The story of how PatientsLikeMe is using Co-Creation in healthcare.

1. Enterprise Co-Creation Stories The Story of PatientsLikeMe

2. Enterprise Co-Creation Is a Strategy and Methodology for Engaging Stakeholders to Create New Mutual Value ValueFruit ExperiencesBranches Value comes from new experiencesfor stakeholders New experiences come from new interactions InteractionsTrunk Enterprise Co-Creation: The systematic development of networks of individuals, stakeholders, and enterprises to create value together, through engagement platforms designed to enable mutually valuable interactions and experiences New interactions require engagement platforms… …which sprout from stakeholder engagement Engagement PlatformsSeeds Engagement platforms assemblenew networks and communities Networks NetworksRoots

3. PatientsLikeMe: A Co-Creative Community of Disease Sufferers PatientsLikeMe is an online community for disease sufferers, built around a co-creative business model PatientsLikeMe members self-organize in groups around different medical conditions Many members track their symptoms, treatments, and other health data over time, which helps them keep a record of the progression of their illness/condition and compare with others Patient experience with medication/treatments is aggregated, allowing efficacy and side effects to be studied PatientsLikeMe illustrates all aspects of enterprise co-creation – co-creation of value, new experiences and interactions, engagement platforms, and networks/communities

4. PatientsLikeMe is a Site for Disease Sufferers to Share Data and Experiences and Learn from One Another The site, which is free to join, focused originally on chronic diseases such as ALS and MS, but in April 2011, the site opened up to all diseases. It has registered dramatic growth in members: from about 25,000 in late 2008, to more than 55,000 in early 2010, to over 107,000 in mid-2011. Many PatientsLikeMe parti-cipantswelcome sharing PatientsLikeMe is the main reason that I concluded I had been mis-diagnosed depressive, instead of bipolar, and just recently decided to try new medication. – mood conditions patient

5. Many Individual Patients Share Data on Their Diseases/ Illnesses Over Time

6. Individuals Track Their Symptoms and Treatments Over Time Tracking symptoms and treatments helps patients keep a record of the progression of their illness/condition, which may assist them or their doctors with understanding the disease and proper treatments

7. Member Data is Aggregated

8. Member Data is Sorted in Different Ways Patient profiles Treatment reports Symptom reports

9. Patient Experience with Medication/Treatments Is Aggregated Efficacy and side effects of medication/treatments can be seen at a glance

10. A Sample Community: ALS

11. ALS Patients Among the Online Community

12. Other Parties, Such as Caregivers, Are Invited into the Communities

13. PatientsLikeMe Conducts Its Own Research

14. The In-House Research Is Based on Member Data PatientsLikeMe conducts its own research. It connects patients and researchers directly, but does not include doctors. PatientsLikeMe makes money in part from selling anonymous data from its members to customers in the research and pharmaceutical markets. The company has provided services such as customized research on patient health and Web-based surveys for pharmaceutical firms, including Novartis and 23andMe. In April 2011, the company published what it called a “patient-initiated observational study,” refuting a 2008 report stating that lithium carbonate could slow the progression of ALS. After 348 PatientsLikeMe members suffering from ALS reported their off-label use of the drug, the company facilitated a controlled study among members, finding that the drug did not have an observable effect on the disease progression of these patients.

15. How PatientsLikeMe Illustrates Key Co-Creation Elements New Value and Experiences Community and information-sharing for members Data aggregation and research stimulus for PatientsLikeMe New Interactions Members can compare treatment effects at a new level of specificity Unmediated, one-to-one and one-to-many communication among members PatientsLikeMe opens up the pharmaceutical research process Engagement Platforms The PatientsLikeMe website provides two engagement platforms: one for patients to share and compare information on their illnesses/conditions, and another for the company to aggregate data for use in pharmaceutical research Communities and Networks PatientsLikeMe is a series of communities in which members share an extraordinary amount of personal information The network effect of member data has created new possibilities for pharmaceutical research

17. Sharing experience can not only be empowering, it can also lead to co-creation

18. Co-creation can be the basis of a new business model

19. Co-creation is not about letting the community build something on its own, but rather enabling the community to build something better together with the company

20. Transparency is a principle of co-creation