We started the People Matter Project because, after 70+ peer reviewed publications, we wanted to try a different approach that would really get people to think and maybe even to innovate in research practices. With the help of some friends, we have made our first video, and have more in the pipeline. These are open source – feel free to share widely – and are meant to prompt dialogue. Join a conversation, share an innovative practice you are doing, challenge us and together we’ll get smarter, faster.
The Future of Research is being decided now! While we are fortunate to have a robust system of protections in place that help assure research will provide more benefit than harm, the regulations that guide research with human participants have been in place for 40 years. Society is changing, technology is changing, the capabilities and interests of all of us are changing. We need to evolve our research systems too. It is increasingly hard for one group to decide what would be considered a benefit, or a harm, for another. In this new People Matter Project video, we call to institutions and Institutional Review Boards (IRBs) to think creatively about how to conduct trustworthy research in this changing climate.
In just one example of this, a five-site research consortium was asked to send the collected raw research data to a central federal repository so other researchers could use the resource that had been created with public dollars. In each case, the IRB reviewed the request. In four of the five sites, the IRBs ruled using the current guidelines that state “de-identified samples or data” are no longer considered human subjects, and therefore do not require consent. In the fifth site, the IRB decided that sending data, including genetic information, outside the healthcare system was something different enough that they would need to talk with enrolled participants about that, and in fact, get an additional consent to send the data. Maintaining member trust was a top priority. The curious thing is that when approached again, a very high number of people said “yes, fine to send my data” (86%). Even more curious, they went on to say “and it was important that you asked me” not just notified me (90% of those who said “yes”). For more details about this story and example of how one institution set their own standard of excellence and trustworthy practice, see Evette Ludman and colleagues’ paper: “Glad you Asked” in the Journal of Empirical Research on Human Research Ethics (2010) and also Susan Brown Trinidad and colleagues’ terrific commentary on the issue of changing research climate in Science 2011.
These videos are excerpted from the full version of Partners in Science, for viewers who prefer short, concise content. We divided the full version into two shorter segments that can standalone or be viewed together.
More and more, people are being invited to join in research registry or specimen collections, sometimes called “biobanks”. In this new People Matter Project video, we take 3 minutes to tell a quick story of the “life of a sample” to find out what happens to your blood or leftover tissue when you leave it behind at the hospital. Each institution is different, and you should ask questions if you are curious or worried about how it works where you are getting your healthcare or when invited to join a research registry. And tell us what you think!
Can we do a better job of engaging people in research, from beginning to end? These folks have some ideas for us to think about (6 minutes of your life – but it will leave you thinking!). If it makes you think of questions, ideas, or examples of innovative work, get a dialogue going here and we’ll post links to the best resources and examples you can find under “Innovation” as we get launched.