Q&A with Dr. Virginia Vandall-Walker, Associate professor Faculty of Health Disciplines

November 2014.

This was a competitive process. To be eligible, applicants needed to hold an academic position at an Albertan University, and have a program of research related to the focus of the Patient Engagement Platform being applied for. The application process included the submission of a curriculum vitae and letter of interest, along with three letters of reference. Once short-listed, I was interviewed by, and then I presented to, the ABSPORU Steering Committee members about my vision, mission, and process I envisioned to develop the Platform and promote patient and researcher engagement in health research.

Although I was considering winding down my career as I was nearing retirement age, this opportunity looked to be one that I had been preparing for my entire career. I was excited by the challenge and potential to promote patient and family engagement beyond my clinical and research focus area of family centered critical care. With my husband’s encouragement (he had just retired), I applied.

Essentially, I lead the direction and initiatives undertaken by the Platform and serve as the voice of patient and researcher engagement on ABSPORU’s Management Team. I developed the mechanism for including patients on the ABSPORU Steering Committee, and I represent ABSPORU on the National Patient Engagement Working Group and in the International Network of countries involved in patient and researcher engagement.

My responsibilities have included developing a five-year business plan for the Platform and hiring and orienting staff (currently six people). With my team, these responsibilities also included working collaboratively to promote patient engagement with other ABSPORU Platforms; enabling health researchers in planning and training to have meaningful patient engagement in their studies; initiating a patient/family registry of Albertans interested in engaging with researchers as partners in research; developing and offering educational opportunities for patients and researchers; leading demonstration projects; presenting about the patient and researcher engagement within the universities and across the province; and publishing reports and articles in peer-reviewed open access journals.

I am finishing up a demonstration study conducted with a Parent Advisory Committee (PAC) (Belur, Sanders, Sahlin) and researcher partners (Amirov, Rasiah, Roduta, Roberts) where we evaluated a respiratory specialist’s practice of providing parents, at the end of the visit, a hard copy letter that summarized his findings and recommendations.

My involvement was initially in relation to recruiting and facilitating researchers’ engagement with parents in the development of the study and survey. This study was specific to getting parents’ perspectives about the value of receiving the specialist’s EMR letter.

This “Specialist’s EMR Letter” study began over a year ago at the request of a specialist who was providing such letters to parents. He approached me, following a lecture I gave about patient and researcher engagement, and he wanted to understand what parents thought about the practice of providing them with a letter.

He did not have systematic feedback and often never saw the patients again so he was being questioned by colleagues about the practice. Therefore, he wanted evidence to support his practice. He also wanted to have parents on the team to help tease out the research project (or study) and help with survey development and analysis. Having parents on the team helps provide feedback from their expert perspectives as parents and turned the original survey into one that parents were more likely to complete.

There are other research projects that I am involved with but certainly, one key project led and managed by the PE Platform that I Lead, was the Depression Priority Setting project – which occurred over an 18-month period and was quite successful – see some of the many media launch-related information (links below).

CBC Edmonton | CTV Edmonton | Edmonton Journal | Alberta Innovates

Getting involved as a partner with a health research team can better ensure that the patient voice is heard. While the researchers may be the experts in their field, patients and family members are experts in their experiences with an illness or health situation. All perspectives need to be valued and considered. Patient and researcher engagement in health research is a practice that will promote a more inclusive look at a research topic. The results should then be more applicable to ultimately improving the health of Canadians.

There is no average! I am contracted to work six hours a week as the Lead of the Patient Engagement Platform, but I have been working almost full-time in this capacity. I recently began a year-long sabbatical and will be continuing as the Lead but leaving much of the day-to-day work to my competent and experienced staff:

Jananee Rasiah, Director; Lisa Petermann, Program Educator/Liaison (Calgary); Kiara Krawec, Project Coordinator; Elizabeth Manafo, Research Coordinator; Gilda Sanders, Editor; Ingrid Nielssen, Administrative Assistant

As mentioned, since I am on sabbatical, my short-term goal is to pull back from most operational activities and leave the day-to-day running of the Patient Engagement (PE) Platform to my staff. I will remain involved in writing for publication and for courses, in governance of the Platform, looking into SPOR 2.0, and in investigating the feasibility of co-hosting a Global PE Symposium in 2020 with CIHR, our provincial Support for People & Patient-Oriented Research & Trials (SUPPORT) Unit and international Network partners and Athabasca University.

My involvement as Lead of the ABSPORU PE Platform has ensured that AU is at the national and provincial SPOR tables. I promote AU to my SPOR colleagues and hope to have open access online modules about patient and researcher engagement available early in the new year, as well as a graduate course about engagement being developed.

If the Global Symposium does become a reality and AU helps with the technology, the overall visibility of AU will be increased, again, across the country and internationally. I would hope that AU students and staff would sign into the Patient/Family Registry to see how they can become partners in a research project of their choosing.

It’s primarily Alberta-focused, but I do work with my counterparts across Canada and internationally. The Platform also shares its products/deliverables across the country with other SPOR SUPPORT Units. We also have published five articles in key open access international journals.

The opportunities to engage as a co-investigator on major health research projects are many. I have to consciously decline invitations to do so.

I learned about Virginia Henderson in my undergrad—one of the pioneer nurse theorists, famous for her uncomplicated and straightforward definition of nursing: “The unique function of the nurse is to assist the individual, sick or well, in the performance of those activities contributing to health or its recovery (or to peaceful death) that he/she would perform unaided if he/she had the necessary strength, will or knowledge.”

That simple definition has underpinned all I have done in my career including this research engagement initiative, as did my many years in the North working and living with Indigenous peoples.