Helping entrepreneurs navigate the health data universe

Data can be a barrier to innovation but it can also be a driver. Imagine the progress that could be made if smart, curious people could access the rich information they need to design, develop and deploy new solutions. This sentiment has been echoed within the walls at the Cambia Grove and throughout the health care system, from such renowned voices as Aneesh ChopraBruce Greenstein and Christine Bechtel, who all emphasized that we must crack the code on data if we are going to make real progress in the system.

But health data is a complex topic. Challenges and opportunities in this space vary greatly depending on perspective. To understand the full scope of opportunities, I embarked on a community exploration project during which I interviewed 74 stakeholders representing 55 unique organizations asking the question “what data-related barriers do you face as you work to improve the health care system?” The interviews covered all 5 Points of the traditional health care sector, including: Patients, Providers, Purchasers, Payers and Policymakers; the entrepreneur community; and enterprise organizations committed to innovation in health care.

Topics uncovered during the interviews ranged from issues with interoperability to data quality to patient identification. However, a common theme rose to the top: Change-makers in health care require rich, user-friendly datasets to power their efforts, whether the goal is to validate and test a new technology or to better understand a patient population. Moreover, while stakeholders knew that an abundance of data existed, they found it frustrating and often prohibitive when attempting to get their hands on it.

After digesting all the feedback, we quickly identified three needs:

  1. to make meaningful system-level change in health care, innovators need access to data
  2. the health data universe is crowded and complicated and needs to be streamlined
  3. there is a need to bridge the gap between data needs and the abundant data resources available

The urgency of these needs led Cambia Grove to define our inaugural CIC (Convene – Identify – Catalyze) Solution Series project. Launched in early 2018 to catalyze solutions to big system-wide health care challenges, the program gives us the opportunity to identify barriers to innovation and systematically tackle the highest priority problems as heard first-hand from our community of change-makers.

Serendipitously, we found that the solution exists within the community. We would interview a stakeholder who wanted access to a specific type of data (for example, synthetic clinical data), only to learn about a resource with that exact variety of data through a separate conversation days later. Even more surprisingly, we spoke with organizations who sat on rich datasets and wanted to get it into the hands of innovators, but didn’t know the best way to connect with the community.

As a commitment to our community to take action, we plan to build a Data Resource Directory that will be populated with valuable data rich resources, organizing them, and making them clear and accessible to our community.

To kick-start the effort, today the Cambia Grove is launching a crowdsource campaign to call for submissions from the community. The responses to this campaign will populate the dynamic, searchable, publicly-available Directory on cambiagrove.com, to be deployed later this year.

The early traction our campaign has received tells us we’re on the right path. We’re excited to share that the United States Department of Health and Human Services (HHS) and Fred Hutchinson Cancer Research Center (Fred Hutch) have signed up to join our directory.

HHS submitted HealthData.gov, a site that states that it is “dedicated to making high value health data more accessible to entrepreneurs, researchers, and policy makers in the hopes of better health outcomes for all.”

Matthew Trunnell, Vice President and Chief Information Officer at Fred Hutch shared the importance of this endeavor.

“Fred Hutch is excited to support Cambia Grove’s effort to make valuable data resources more accessible to innovators in health care,” Matthew said. “We are on a mission to have curative approaches for most if not all forms of cancer by 2025. We can only achieve it through collaborative science and technology partnerships. To display our commitment, we will contribute our cancer outcomes analytics and clinic notes datasets to the data directory. We invite the community to join us in building this resource and welcome conversations around collaboration!”

Thank you to HHS and Fred Hutch for enrolling in our Data Resource Directory. We are encouraged by their feedback and look forward to continued momentum from more participants throughout the summer.

We hope that by bridging the gap to valuable data resources, our diverse community of change-makers will face one fewer barrier on the road to a better health care system. We invite the community to join us on this journey!

Interested in learning more about the project? Please contact me at julie@cambiagrove.com.

To submit your data resource, please visit https://www.cambiagrove.com/data-resource-crowdsource-campaign.


Julie Panek Anderson is the Assistant Director of Programming at Cambia Grove.

This article was originally published here and was re-published with permission from Cambia Grove.