No more shall you sit back submissively and take whatever drug or treatment your doctor suggests without having some knowledge and asking a few questions first.
That’s what Dr. Nancy Marlett, PhD, hopes for anyway. She’s the director of community rehabilitation and disability studies and is an associate professor in the faculty of medicine at the University of Calgary. She is also a co-author of Grey Matters: A Guide to Collaborative Research with Seniors and team member of a two-year pilot program engaging Albertans to be involved in the direction of future health-care studies.
“For a long time we had this fantasy that you’d go in and the doctor would do a blood test, find the right pill and then you’d be back to normal,” she says. “That just doesn’t work anymore.”
Giving patients the right tools and confidence to research topics effectively enables them to be actively involved in discussions the medical community typically holds behind closed doors.
The most immediate goal for her team, Marlett says, is to train and certify patients as patient engagement researchers (PERs). This research approach is the first of its kind in the world and, therefore, is creating a culture shift.
Her book, Grey Matters, details the events of how she was approached by a group of seniors tired of being ignored or taken advantage of when asked to provide health-care feedback by their doctor’s office. Nothing ever came of their efforts. They wanted a say in the topics chosen for clinical research that doctors, scientists and funding organizations typically determined.
A two-year pilot study specific to osteoarthritis began in September 2011, funded by the Canadian Foundation for Health-Care Improvement. The first research group consisted of eight people from all walks of life (non-professional researchers) willing to participate in an intense one-year training program – the equivalent of four graduate courses, Marlett says. Participants learn how to do specific qualitative research about health experience and complete an internship where a group creates, conducts and publishes a research project.
The pilot study triggered interest on the part of more health-care providers, and Marlett’s team currently has five different internship PER-study projects on the go at various stages of approval by Alberta Health Services and ethics boards. Three are connected to the osteoarthritis cohort and a new group of 15 students split into two study focuses: chronic illness and cancer. Some cancer patients within the Wellspring Calgary (wellspringcalgary.com) network are part of this second round of studies. “They came into it because they were interested in research, learning something new and they wanted to be part of changing the health-care system,” Marlett says, adding that employers of PER participants who are also working full-time, have given them time off to take part in this program.
It’s not an easy program to commit to: those considering it need to have the time or job flexibility to dedicate about two-and-a-half days of class time and group projects a week for four months, followed by a six-month-long internship. “It’s a big commitment to do this kind of work, so people have to buy into it,” Marlett says. There isn’t a promise of a job after training, but all fully-trained participants so far have positions with the Strategic Clinical Networks (SCNs), research committees or others connected to these studies in a paid capacity. Starting in 2014, there will be two streams of study: course credit will be granted by the community rehabilitation and disability studies in the faculty of medicine to apply towards a degree and a professional certificate of completion will be awarded for those not seeking course credit. The work by Marlett and her team has just become recognized as an official university program within the Institute of Public Health. “It’s an emerging science that’s developing and I think there’s an excitement around that,” she says. “We’re looking at the sceince of health experience.”
To get more information about PER, contact project co-ordinator Dr. Svetlana Shklarov at 403-220-5383 or firstname.lastname@example.org