General Update

Greetings and Happy Spring!

The passing of the Equinox has brought change to PaTH and PCORnet. Perhaps the biggest news is that a non-for-profit organization, the People-Centered Research Foundation (PCRF), has been incorporated, and the PCORI Board of Governors has agreed to provide up to $25.4 million in infrastructure-building funds to support the long-term sustainability of PCORnet through the PCRF. Rob Califf, former FDA Commissioner, has been named Chair of the PCRF Board of Directors. Other PCRF Board members include: Richard Bankowitz, Executive Vice President, Clinical Affairs, America’s Health Insurance Plans (AHIP); Josephine P. Briggs, Director, National Center for Complementary and Integrative Health (NCCIH); Marc M. Boutin, Chief Executive Officer, National Health Council; Donna Cryer, President and CEO, Global Liver Institute; Craig Lipset, Head of Clinical Innovation, Global Product Development, Pfizer; Reed Tuckson, Managing Director, Tuckson Health Connections; and Joanne Waldstreicher, Chief Medical Officer, Johnson & Johnson.

More locally, the PaTH team has also seen growth and new opportunities; here are just a few examples. Numerous PaTH studies are now well underway and even starting to publish findings. Despite receiving the green light to initiate recruitment months after the first site, PaTH was the second-highest recruiting network in the ADAPTABLE trial as of May 5, with 500 patients recruited across five sites as of May 2. The PCORnet Bariatric Study has submitted its first paper for scientific publication – all PaTH sites contribute data to this large observational comparative effectiveness study. In addition, a new PaTH-affiliated study has recently funded: PaTH collaborators, Drs. Jeanne Clark and Wendy Bennett, will receive funds for an Obesity Center within the Strategically Funded Obesity Research Network from the American Heart Association; one of the new Center’s projects will occur at several PaTH sites (see Cohort Update article below).

Jim Uhrig, a PaTH patient partner and Executive Committee member, represented PaTH at the Health Datapalooza meeting in Washington, D.C. on 4/27 with an invited presentation about two of our network’s stakeholder engagement innovations: the PaTH Network Protocol Review Committee and the MyPaTH Story project. We’re also delighted to note that an option for listening to patients’ health stories online has been implemented in response to a suggestion from PaTH patient partners. Three stories are now posted online and more will follow. We hope that researchers hearing the stories will be inspired to develop patient-centered research projects to improve the way health care is delivered and that all listeners will gain a better understanding of patient and caregiver perspectives. Please stop by the webpage to listen and consider sharing your own story.

We are trying something new in this newsletter issue by weaving a common theme – that of the PaTH weight cohort – through a number of the stories. We hope you can spend a few minutes catching up with our recent progress, and we invite you to let us know what projects capture your attention and why.

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