Patient testimonials

Patient Testimonial I

The PRioritiEs For Research (PREFeR) Project allowed me to expand my influence past the British Columbia Primary Health Care Research Network (BC-PHCRN) Patient Advisory and share these experiences in the interior of British Columbia. I speak about the PREFeR results regularly at community events (public libraries, universities etc.), in my social circle (retirees’ association), and as a participant at provincial and national conferences. Through these avenues, I am able to pass along the results of the PREFeR Project and my experience working with research. I am also able to discuss the value of being a patient partner and of including patient partners in research.

I spoke at the opening of the Royal Inland Hospital in Kamloops, BC, where I mentioned the PREFeR project. Through this event and my contacts in the Interior Health Authority research department, I was able to disseminate the PREFeR survey to patients and primary care providers who otherwise would not have been able to respond. My region of the province was well represented in the survey results because of my outreach.

Initially, it was difficult to disseminate the survey in my region of the province because the Interior Health Authority required that this survey go through Ethics first, even though other health authorities did not have this requirement. The investigator on the project and I were able to get it approved quickly by Ethics, and the result was that my region was very well represented in the final survey results.

Three of the top five priorities identified through the PREFeR project were adopted as priorities for the BC-PHCRN in their mid-term strategic plan, which has an effect on the direction and implementation of research in British Columbia, as well as putting a spotlight on this issue with leaders and policymakers in the British Columbia Ministry of Health.

Patient Testimonial II

As a patient partner, co-Investigator (Evaluating the Involvement of Patient and Family Advisors in Quality Improvement and Safety Teams in Nova Scotia), and advisor to BRIC NS, my participation in BRIC NS has allowed me to bring my experience with community engagement to primary and integrated health care research.

It felt like patient-oriented research was new in primary health care, but we’ve been doing it for a long time in the HIV research community. It felt like a good opportunity to bring my knowledge and experience. Working with the team (Fred Burge, Ruth Martin-Misener and Tara Sampalli) has been great. Again, you’re able to be as involved as you want to be. The team has been supportive and welcoming. I’ve been involved with abstracts, publications are to come, I’ve gone to conferences. With this project, I got to be a part of the patient interviews for the first time. I’ve done some coding with national projects but this time I was more involved in setting up the coding from the beginning.

The BRIC NS Incubator sessions are a great opportunity to sit in on a discussion, where you can just listen if you prefer, and appreciate how hard it is for a group of researchers to come up with a clear idea of what the project might be. You appreciate that no one is coming in with a clear picture of what will be done but you need to work it out as a team and the patient is just as much a part of the team as anyone else.

It’s so important to have patients involved because some of the most common-sense things are overlooked. When you live and work in a certain world, some practical things don’t come to mind anymore. Having patients involved helps to ground the project. When you’re in an academic or policy world you work in a bubble and you need all the people to bring their perspectives and concerns into the process.

Patient Testimonial III

Contributing to the BC SUPPORT Unit Vancouver Regional Centre Oversight Committee took my patient voice to another level and increased my knowledge and capacity to contribute meaningfully across the healthcare spectrum.

My Patient Partner journey began in March 2017 when I attended a pre-conference workshop at the UBC Centre for Health Services and Policy Research (CHSPR) conference titled “Patient Engagement in Primary Health Care Research”. There, I heard acronyms flying around like confetti – SPOR, POR, PVN, QI – but I did not link those words to my patient and caregiver experiences.

Two months later, I was a panel member on an “Indigenous Engagement and Ethics in Research” at Five Days in May, an Island Health Research event in Victoria and heard more about SPOR and PVN. As soon as I got home, I checked out both websites, signed up with the BC Patient Safety & Quality Council Patient Voices Network (PVN), and read more about SPOR (Strategies for Patient-Oriented Research) but didn’t really understand its intent or how to get involved.

Right away I saw a PVN engagement opportunity that really interested me and coincided with my work-life-interest background: Patient Advisor Led Site Environmental Assessments (#PAL_SEA) with Island Health. I RSVP’d and was accepted to my first quality improvement project!  The project, modelled after one in the U.K. by Brian Bowman, Director, Quality Improvement and Business Support at Island Health, is now an Island Health funded Quality Improvement program.

