to help people quickly and conveniently.

Finally, some doctors use the platform because recommendations that have been requested by doctors have been incorporated (Liu, 2013). One item that was requested by doctors was the “curbside consultation” which privately connects two doctors. WorkOther Value to Doctors ing with a site that listens to ideas and needs is One of the other reasons that doctors find another incentives for doctors to participate. it valuable to register and participate is con-

“HealthTap is the best and fastest way to quickly get great answers and very useful tips from reputable doctor anytime, anywhere.

And astonishingly it’s all free!”

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CHALLENGES Even though HealthTap has been met with early success, there are still a variety of challenges that may hamper continued success. These include the following:

the doctors participating in HealthTap the new artists? After all, doctors are providing this content, much the same way musicians create music. For free” (Liu, 2013).

Limit to Personalization of Care: Answers made by physicians are restricted to 400 words or less. This means that answers can be vague when specificity is needed (Stross, 2012). In addition, the site contains a long disclaimer that basically says that answers do not constitute official medical advice, and the platform “is in no way intended to create a physician-patient relationship as defined by state and federal law” (Liu, 2013). If HealthTap wants to be known as the go-to source for reliable health information, the disclaimers really reduces the credibility of the answers found on the platform that its physicians provide.

Credibility of Physicians: In order to participate in HealthTap, physicians need only prove that they are licensed doctors within the United States; they are not required to be board-certified. Board certification has been considered the standard in the field because it means that physicians are receiving continuing education.

The fact that that HealthTap is not making this a requirement of registration concerns the medical community (Stross, 2012). Another concern about the credibility of the doctors and the answers provided comes from the American Medical Association’s president, who said that health information sites like HealthTap are skipping steps in providing proper patient care: “...a medical history is not taken, a physical exam does not occur and any suggested treatment is not monitored or assessed. Using this information in isolation could pose a threat to patients” (Stross, 2012). Finally, concerns about the validity of the DocScores in determining physician quality and credibility continue to arise. Many feel that the number of questions answered, “agrees” and “thanks” received, and awards attained are really not enough to paint a true picture of a physician’s quality (Ferenstein, 2013).

Free Knowledge: At present, HealthTap’s model works in large part because the knowledge provided by physicians is free. Some believe that this is an exploitation of good willed doctors.

In fact, Davis Liu, M.D., compared HealthTap’s treatment of physicians to Spotify’s treatment of new artists, quoting a tweet from Radiohead’s Thom Yorke: “Make no mistake new artists you discover on #Spotify will [not] get paid. Meanwhile, shareholders will shortly [be] rolling in it.

Simples” (Liu, 2013). Liu then pondered, “Are

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The Future for HealthTap Stan Gutman looks to align the future of HealthTap with the implementation of the Affordable Care Act (ACA) and the 30 million individuals who will soon have insurance coverage as a result (Roush, 2013). Gutman expects that the increase in insured individuals will increase the demand on doctors, further lengthening wait times to get an appointment with a doctor.

This will necessitate a change in the way in which doctors will interact with patients, coupled with health care providers and practices trying to find ways to cut costs. Gutman recently provided some startling commentary on the cost of doctor’s visits which make a strong case for the future of his company: “If you look at the nation’s total medical bills, office visits represent one of the biggest line items—some $487 billion a year. But at least 25 percent of the patients who show up to doctor’s offices could have gotten their questions answered without actually seeing a physician” (Roush, 2013).

The future might mean a business model which requires health systems, insurance companies and patients to pay for the service, but whoever will be paying, the cost will be much less than it currently is (Roush,

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2013). Still, Gutman is preparing his company to be the best positioned health information platform out there, so that they can be ready to meet the needs of healthcare providers and recipients as soon as the ACA begins.

“Aside from wanting to be the number one connector of patients and doctors, HealthTap has plans for using the data collected through its platform for the greater good.”

Aside from wanting to be the number one connector of patients and doctors, HealthTap has plans for using the data collected through its platform for the greater good. Since launching Hacking4Health in 2010, HealthTap has encourage partnerships with developers who can use HealthTap’s API to improve HealthTap’s current platform or to help create new meaningful platforms for both the United States and developing countries (HealthTap).

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DIGITAL PLATFORM | FOR PROFIT

PATIENTS LIKE ME PatientsLikeMe is an interesting case because it provides a new utility lever in a new stage.

It’s a new business model, a health data-sharing social platform that has transformed the way patients manage their own health conditions, and is changing the way the medical industry conducts research which in the end improves patient care. It was co-founded in 2004 by three MIT engineers: brothers Benjamin and James Heywood, and longtime friend Jeff Cole.

