Health Data for Action (HD4A), a research program of the Robert Wood Johnson Foundation (RWJF) administered by AcademyHealth, made access to big datasets available to researchers through competitive calls for proposals so they could use that data to answer important research questions and inform health policy -- questions that might otherwise go unstudied.
In this fifth and final installment of our interview series, moderated and facilitated by Kevin McAvey, Managing Director, Manatt Health, we look at a real-life example of how the right data helped lead to specific policy change for out-of-pocket costs for insulin.
How Research and Data Helped Lower Insulin Prices
Listen to 2019 HD4A grantee, Dr. Carrie McAdam-Marx, Professor and Associate Dean, University of Nebraska Medical Center, and Josh Caplan, Director of Advocacy, AcademyHealth, share how their collaboration sparked change. Carrie’s study examined how insulin out-of-pocket costs ranging from $0 to $50 affected patient adherence and diabetes-related outcomes. She discovered significant gaps in adherence when out-of-pocket costs exceeded $35 for a 30-day supply. As national policy discussions about insulin cost limits gained momentum during her study, it was an ideal time for Carrie to share her findings with policymakers.
This is where Josh stepped in. With his experience in making research relevant to people in governments, he helped Carrie navigate the complex policy landscape and hone her evidence into clear, concise messages. They worked collaboratively to identify and reach out to the appropriate policymakers and their staffers, develop key messages to share, and effectively convey findings. Ultimately, Carrie’s study contributed to the evidence that helped Congress adopt a $35 cap on insulin for everyone covered under Medicaid Part D.
Tips for Turning Research into Policy Change
- Engage with Policymakers: Engage early with the people who can use your research, especially policymakers, to better align your research and findings with what they need and can use
- Bust Myths in Research Community: Researchers often worry about being confined to narrow scopes of their expertise or lacking the skills to effectively communicate with policymakers. Have confidence in your ability to contribute to discussions beyond your specific research topics. Cultivate curiosity. Engage in learning to build and maintain relationships with audiences outside the research community.
- Understand Data Needs: Before choosing where to get your data, make sure you know exactly what questions you want to answer. This helps ensure the data you pick will lead to the answers you seek.
- Address the Cost of Health Care: Many things make it hard for people to take their medicine, such as inconvenience or potential side effects. However, the cost of insulin stood out as a significant barrier to staying healthy. This study highlights the crucial need to address cost-related issues in health care.
What surprised you?
Many researchers believe that they should stay quiet until they have findings, fearing that policymakers may not respond or that their early findings don’t say enough. By asking them what questions matter most and understanding the evidence they need to act, researchers can build trust and turn policymakers into allies. When findings are ready, those relationships can help move things forward. Carrie's study is a great example: by sharing clear data and insights through multiple channels (and not just peer-reviewed academic journals!) she made sure her work fed directly into policy discussions and reached a wider audience. Her study informed policy change that improved the lives of hundreds of thousands, potentially millions of people living with diabetes. Listen now!
Join us for this year’s Health Datapalooza on September 4 and 5 in Washington D.C. We’ll have interactive workshops, unconference sessions, and networking opportunities for data innovation stakeholders to exchange ideas and expertise.
Earlier interviews in this series are available here. LibreChat was utilized to generate key takeaways from the interview transcript. The substance of the post was written by a human author.