Meeting Up to Promote Patient-Centered Outcomes Research

Partnerships are basic to PCORI. In pursuing our mission to fund research that will improve the nation’s health outcomes, we know we can’t act alone. We work closely with patients, clinicians, and other healthcare stakeholders, as well as the organizations that represent them, to see that their concerns guide our research agenda.

So, we’re pleased to see that many members of the PCORI community are participating in Partnering for Cures, a major conference November 16–18 in New York City focused on fostering collaborations to more quickly bring new treatments to patients and those who care for them.

According to FasterCures, the sponsoring organization, the conference brings together players from across the broad realm of medical research—patient advocacy organizations, research institutions, industry, and health innovation ventures, among others. In short, our kind of people.

Putting the Patients in “Patient-Centeredness”

A plenary session highlighting models of effective patient engagement in clinical research and care will include three speakers associated with PCORI:

• Anne Beal, MD, MPH, our former Deputy Executive Director and first Chief Officer for Engagement, and now Chief Patient Officer at Sanofi
• Bray Patrick-Lake, MFS, of the Clinical Trials Transformation Initiative and a patient representative on the Coordinating Center Executive Leadership Committee of PCORI’s PCORnet, the National Patient-Centered Clinical Research Network
• John Walsh, President of the Alpha-1 Foundation, Co-Chair of the PCORnet Task Force on Patient Engagement, and President and Co-Founder of the Chronic Obstructive Pulmonary Disease (COPD) Foundation, the major participant in one of the 29 networks that make up PCORnet

A panel on patient-reported outcomes, patient preferences, and patient-centered outcomes research also has several PCORI-associated participants. The moderator is Kim McCleary, Director of Strategic Initiatives at FasterCures and a member of PCORI’s Advisory Panel on Patient Engagement. The speakers include:

• Joe Selby, MD, MPH, PCORI’s Executive Director
• Ethan Basch, MD, MSc, Director of the Cancer Outcomes Research Program at the University of North Carolina in Chapel Hill and PCORI Methodology Committee member

Innovations in Medical Research

Members of PCORI’s Board of Governors also will play important roles at the conference. National Institutes of Health Director Francis Collins, MD, PhD, will moderate a session on the future of medical innovation. Ellen Sigal, PhD, Chair of Friends of Cancer Research, will speak on a panel looking at innovations to the current paradigm of clinical trials.

PCORI-related speakers will also feature in sessions highlighting innovation. One of these describes how patients are serving as partners in the development of PCORnet and features PCORI Engagement Officer Jaye Bea Smalley, MPA, and Robert Shelton, MBA, Chief Executive Officer of Private Access, Inc., and a member of PCORnet’s Task Force on Data Privacy and of the Community-Engaged Network for All, one of PCORnet’s component networks.

Another innovator presentation will highlight ALD Connect, a PCORnet network that fosters collaborative research on a rare neuro-metabolic disease called X-linked adrenoleukodystrophy (X_ALD). Alex Sherman of Massachusetts General Hospital will describe the building of this nationwide research infrastructure to support studies on stopping and reversing the symptoms of the disease. Sherman is a co-investigator on two of the PCORnet component networks.

We’re thrilled to see many of our partners—and the important work they’re doing—represented at a conference highlighting the value of partnerships in advancing clinical research and care. And we look forward to the valuable information and potential collaborations that will come out of this event. In future blog posts, we’ll let you know what we and others learn there.

Smalley is an Engagement Officer in PCORI’s Engagement program
Greene is Associate Director of PCORI’s CER Methods and Infrastructure program