They were inspired to conceive this new business model because brother and friend Stephen Heywood, at 29 was diagnosed with ALS (Lou Gehrig’s disease - amyotrophic lateral sclerosis). It’s a fatal illness, where eventually the respiratory function is paralyzed. After Stephen’s diagnosis in 1999 his family scoured the globe for ideas that would extend and improve his life. They realized that Stephen’s experience was similar to millions of other patients around the world who live with life-altering and chronic diseases. Hence PatientsLikeMe was born.

Facing Wicked Problems PLM deals with the wicked problems of privacy & security by sharing patients’ comments on their medical conditions and treatment with each other and industry; what works and what doesn’t, while keeping specific personal patient information confidential. Other wicked problems in health care such as cost and insurance coverage don’t really come into play for them because the point is sharing information and finding others in similar situations to compare notes, and there is no cost to join.

PatientsLikeMe may be turning the wicked problems of chronic illness into tame problems as they are providing the medical industry with big data that helps find commonalities which could lead to improved treatments, “compassionate” drug use acceptance (where investigational drugs not yet FDA approved can be used for short-term terminal illnesses), and cures, since their big data accelerates

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“real-world” medical research shedding much needed light on over 1200 conditions/illnesses from a global group of 220,000 patients.

An Interesting Industry In the case of PatientsLikeMe, it’s disruptive platform puts power into the hands of the patient, no more being dictated to by doctors just trying to sell drugs or just prescribing ineffective ones. PLM alleviates red tape research that can take numerous years to gather. Now hundreds of thousand of voices can be heard at once regarding treatments and whether they are working, and medical research can be aimed in the precise direction to develop even better treatments and hopefully cures.

PLM allows for targeted studies of what does work in a manner not available before, providing strength in numbers and more clarity than the norm of singular patient voice to doctor, making case studies readily available to the

medical field that then buys their big data to further research. PatientsLikeMe is changing the rules in medical care by giving patients in depth information on outcomes, treatments, and symptoms that they can use to make more effective decisions to manage their illnesses.

Creation of Apps/Open APIs In the case of PatientsLikeMe, it’s disruptive platform puts power into the hands of the patient, no more being dictated to by doctors just trying to sell drugs or just prescribing ineffective ones. PLM alleviates red tape research that can take numerous years to gather. Now hundreds of thousand of voices can be heard at once regarding treatments and whether they are working, and medical research can be aimed in the precise direction to develop even better treatments and hopefully cures. PLM allows for targeted studies of what does work in a manner not available before, providing strength in numbers and more clarity than the norm of singular patient voice to doctor, making case studies readily available to the medical field that then buys their big data to further research. PatientsLikeMe is changing the rules in medical care by giving patients in depth information on outcomes, treatments, and symptoms that they can use to make more effective decisions to manage their illnesses.

Use of Basic Social Media Platforms PLM definitely incorporates basic social media platforms into their mix of site based forums, their blog, and the Facebook like patient socializing platform contained by their website; to allow for further outreach and sharing.

Friends, followers, and subscribers share similarly to how they share directly on the site, and PLM adds posts about surveys or studies they are currently conducting, sharing results and current trends. Here’s how they stack up: 14,539 likes

18,658 followers

255 subscribers

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the faces of Patients Like Me

Ben Heywood Co-Founder, President

Co-Founder, Software Developoer

James Heywood

Stephen Heywood

Co-Founder, Chairman

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Jeff Cole

Inspiration

trends in healthcare platforms Privacy Policies for Digital Healthcare and it’s Potential Effect on Emerging Healthcare Platforms

Currently, most health care data is inaccessible due to privacy regulations or proprietary mandates. PatientsLikeMe employs what they call an “Openness Philosophy” not to slow down progress and research; they democratize patient data and accelerate research like never before. There is privacy with specific personal data as mentioned previously, but this is a definite disruption in usual health care models. And has created a new way of thinking. PLM is “passionate about bringing people together for a greater purpose: speeding up the pace of research and fixing a broken healthcare system” (PatientsLikeMe).

It states on the PLM website that they “cannot guarantee the identity of any other Members with whom a Member may interact in the course of using the Site or who may have access to a Member’s Shared Data. Additionally, we cannot guarantee the authenticity of any data that Members may provide about themselves” (PatientsLikeMe). How is this figured into the equation of their findings? – This is a question I have posed and am awaiting a reply from their office.

