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TASHIA: Show q&a - how Patients Like Me makes moneyInvisibility of cash flow – third party and no ads, etc.Purpose – rare conditions and knowledge sharingLack of disclosure about data farming
Show Philosophy of OpennessJESS: PLM believes in open sharing of personal info, but they do not share company info and income generationPLM does not openly disclose third party contributors who may have access to patient dataPseudo privacy with Pseudonymity – future implications of sharing such information without more advanced privacy controlCreating patient profile – anyone can join, but not as a researcher, under the desire to share knowledgeLack of User control over info: Centralization of PLM user experience without transparency of profit structure and third party contributors
JESS:What do patients get?Options for sharing knowledge - limited
TASHIA: MEDICINE 2.0Centralized
TASHIA: CENTRALIZEDEXTREMELY PERSONALIZED
TASHIA:Openness between professionals and other users- different levels of gatekeeping
TASHIA:PROBLEMS:Profit vs. nonprofit – values on each side and conflictsCentralized professional feature and decentralized knowledge sharing feature
Patientslikeme:<br />An Analysis of Medicine 2.0<br />TashiaSutantio and Jessica Wallner<br />
PLM Transparency<br />“No surprises. Our members shouldn't be surprised by anything we do. Our goal is to disclose what we do with members' information, how we make money, as well as all of our partnerships on the site.”<br />Structure of the Company<br /><ul><li>Finding Company info
Where does info go?</li></li></ul><li>User Openness<br />“We believe privacy has hindered the effective development of new treatments and shared understanding of how to manage disease.”<br />Philosophy of Openness<br /><ul><li>Sharing Information
User Control</li></li></ul><li>Knowledge Sharing<br />“We believe that sharing health information is good. Why? Because sharing and openness will drive massive improvement in healthcare.”<br />Data to Information to Knowledge<br /><ul><li>Patients provide data to research companies
Daily Strength</li></li></ul><li>Feature Modifications<br />PatientsLikeMe<br />PROBLEMS:<br /><ul><li>Conflicts of interest
Profit vs. Openness, Transparency, and Knowledge Sharing</li></ul>PROPOSAL:<br /><ul><li>Propose split between PatientsLikeMe as a non-profit organization focused on knowledge sharing and for-profit data sharing company
Close PatientsLikeMe to members only</li></li></ul><li>Business Model<br />
Improved Transparency<br /><ul><li>OPTION to give data to for-profit company– when creating a profile, you are presented with an open disclosure and asked if you want to share your data
Add prominent tab for About Us - includes affiliations and interests of the PLM Organization and For-profit Company</li></li></ul><li>Example of Transparency<br />
ImprovedOpenness<br /><ul><li>Protect Information - PLM is closed to all non-members
User Autonomy - can add treatments, symptoms, forums, etc.
Condition Resource Pages – All users can add condition pages and paid members can add links to resources about the condition, including Forum page and free members can benefit from collective knowledge.</li></li></ul><li>Example of Openness<br />
ImprovedKnowledge Sharing<br /><ul><li>Share Data – patient to Patient sharing of data as well as the opportunity to share data for medical research
More Communication Tools - Patient to Patient personal information and knowledge shared via personal messaging, chat, forums, etc.
Q&A Page – A few chosen medical professionals, with available credentials, each have a blog where users ask questions</li></li></ul><li>Example of Knowledge Sharing<br />
To Conclude…<br />Our own transparency:<br /><ul><li>Preliminary proposal
Our aim is to focus on values in modification, but without detailed business information we cannot say if it would be profitable