The Health 2.0 conference series came together several years ago around the idea of “user-generated health care,” a new generation of health care where digital tools and mobile technologies empower the consumer to take charge of their own health, an idea that is fundamentally reshaping the health care system.

This past week, Spring Health 2.0 in San Diego brought together a cross section of innovators in the health care industry – start-ups, developers, payers, providers, user-interface designers, technology providers, and others – to showcase and discuss bleeding edge technologies and services in health care that enable consumers to manage their health and connect stakeholders across the health care ecosystem.

One of the key themes discussed was The Evolution of Research, and the new role of user engagement in research. Often cited as the greatest untapped resource in health care, the role of the patient is undergoing a significant transformation. How do we best engage patients at every stage from prevention to chronic illness management and everything in between? What is the most effective way to tap into this resource to provide better care? How does our current health care system need to adapt to accommodate this shift?

Here are a few thought provoking takes from Health 2.0 on the future of medical research and where we’re headed.

Patient Potential

We’re beginning to understand that health goes far beyond the annual doctor’s visit, or trip to the emergency room. It happens every day in what you ate, how much you exercised (or didn’t) or how much sleep you’re getting. Our daily living significantly impacts our wellness, and is starting to integrate into clinical care. Nikolai Kirienko, Project Director of Crohnology.MD, has an incredible personal story about his struggle with Crohn’s disease. He used his own daily observations about his health, captured on his laptop, to save his own life. He discussed how care decisions are navigated at the patient’s bedside, and often times patients have only their voice and experience to assist in their treatment. Nikolai started Crohnology.MD, a grantee of Project HealthDesign, to help close the information gap between patient and physician. The initiative helps patients with Crohn’s create a personal digital narrative that empowers them to have more meaningful conversations with their doctors.

Finding vs. Creating Data

The entire model behind how we engage with research is evolving because today we have an abundance of data being generated as a by-product of care. Paul Wallace, Medical Director for Health and Productivity Management at KaiserPermanente (client), pointed out how 15-20 years ago researchers didn’t have medical data available to them unless they went out and created it. Research today is becoming more than pure data collection for study exclusively by clinical researchers. Since data is abundant and more open, there is a wider audience of data “users” from physicians to health care administrators, patients and payers.

Mining the Richness

The other question is how to effectively use the explosion of data to improve health and wellness. The US Department of Health and Human Services’ (HHS) Community Health Data Initiative is an example of the new mode of data sharing. By openly supplying vast amounts of free, high-quality data, they hope to inspire action among innovators across the ecosystem, who can act on the data to find useful insights or applications, and create new products and services. HHS, for example, is working with Health 2.0 Developer Challenges to inspire the creation of compelling apps that synthesize open health data to create significant benefit for the public.

Open Sourcing Treatment

Digital tools and resources are enabling collaboration across the research lab, doctor’s office, hospital, and even patient’s home. This advent of collaboration is paving the way for new approaches to tackling diseases. The Chordoma Foundation provides a case in point. Several years ago founder Josh Sommer realized that the landscape for Chordoma research was quite small and rather disconnected. Since then he’s been dedicated to overcoming one of the main obstacles to research in this field, collaboration. He noted that there is a current lag of about one to three years, from the time research data is generated to the time it’s acted upon. By speeding up the process and pushing information from the labs that collect the data to labs that can follow-up on it more quickly using simple tools like Google Groups and directories, they’re creating a new model for rapid discovery and treatment of disease.

Image credit: tabithahawk

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