Stroke patients discuss need for patient involvement in research

December 3, 2014 – The first publications from the PROSPER study, headed by Adrian Hernandez, MD, MHS, appeared last month in the journal Circulation: Cardiovascular Quality and Outcomes.

The first publications from the Patient-Centered Research into Outcomes Stroke Patients Prefer and Effectiveness Research (PROSPER) study appeared last month in the journal Circulation: Cardiovascular Quality and Outcomes.

Strokes kill almost 130,000 Americans each year, making them the fourth-leading cause of death in the nation. Those who survive the initial stroke still face a poor prognosis: between 15% and 30% of stroke victims die within one year. Despite this, there is little quality research available on the effectiveness of existing stroke treatments.

Last year, PROSPER’s principal investigator, Adrian Hernandez, MD, MHS, received a $2 million grant from the Patient-Centered Outcomes Research Institute to conduct comparative-effectiveness research on stroke treatments. This research includes the participation of stroke patients. Three of these patients, who are also PROSPER co-investigators, discuss their experiences and the need for patient involvement in stroke research in the Circulation article.

“As patients, we must accept the responsibility of being advocates for our own health care, and we cannot do so if we are not empowered by a fundamental understanding of medical research,” they write. “To date, health care research and the general public have largely existed in separate domains. Yet, recent efforts to integrate patients into research teams hold significant promise for narrowing this gap and encouraging a much-needed paradigm shift.”

Hernandez and the DCRI’s Emily O’Brien, PhD; Ying Xian, MD, PhD; Gregg Fonarow, MD; DaiWai Olson, PhD, RN; Lee Schwamm, MD, also published a companion piece in the same issue.