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What’s Important to Patients?

Tuesday, August 18, 2015

By Paula Miller

Over the past year, as a representative of ACHA, I have had the privilege of sitting on the Patient Engagement Council (PEC) of the Patient Outcomes Research to Advance Learning (PORTAL) clinical data research network, which is funded by the Patient-Centered Outcomes Research Institute (PCORI). There are 11 research centers in this network that is made up of four health delivery systems: Kaiser Permanente, Group Health Cooperative, Health Partners and Denver Health.

The PEC’s focus is to identify what is most important to patients by engaging 10 patient advocates from three different cohorts (adult congenital heart disease, colorectal cancer and obesity), as well as representatives from two patient advocacy organizations, ACHA and Fight Colorectal Cancer.

In Phase 1, which just concluded, PEC members attended 10 webinars and two in-person meetings. The intent was for the PEC members to provide input about engaging patients in research, identify research questions that matter to patients, and facilitate communication to a “broader audience.”

Another part of this program has been the recruitment of 18 advisors (including some ACHA Ambassadors) who are working with Smart Patients, an online community created to identify topics for online community discussion boards. Through this, patients and family members can learn about scientific developments pertinent to their individual disease.

Phase 2 of PORTAL has been funded for the next three years. Stay tuned for further developments.


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The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.

The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.

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