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Patients are increasingly becoming active partners in both their own care and efforts to improve the healthcare system. We are learning that this involvement can result in more effective and efficient care and better outcomes. To illustrate this powerful new resource, we provided support to Health Affairs, as part of our support for their 2013 theme issue on patient engagement, to produce three videos about how this engagement is contributing to healthcare decisions and improved care. The participants—patients and other community members, caregivers, clinicians, and others—share their inspiring stories of how they became involved in health care and what they’ve achieved.

Health Affairs Video Screenshot
Click to view the videos on the Health Affairs site

As part of that engagement, patients and caregivers are also becoming more deeply involved in scientific studies that evaluate the effectiveness of care and its delivery. Instead of being only study subjects, they are now research partners, contributing their perspectives to strengthen the projects to make findings more useful in aiding decision making by patients and those who care for them and in improving the outcomes patients care about most.
Several of the patients, community members, clinicians, and researchers featured in the videos have been team members on studies we fund. 

I’m pleased to tell you that I had the opportunity in a recent blog post on the Health Affairs website to describe three PCORI-funded pilot projects as examples of how patients and community members are helping researchers formulate the questions to be studied, make the best clinical comparisons, look at appropriate populations, and focus on the outcomes important to patients. These projects address:

I also highlighted a patient advocate for underserved communities who appears in the video and is working closely with PCORI to bring the voices of patients into the research process.

Please let us know whether the videos and my Health Affairs blog post help bring the concept of patient-centered outcomes research to life for you.


Sheridan is PCORI’s Director of Patient Engagement

 

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