In an unconventional twist to traditional research funding, an Oct. 8 event at the Lily Lake Pavilion in Saint John empowered patient partners to judge and fund health care delivery projects to foster patient-oriented research.
Photo: Margaret Melanson, president and CEO of Horizon Health Network, acted as emcee for the Patients' Den event held on Oct. 8 at the Lily Lake Pavilion in Saint John.
Patients' Den is modelled after the television shows Dragons' Den and Shark Tank, but instead of entrepreneurs pitching for equity investments from a panel of venture capitalists, eight researchers pitched their research proposals to a panel of patient partners for funding from the Centre for Research in Integrated Care (CRIC) at the University of New Brunswick's (UNB) Saint John campus.
"We do patient-oriented research, which involves engaging patients on our research teams, not just as participants," said Dr. Alison Luke (BA'92), research associate at CRIC, which develops and evaluates patient-centred integrated models of health care for those with complex care needs and their families.
"They can be engaged in identifying research priorities, helping with recruitment and developing data collection tools such as interview questionnaires. They help with knowledge translation by getting our findings out to people who can use or learn from it," Luke said.
Dr. Shelley Doucet (BN'05, PhD'10), CRIC's director, said Patients' Den is part of this. "We want to build capacity for patient-oriented research and awareness of the importance of engaging patients as partners in research. Our goal is to build capacity for patient-oriented research and highlight the significance of involving patients as research partners. We also hope the audience will recognize the value of this collaborative approach."
Five patient panellists were recruited through a Horizon Health Network patient engagement website, as well as Facebook, Instagram, word of mouth and flyers.
- Kathryn Ferris, a long-time advocate and volunteer in Saint John with experience as a patient and caregiver;
- David Luke, who has experience in health care as a patient and caregiver;
- Carolyn McCoy (BHS'05), is a respiratory therapist and has experience in health care as a caregiver and advocate;
- Linda Wilhelm, president of the Canadian Arthritis Patient Alliance and an active patient advocate; and
- Jennifer Taylor, a nurse who retired early due to chronic illness.
The panellists, selected for their diverse backgrounds and experience, were trained to ensure fair and unbiased judging.
Margaret Melanson, president and CEO of Horizon, emceed the event, the third of its kind although the first held since the pandemic. Eight pitches were made. Presenters had seven minutes to pitch, followed by three minutes for questions from the panel and audience.
Four were from UNB master's students, each seeking a $2,500 grant, while four were from early career researchers, each seeking a $5,000 grant.
- Abigail Daley proposed an online acceptance and commitment therapy (ACT) for eating disorders, which rose sharply during the pandemic. The program aims to provide accessible treatment and reduce the burden on the health care system in New Brunswick.
- Faith Igogo explored the challenges faced by newcomer families in accessing health care for their children in Canada, including long wait times, communication barriers and cultural insensitivity. The study aims to inform policy and service improvements to enhance accessibility and inclusivity.
- Jayda Veinot examined dietitians' experiences providing care for food-insecure individuals in New Brunswick. Key needs include education, personalized approaches and better tools and resources requiring health care support to address this growing problem effectively.
- Amanda Duffie (BA'94) aims to understand solo-practice physicians' views on team-based primary care in New Brunswick and identify incentives for transitioning to it to improve primary care access.
- Dr. Petrea Taylor (BN'97, MN'02, C-MHN'06, PhD'18), an associate professor in the faculty of nursing at UNB, proposed a community-based intervention for women with suicidal thoughts, addressing the "compression" they face due to social rejection and lack of accepting spaces to discuss their experiences.
- Ali McGill (BN'02), an assistant professor of nursing at UNB, uses systems thinking to optimize newcomer health care in New Brunswick, mapping processes, engaging with newcomers and identifying tailored solutions to address complex access and navigation challenges due to systemic barriers like language, health literacy and cultural differences.
- Carly Demont is a research consultant with Vitalité Health Network researching youths' experiences seeking fetal alcohol spectrum disorder diagnosis, aiming to improve the referral process and drive positive outcomes through a patient-oriented systemic approach.
- Danielle Kent (MAHSR'22), director of research at Loch Lomond Villa, is exploring the use of nurse practitioners in long-term care homes to improve the quality of care and alleviate health care system pressures through a 12-month research project analyzing data from nursing homes with and without nurse practitioners.
The panellists questioned the presenters, and where time allowed, audience members did as well. A common concern of the panellists was how patient advisors could be integrated into the research.
The panel eventually decided on Veinot and Duffie as the $2,500 trainee awardees, while Demont and Kent were each awarded $5,000 in the early career researcher category.
"It's so exciting, as a patient, to be able to look at the research proposals and pick out those important to patients and people in the province. I enjoy it," said panellist Wilhelm.
"I participated in Canadian Institutes of Health Research peer review processes, and it's very powerful as a patient. I've been a patient in the health care system for 40 years, and having a say in research funding is just a great experience."
Doucet hopes some panellists stick around to help the CRIC.
"This is an opportunity for the panellists to learn more about health service delivery research and potentially join our research team. We are always eager to welcome new individuals, perspectives and experiences," she said.
"Many opportunities may stem from the evening beyond just being a panellist and deciding on the awards."