Effects of the Affordable Care Act

The Affordable Care Act will most likely increase the membership of PatientsLikeMe. It will widen their target audience to include those who didn’t have health care previously, hence had no treatment information to report because they couldn’t afford a doctor’s visit. These new patients can now be a part of this groundbreaking platform to aid in the acceleration of research that hopefully leads to cure. I see the need for a targeted marketing campaign in order for PLM to reach these new clients, and the new audience possibly facilitating the creation of a new facet with different criteria within the platform. The Affordable Healthcare Act may turn the wicked problem of healthcare cost into a tame problem by bringing down cost and changing the care delivery model, since virtually everyone will be insured. Sign-up begins in a few days on October 1st.

Healthcare in the Digital Economy and Telemedicine

For PatientsLikeMe digital enhances the physical. They don’t provide any diagnosis or treatment just sharing and comparison of patient data like treatments that work, specific treatments, various conditions in order to generate quantitative consumer research that assist doctors in focusing in on what is

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said to work direct from multitudes of patients’ own mouths.

Patients Like Me is a health data-sharing social platform that the founders believe can transform the way patients manage their own conditions, change the way industry conducts research, and improve patient care. They post a very clear disclaimer stating, “This Site Does Not Provide Medical Advice - All of the material provided on the Site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health. Never disregard professional medical advice or delay in seeking it because of something you have read on this Site” (PatientsLikeMe).

Research Professional collaborations with medical education, healthcare administration, pharmaceutical companies, device manufacturers, R&D and training for new devices and procedures, national health agencies and local responders.

Changing Healthcare Landscape - Patient Centric Care

PLM is all about patient centric care. That’s how and why they were inspired to create the business in the first place, to help a family member with their treatment and improve his quality of life. The platform by design supports active involvement of patients and their families in this new healthcare model, and in decision-making about individual options for treatment. I signed up as a family member of someone with a life changing Embedding the Technology illness and was welcomed with open arms. within an Ecosystem and Immediately after signing up I received a welcome message in my inbox from a speCommunity cialist who seems to be assigned to me to PLM’s partners are committed to improv- ensure I’m accommodated and understand ing the lives of patients through research how to maneuver through the site. She even and certainly add to the unique “openness” checked up a few days later to question an ecosystem. The ecosystem is comprised of: entry I made and to recommend that I fill in the patient profile details completely for best results. They offer a free t-shirt once the dePatients tails are complete and one can become a Conditions 3-star member, which has its own perks.

Treatment Symptoms

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questions How does this collaborative platform induce innovation in the healthcare industry?

What is the artifact that comes out of the work?

PLM follows what they consider four core values: 1. Putting patients first 2. Promoting transparency 3. Fostering sharing “openness” 4. Creating a “wow” factor (they want everyone to be astonished by what they offer) They are guided by these values and by aligning patient and industry interests through data-sharing partnerships on a social network like platform. The site connects people with others who have the same disease or condition and track and share their own experiences. In the process, data is generated about health issues that help trusted PLM partners - researchers, pharmaceutical companies, regulators, providers and nonprofits develop more effective products, services, and care. These are a few companies from the long list of partners: Union Chimique Belge - award winning multinational biopharmaceutical manufacturing company that promotes neuroscience research Novartis International AG - Swiss multinational pharmaceutical company ranked #2 in sales Sanofi S.A. - French multinational pharmaceutical company, world’s fourth-largest by prescription sales Acorda Therapeutics - US based biotechnology company that develops drugs that improve neurological function (multiple sclerosis, spinal cord injury and central nervous system)

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More Understanding Of the Business Model

PatientsLikeMe does not allow advertising on its site. The data generated via the shared experience posts about disease & treatments are sold to their partners that develop or sell drugs, devices, equipment, insurance, and medical services. Major believers in transparency, PLM informs their members of their policy that all information submitted (even if it’s not currently displayed) may be shared with their partners and members of PatientsLikeMe, including other patients, except for certain restricted personal information.

They claim to “not rent, sell or share personally identifiable information for marketing purposes or without explicit consent.” They describe themselves as “a for-profit company with a ‘not just for profit’ attitude.” They turned the premise of sharing data into an income generating business model, with the goals of accelerated clinical research, improved treatments and better patient care by helping partners in the healthcare industry better understand the “real-world” experiences of patients and the “real-world” course of disease.

evoling into an online lab

One could say PatientsLikeMe is evolving into an e-lab. Today the website includes more than 1,200 health conditions, with new members joining daily from the US and countries around the world.

They boast the largest online population of ALS patients in the world with more than 4,500 members.

In the United States, approximately 10 percent of newly diagnosed ALS patients register on the site each month, and 2 percent of all multiple sclerosis patients in the US participate in the community. Their numbers after 11 years in business are as follows:

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More than 220,000 members 2,000+ conditions addressed 35+ published research studies Over 1 million treatment symptom reports

and

James Heywood, co-founder of PatientsLikeMe also founded ALS Therapy Development Institute in 1999 when his brother was diagnosed, to accelerate the development of new treatments.

