From redesigning patient experiences for veterans to reimagining clinical trials for cancer patients, I've been increasingly intrigued by what personalized health care of the future will look like. There is perhaps nothing more personal than health yet the system we've designed is less personal than most aspects of our life. There is always more to learn but in my ethnographic travels through the world of healthcare, here are a few thoughts on what we can do to start building a system as personal as health.
1. Embrace open-source culture. Open source has emerged as one of the pillars of modern software development and has shaped the way we now build (and in turn what we expect from) digital products. 'Open source culture is the creative practice or appropriation and free sharing of found and created content'. Because there is a culture of sharing and reuse, the result has been the development of better, more personalized products in a shorter timeframe. As is stands now, there are people, products, and services, bubbling aspects of open-source in healthcare. OpenEMR is striving to offer more personalized healthcare by offering free open-source medical records software that is then compatible and sharable. And I had the pleasure of working with CancerBase, non-profit hoping to bring crowdsourcing for the benefit of cancer patients. The idea being that people 'open-sourcing' their experiences and paths through cancer helps personalize care for the people that come behind them.
2. Build better platforms. Open source culture doesn't thrive without ways to share and exchange. Luckily, there have been multiple platforms that have risen alongside the sharing economy, such as Creative Commons, Github, and more recently data.world and Genomic Data Commons. But health takes a special type of platform. Patient data is highly confidential and currently exists in thousands of permutations. It is no easy task to create platforms that can translate, collate, and ultimately make for better patient experiences. (One good example is The Metastatic Breast Cancer Project). But I'm convinced it has to be one of main focuses in the near term if we have any hope of personalizing healthcare to the extent we expect from everything else in our lives.
3. Co-create with patients. From the hundreds of stories I've had the honor of hearing along the way, most patients connect with others when they enter a community or whatever health issue they are facing. We rely on people's experiences who have come before us, their support, and their context in a foreign land. (Just think Yelp but without the mechanism yet). Tons of data, stories, and advice is shared every minute about what patients want and need in order for them to have a more personalized health experience. But we aren't really tapping into that at all. In fact, it looks like the system does a pretty good job of shutting it out even. There are bright spots and we're getting better but there is a long way to go. I'd posit that one of the best things we can do in the short term is build the bridge between the current underground world of strong patient networks and the delivery system by having patients co-create products and services.
What are your thoughts on what would help us take some immediate steps to build more personalized health care for the future?