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Creating a culture

Patient-driven research: Bridging the gap between results and implementation

By Heidi Wicks

Dr. Laurie Twells would like research results to directly impact the lives of patients, in ways that are important to them.

“A lot of the research I do in bariatric surgery and in infant nutrition has a strong focus on patient involvement, which ensures the research we do affects patients directly,” said the associate professor of medicine and pharmacy. “And this was certainly a draw in accepting my position with NL SUPPORT.”

The Strategy for Patient-Oriented Research (SPOR) is a national initiative led by the Canadian Institutes of Health Research (CIHR) focused on improving outcomes for users of Canada’s health-care system.

The SPOR initiative aims to create a research culture focused on achieving real-world impacts for patients and their families. In this context, patient-oriented research takes on patients as partners, addresses patient priorities and delivers direct impacts on patient outcomes.

“Patients are experts of their own health experiences.” — Dr. Laurie Twells

In order to support this initiative, CIHR funded the Newfoundland and Labrador Support for People and Patient-Oriented Research and Trials Unit (NL SUPPORT), along with 11 other similar units across the country.

Dr. Twells has taken on the position of scientific lead of the unit at Memorial, and is part of a team that provides support, training and funding for researchers who want to conduct patient-oriented research. This means that patients are involved in research by being included as a member of the research team.

Building better bridges, together

A typical day with NL SUPPORT involves supporting research teams across the university and the province.

A dedicated staff of knowledge brokers and experts offer a wide variety of services, including managing, accessing and analyzing large sets of health data; finding and liaising with patient partners; planning and executing knowledge translation activities; advising and supporting local, innovative clinical trials; and holding training events for new and experienced patient-oriented researchers.

From left are Dr. Hensley Mariathas, Chelsey McPhee, Dr. Laurie Twells, Catherine Street and Dale Humphries. Missing from photo: Dr. Holly Etchegary, Kate Lambert and Dr. Amanda Hall
Photo: Rich Blenkinsopp

“Bridging the gap between what we discover in health research and implementing those discoveries in a way that helps patients should be a key consideration for any project team,” said Dr. Twells. “But we don’t always think about how the patients want to be helped.

“Working in a patient-oriented way means including patients as equal partners on a research team,” she continued. “NL SUPPORT exists to help create a culture where patient priorities drive the research. Patients are experts of their own health experiences, and that expertise should be reflected in the project team’s direction. In this context, patients are highly involved and feel empowered to help guide the research and be part of making decisions, just like other co-investigators.”

Dr. Twells says that, while this is a significant change in the way project teams often work, it has the potential to produce an impact because patients can help identify research questions that are important and meaningful to them and their care.

“For example, patients living with arthritis can help determine whether the primary objective of a research study is on pain reduction or increased mobility, because they are the ones living with the condition every day,” she said.

Dr. Laurie Twells says patients should be involved in research because they are the ones living with the condition.
Photo: Rich Blenkinsopp

Now in its fifth year, NL SUPPORT funded projects have already improved or promise to improve patient outcomes in a number of ways, such as improving access to therapy for families with an autism diagnosis living on the West Coast of NL; helping breast cancer patients make informed surgical decisions in partnership with their physicians; finding low-cost ways for patients with diabetes self-manage foot care; and reducing unnecessary testing and low-value health care through a province-wide quality improvement initiative.

Follow the School of Pharmacy on Twitter @schoolofpharm on March 26  for further information on Dr. Twells’ work.

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