LK 305Workshop: Why ePatient solution sharing is hard
Allowing ePatients to share tacit knowledge with each other about how they cope with their illnesses (see Susannah Fox's "Baker's Spatula" post) and what treatments work best for various conditions is a challenge that has yet to realize a full, household-name solution. Why isn't there a Yelp-like app for ePatients to share their solutions? Having worked on the problem for over 2 years we'll present specific challenges faced by ePatient innovators and generate ideas that will be the platform for a new generation and wave of innovation:
1) How to build the right culture for sharing. For example, when we asked ePatients to share treatment ratings and reviews, they initially skewed more scientific (efficacy and dosage). How do you create a culture of sharing tips, tricks, and workarounds that other ePatients would find the most useful?
2) How to overcome Yelp's 1/9/90 rule. That is that on most social networks, only 1% of users actively create content, 9% interact by commenting, and the other 90% only watch. This is particularly challenging for health solution sharing, because the most active 1% can only have so many health problems and share so many useful insights.
3) How to interact with existing ePatient groups. Facebook groups are rapidly becoming the dominant mode for connecting ePatients. Is there a way to allows ePatients to share solutions without competing with the way they currently interact?
4) How to surface the most relevant insights. Most people do not read more than a handful of reviews on Amazon when doing research. How can ePatients easily find the insights and treatment reviews that have proven most helpful to the community?
Of course, we have an app we will be releasing later this year that incorporates our best attempt at addressing the challenges listed above.
Brett Alder has lived two lives. In the first life he was a confident, super-energetic young man that could do anything. In his second life, his activities were constrained and largely defined by a chronic condition. He didn't just have poor health, he had a condition that was so rare that no doctor had ever heard of it, and so personal that he couldn't explain - even to people close to him - why he was struggling.
Because of these constraints, Brett has suffered without relief for years. He didn't just suffer alone, he also didn't seem to fit anywhere in the medical community. Medicine works great for known conditions, but he was having no luck breaking in. Occupying the outskirts of medicine, he had a chance to rethink what he really needed. It wasn't much. Just to connect with people having the same condition and find out what treatments worked for them. That shouldn't be too tall an order in today's hyper-connected world.
He finally discovered the name of his condition in 2011 after two major research papers were published and gained mainstream media attention. Brett soon joined and became a leader of an online community of fellow sufferers. With the support of his comrades in arms, he began to find relief with self-administered immunotherapy. Now having some extra energy, he used his background in software development to build a web app that would allow ePatients with any condition to connect, share solutions, and feel comfortable being their real selves. Brett wanted to realize his dream of a future where no one - regardless of how rare or personal his or her condition - would suffer alone. A future where treatment ratings and reviews were as freely accessible for medical treatments as they are for restaurants and books. The web app is called FeelAlike, and he thinks it's a decent start.
Brett is very excited to be attending MedX to learn more about ePatient advocacy and how to empower ePatients.