How to Welcome a Patient Advisor to Your Research Team

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When it comes to caring for those with vascular disease, who better to tell surgeons and researchers the effects of various treatments than … patients?

Patients who have completed a comprehensive Patient Advisors Course will provide their perspective Thursday afternoon in “Patient Advisors Program,” 2:30 to 3:30 p.m., with a reception to further the conversation immediately afterward, from 3:30 to 4:30 p.m.

This session has been more than a year in the making, the fruition of a project funded by the Patient-Centered Outcomes Research Institute on “Connecting Patients and Researchers to Engage in Patient-Centered Vascular Disease Research.” Adrienne Faerber, PhD, at the Dartmouth Institute for Health Policy and Clinical Research is leading the project in partnership with SVS member Philip Goodney, MD.

Dr. Adrienne Faerber

Dr. Adrienne Faerber

“We’re hearing some of their stories: care that’s been great, care that’s been confusing, care that’s changed lives,” said Dr. Faerber. “The big thing here is listening to patients and what they have to tell us.”

The patients attending VAM have completed an online course aimed at patient collaboration with researchers and clinicians. Researchers, clinicians, and clinical leaders all should find the session valuable, said Dr. Faerber. Major funding agencies are moving toward requiring patients to give their input on research proposals, she said.

“And clinicians who want to improve their care of patients and clinical leaders who want to learn about leading change initiatives will want to listen to what they have to say as well.

“Patients are the experts in living with vascular diseases and we should be listening to them.”

Their experience encompasses far more than just their treatment, Dr. Faerber said of patients, with questions – even if they don’t know to ask them – that involve far more than “stent or surgery.”

“Surgeons tend to think of risks and benefits of procedures. But patients find the post-operative recovery a really important part of the experience,” she said. Surgeons should discuss pain management and any lifestyle restrictions; for example, a patient might not know until after surgery that he cannot drive for six or eight weeks.

“In the patient-centered view, that’s a huge issue,” she said.

“Providing good care goes beyond recommending a treatment,” said Dr. Faerber. “Clinicians need their patients’ input as to what they want, their values and beliefs.” Considering all those factors, plus lifestyle, “may change your thinking on the treatment decision.”

The Thursday session includes an orientation to patient-centered research and patient advisors, conversations with patients about their experiences and how clinics and hospitals can improve the patient experience of those with vascular care plus clinician and researcher reactions.

Dr. Matthew Corriere will discuss parallels between the patients’ stories to his work evaluating what matters to patients undergoing treatment, and Dr. Philip Goodney will describe how patient advisors have helped him improve his research portfolio.

The reception following the session will provide an opportunity to talk with the patient advisors and find out more about adding a Patient Advisor to a research or quality improvement team.

For more information, visit patientadvisorscourse.com.

Thursday, June 1

2:30 – 3:30 p.m.

SDCC, Room 17B

Patient Advisors Program

Moderators: Adrienne Faerber, PhD and Philip Goodney, MD

3:30 – 4:30 p.m.

SDCC, Room 17B

Patient Advisors Program Reception

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