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Patients and caregivers are becoming more deeply involved in research that evaluates the effectiveness of different healthcare options. In the past, when patients were involved in research, they generally participated only as study subjects. Now, patients increasingly serve as members of research teams or advisory groups, contributing their perspectives to make research findings more useful to patients, focus on the outcomes that matter most to patients, and aid decision making about health and heath care.

Patient engagement in research was the subject of PCORI’s first live Twitter Q&A (#PatientHC), an hour-long event hosted by Health Affairs. This event grew out of our support for Health Affairstheme issue on patient engagement, published in February 2013, and production of three videos illustrating patient engagement in healthcare decisions.

I was pleased to address the insightful questions and respond to the thoughtful comments received (See the Q&A below.). It was great to have so many participants jumping into the conversation and sharing their views. Questions included:

  • How can patients with excellent research ideas connect with researchers to bring ideas to life?
  • What are some ways the researcher/patient relationship can be re-envisioned to be more egalitarian?
  • How can we get community health clinics involved in CER [comparative effectiveness research]?

One participant suggested, in typical Twitter shorthand, “Treating w/out understanding pt [patient] goals/values like getting in cab & saying take me to airport--You end up at JFK instead of LGA.”

Response to the event was overwhelmingly positive. I apologize to those who submitted questions that I didn’t have time to answer. Stay tuned--we plan to hold another Twitter Q&A soon. Hope you will join us then. Keep your eye on @PCORI on Twitter. 

For the more on our Twitter chat, check out Health Affairs’ blog post

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