Next week, I’ll be attending PCORI’s (Patient Centered Outcomes Research Institute) Communication and Dissemination Advisory Team meeting in DC. Research is ink on paper until people at the center and clinicians receive the results in an understandable and useable form: communication, translation, dissemination. I speak with many of you about what matters to you. I hear you ask:
- How does research apply to me? For example, a study reports that one treatment is likely to result in improvement 40% of the time. This treatment results in 10% fewer people dying within 5 years than that treatment. 20% of people taking drug A are likely to have some nasty side effect. If research is about groups of people (populations), how do I know whether to take one path or another, based on research?
- Health care seems to be a Tower of Babel – communication is tough in the best of circumstances. How can we best communicate complex information from clinicians to people at center, from people at center to clinicians, or between specialists?
- How do my personal values, religion, or culture affect research results?
- The person I care for has changing ability to understand (getting older, more confused, etc.). How do I best share research results?
- What about research that isn’t published, doesn’t prove the hypothesis? It all seems so uncertain. How is that communicated.
- What about word of mouth, popular media, or social media? How do I know what to believe?
- If I am one of the people who is a subject in research, how do I protect my privacy?
I’m hoping that we begin to assemble a framework for understanding communication and dissemination of research. Right now it seems like such a jumble.