Dear Research Advocate:
The loss of American Icon Robin Williams has riveted national attention on suicide, one of the 10 most common causes of death in the United States. Today, we are releasing our updated fact sheet on suicide that you can use when meeting with lawmakers and educating others about the impact research can have. Efforts to prevent suicide rightly draw on research findings. But progress has been painfully slow, stymied by serious gaps – partly due to severely limited funding – in the basic research base that precedes private sector development, and stymied by the equivalent of handcuffs placed on social science research.
The notion promulgated by some in the Congress that social sciences research doesn’t add enough value to merit federal funding is not just unfounded, it’s holding us back. Social sciences research saves lives. Case in point: behavioral research guided the development of a suicide intervention that was pilot tested in schools in Georgia and Connecticut and resulted in a 40% reduction in attempted suicides. It has since been implemented in schools across the country. This is just one example of social sciences research at work.
Research moves faster when patient advocates engage. This is the history of the nation’s commitment to defeating polio, to ramping up HIV/AIDS research, to prioritizing breast cancer research and women’s health research overall. Writing in the New Yorker last month, Seth Mnookin described the impact that “dedicated … well-informed families” can have in pushing progress. In his responsive letter to the editor, Peter L. Saltonstall, CEO of the National Organization for Rare Disorders, focused on the use of social media by patient groups to establish global registries, taking full advantage of abilities we didn’t have just a few years ago, and in so doing, saving lives. But there is another message here. The research community must work more closely with patient advocates in order to drive medical innovation. As one of the researchers in the Mnookin article said, “Gone are the days when we could just say, ‘We’re a cloistered community of researchers, and we alone know how to do this.’”
And speaking of effective patient advocacy, the Parent Project Muscular Dystrophy (PPMD), a Research!America member, in typical “make progress happen” style, has drafted and submitted guidance for speeding the delivery of treatments to patients. The FDA welcomed the Project’s work; it is under review. Bravo to PPMD for setting an example for patient advocates, and illustrating for us all that there are many ways we can engage to make a difference.
Meanwhile, FasterCures is launching a major effort to engage patients around reimbursement and coverage. If insurers – public and private – refuse to cover a new treatment, who will gain access to it? Cut-rate reimbursement for today’s medical advances stifles investment in tomorrow’s medical discoveries. The FasterCures project recognizes that the first step to influencing coverage and reimbursement decisions is to understand how those decisions are made. See more here.
To hear more about paradigm shifts in our research ecosystem – including the role of patients and advocates – and explore the future of medical and health research, please join us for some straight talk at Research!America’s National Health Research Forum. This year’s Forum will be held on Sept. 11 at the Newseum. To register to attend, please click here.
Finally, do you know someone looking for an exciting opportunity to join our team for a few months in the Washington, D.C., area? We are currently accepting applications for paid interns and a fellow to work full-time in our offices alongside our policy team. Please share with your networks!