Not only is it the world’s first non-profit biotechnology company, it’s the largest dedicated ALS research lab in the world, and has become widely recognized as one of the most promising and innovative research organizations.

Conclusion

It’s not all perfect for the PLM model. There are still improvements to be made. Although responses from the patients can tell a lot about the effectiveness of the care they are getting, and how well specific treatments are working, “delivering the question in a way that yields useful answers isn’t something that’s done very well right now” (Health 2.0). According to James Heywood, “there are flaws in the measuring tools” (Health 2.0). Luckily, the Robert Wood Johnson Foundation, a healthcare philanthropy organization, awarded PatientsLikeMe a $1.9 million grant back in February of this year to try and resolve this problem. And they created Open Research Exchange - the “world’s first open-participation research platform for creating health outcome measurements” (Open Research exchange), which allows researchers “to pilot, deploy, share, and validate new ways to measure diseases” (Information Week). So the future of this platform may be bright after all, as they seem to have a knack at not only innovating, but obtaining grants. And funneling the funding back into the business.

Members in 2009

Members in 2011

HIV

3,494

ALS

4,500

MULTIPLE SCLEROSIS 32,198

Patient Sharing

Data Mining

KAPOSI’S SARCOMA 26

Medical Advancement

Digital & For-Profit Platforms conclusion

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As evidenced through HealthTap and PatientsLikeMe, small technology companies are creating meaningful platforms that meet particular patient needs, improving the patient experience outside of the traditional healthcare model. For example, both HealthTap and PatientsLikeMe seek to put health information back in the hands of the patient. For HealthTap, this is accomplished through the ability to ask questions to licensed doctors and search through previously answered questions related to a particular area of interest. For PatientsLikeMe, the platform enables patients with the same condition to discuss their treatments and share their experiences. Both educate the patient in a way that empowers them to be an active participant in decisions related to their continued health and wellbeing. In addition, both companies are using their digital platform to enhance and complement the physical aspects of care in the health industry, not replace it. HealthTap founder, Ron Gutman, believes that his platform would enable doctors to focus more on serious issues during doctor’s visits, instead of having to answer frequently asked questions that are captured on HealthTap. Similarly, PatientsLikeMe provides a community where people can discuss procedures and treatments, but the site has strict guideline which make it clear that the site is not assigning a diagnosis or proposing treatment. If asked, both sites’ owners would argue that there is no real replacement for in-person health care, but that their sites may enhance the way in which it is delivered. Finally, HealthTap and PatientsLikeMe are both patient-centered platforms that can be personalized. The functionality of both sites enables users to create a profile and experience that best fits their health needs.

These companies’ business models, while for-profit, both seek to improve patient-centered care as well. At HealthTap, they have Hacking4Health and are developing partnerships with developers to use their data for the public good. PatientsLikeMe is a health data-sharing social platform which sells the generated data to industry in order to improve medical research and patient care while earning revenue.

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leading practices in innovative healthcare platforms

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These trends will most likely influence the disruption of healthcare starting with its doctor-patient model in the post digital revolution, based on the practices identified in the case studies of Timmy Global Health, Partners in Health, HealthTap, and PatientsLikeMe. Offering the desired service at a low or no cost, without the infrastructure of a traditional hospital.

The use of big data strategically to aid organizations on deciding how they should evolve, without knowing consumer behavior and health trends, they are evolving without a clear path.

Health organizations should design their solution not for their patients but with their patients, achieving a clear understanding of their needs.

Create social engagement that will aggregate to data collaboration which will result in the creation of big data at a low cost.

The cloud is the future of health services providing quick and easy data storage, privacy and mobility.

It’s not just about diagnosing and treating patients anymore, but also educating them, so that they can make more informed decisions based on their health in the future.

The traditional communication model between patients and doctors through doctor’s visits no longer meets the needs of today’s overcrowded and expensive healthcare industry; solutions that provide lower costs and better outcomes are needed.

A patient’s specific needs are not being met or addressed within the current system; patient-centered, personalized experiences should be curated. By being present at the right time and at the right place; health care must offer mobility.

When a social-sharing platform is involved, transparency is key. The members must be made aware that aspects of their data will be shared and open to the public. And that the data will be sold and to whom if that’s in fact the case.

Establish trust with transparent and open communications, fostering effective collaboration by having patients inherently the center of the organizations business model.

Leverage partnerships with like minded businesses and organizations to achieve innovative practices with more success, on a bigger scale, and with a wider audience.

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