I was also selected as a founding member of the BC Primary Health Care Research Network (BC-PHCRN) Patient Advisory Panel in May 2017. The BC-PHCRN Manager at the time, Melody Monro, Ruth Lavergne of the SFU Health Sciences, and Louisa Edwards, PREFeR Project Coordinator, empowered me and my peers to define the Terms of Reference (ToR), develop questions for the PREFeR Survey, and to work collaboratively with diverse patient voices with diverse healthcare experiences and interactions. I met some remarkable people whom I’m happy to call friends and collaborators.

Being involved for one year on the BC-PHRCN, where we prioritized patient priorities for Patient-Oriented Research changed my perspective on working with other patient partners and stakeholders: I needed to compromise, I needed to see the bigger, global pictures of healthcare challenges and opportunities, and look for systemic factors keeping innovation and progress “stuck”.

September 2017 I was selected to the BC SUPPORT (SUpport for People and Patient-Oriented Research and Trials) Vancouver Island Regional Centre Oversight Committee: this took my volunteering and patient engagement to a whole other level. Sitting at this table, my patient voice has the same voting power as other committee members. True collaboration and empower – the right of the IAP2 Spectrum (International Association of Public Participation) – developed my understanding of the greater healthcare system. I now contribute to health and healthcare initiatives at the local, provincial and national level.

After my PVN Orientation, the PVN Engagement Opportunities emails were my conduit to getting involved and engaged in healthcare quality improvement (QI). I am grateful for the opportunities to learn, to share, and contribute.

Patient Testimonial IV

Safer prescribing for older patients living with multiple chronic diseases can be very difficult. A Structured Process Informed by Data, Evidence and Research (SPIDER) uses quality improvement-based methods to engage family physicians and their care teams in learning and working together to improve care for patients 65 years and older who are taking ten or more different prescription medications. The objective of this project is to assess whether the SPIDER approach can reduce potentially inappropriate prescriptions for four groups of medications including: 1) proton-pump inhibitor, a group of medications that reduce the production of stomach acid; 2) benzodiazepines, a group of medications that treat sleeping problems and anxiety; 3) Antipsychotics, a group of medications that treat mental disorders; and 4) sulfonylureas, a group of medications that lower blood sugar levels. Patient experience, care provider satisfaction and the costs of such approach will also be assessed. The study includes two phases (feasibility and randomized controlled trial) and will be rolled out in seven practice-based research networks across five provinces in Canada. To date, the feasibility study has been launched in the Toronto site.

One of the key aspects of the SPIDER approach is the support of a quality improvement coach. The coach is a change expert in practice and is also a connector between participating family physicians and their teams and the research team. The culture of all-teach and all-learn and sharing-is-caring nurtured by the coach has contributed the high level of engagement and commitment demonstrated by participating family physicians and their teams in the Toronto site. An exceptional example is the collaboration between a clinical pharmacist of a large family health team and a solo practice family physician in the same community. The family physician has a large older patient panel and does not have staff or resources to spare. With the support of the family health teams’ leadership, the clinical pharmacist was able to provide his services to help the solo physician to conduct medication review and patient counseling, easing the burden of the physician. With the help of the coach, information and resources such as teams project charters and workshop learning materials are willingly shared between the practices and teams in the Toronto site but also with other regions involved in the study. In summary, access to coaching support is an important success factor for improving the care of complex older patients on many medications and looked after in the community.

Patients have been extensively engaged since the commencement of research idea conceptualization and protocol development and throughout the project to ensure that what the project aims to address is closely aligned with what matters them and their families the most. At the national level, the patient advisory committee consisted of five patient partners also sits on the steering committee to meet on a regular basis to monitor the project progress, discuss issues and make decisions collectively. Patients input and advice, in addition, are sought and are incorporated into materials developed for communication and knowledge dissemination.

The study protocol has been submitted to a peer-review journal publication; a patient is one of the co-authors. This acknowledges her contributions to the project. As well, this patient was invited to co-present a SPIDER poster at an international scientific conference in 2018. At the regional level, research networks involved in the project are also encouraged to engage local patient partners. At the launch and summative meetings of the Toronto Learning Collaborative in the feasibility phase, patients from both the national advisory committee and participating practices are invited to share their reflections from patients’ perspective.