1) What’s SPOR?
SPOR stands for Strategy for Patient-Oriented Research, a national initiative led by the Canadian Institutes of Health Research (CIHR). The strategy was developed to foster evidence-informed health care by bringing innovative diagnostic and therapeutic approaches to the point of care. SPOR is committed to involving patients in all aspects of health care research to ensure research questions and results reflect what’s important to patients.
2) What’s patient-oriented research?
Traditionally, patients have mostly been the subjects of health research, or “study participants.” Patient-oriented research is done differently, as it:
- is done in partnership with patients (as part of the research team!);
- answers research questions that matter to patients; and
- measures outcomes that matter most to patients (like quality of life).
3) What is the BC SUPPORT Unit?
The BC SUPPORT Unit is a multi-partner organization created to support, streamline and increase patient-oriented research throughout British Columbia. The BC Unit is one of 10 SUPPORT Units established across the country as part of Canada’s Strategy for Patient-Oriented Research (SPOR) led by the Canadian Institutes of Health Research (CIHR). For more information, please see the About Us page on the BC SUPPORT Unit’s website.
4) Why is it important to involve patients in research (beyond the more traditional role of research subjects)?
Patient-oriented research aims to improve health outcomes (preventing death after a heart attack, or reducing injuries from falls in residential care homes, for example) and to enhance patients’ experiences by using evidence to inform decisions at all levels in the health system.
Patient-oriented research offers an important opportunity to make health research more responsive to the priorities of the patient and the health care system. For example, if patients are involved in a study evaluating the effectiveness of a particular treatment or health service, the evaluation questions would likely explore outcomes or elements that are important to the patients in reaching their health goals. In some cases, these questions may not have been identified as important by the clinicians or researchers.
Patients are experts on their own conditions and have unique perspectives. Involving patients in priority-setting and decision-making related to research allows researchers and clinicians to develop a more comprehensive understanding of the patient experience of care and to collaboratively identify and explore gaps in evidence.
5) How is PVN supporting patient-oriented research?
The BC SUPPORT Unit and PVN have been working closely for more than a year to increase the involvement of patient partners in patient-oriented research. Each organization has been using its unique expertise to support both patient and research partners. Both organizations are committed to improving health care systems and practices, and patient-oriented research is one method that will help to achieve this goal.
The BC SUPPORT Unit assists researchers who are looking for patient partners, and one resource to connect researchers with patient partners is the Patient Voices Network.
6) What type of research-related opportunities have been support by PVN so far?
As of the end of summer 2017, PVN has supported patient partners to participate in over 20 engagement opportunities. Some recent examples have been:
- Supporting recruitment for The BC SUPPORT Unit’s expanded Patient Council,
- Two patient partners are supporting the BC Emergency Medicine Network as part of a team investigating how to prevent adverse drug events
- Patient partners with chronic pain have participated in a workshop to learn about the foundations of patient-orientated research
- Patient partners for the Permission to Contact Demonstration Project are helping improve the way patients connect to research opportunities
- A patient partner train-the-trainer event in Ottawa and has been co-facilitating training about patient-oriented research throughout BC.
- And the list goes on!
7) Do I need to know about research before I become part of a research team?
No. You can expect to receive the training and orientation you need, both before and throughout the research process. The BC SUPPORT Unit offers training for patient-oriented research teams, and encourages researchers, or their assistants, to act as mentors to patient partners throughout the life of their research project. The research team will look to you for the expertise that comes from your lived experience.
You are welcome to get in touch with the BC SUPPORT Unit for more information about the training they offer.
8) How can I learn more about becoming a patient partner in health research?
To learn more about becoming a patient partner in health research, you can start by watching the webinar Who, me? Yes, you! Becoming a Patient Partner in Health Research, offered by the BC SUPPORT Unit. The webinar will show you what patient partnership means through the eyes of patients who are already involved in projects.
If you’re interested in more information about health research in your area, you can contact your local BC SUPPORT Unit regional centre. Regional centres are partnerships between a regional health authority and the university in that region.
9) How do I get involved with patient-oriented research?
Patients can be partners in research – we call this role “patient partner.” Patient partners have many different roles throughout the life of a research project – from beginning to end. For example, they can:
- Help identify and decide the important questions to ask
- Inform the study design (e.g. Advisory Group Member on a research project at Providence Health identifying the learning needs and challenges of nurses delivering care to patients with both mental health and substance use disorders in acute psychiatric settings, and then developing and delivering an education session aimed at supporting nurses with the knowledge, skills and competence to deliver evidence-based care)
- Be involved in gathering and analyzing data
- Co-author reports
- Present research findings at conferences and workshops
10) Where are the opportunities to become a patient partner in health research posted?
Research-related opportunities will be posted to our website and included in our newsletter every Tuesday. These opportunities will include this symbol, so that they’re easy to identify:
One of the reasons that we wanted to make research opportunities easy to identify is that rather than have a PVN Engagement Leader act as the liaison between the patient and the research partners, these opportunities will be supported through staff from the BC SUPPORT Unit. This support will include things like assisting the research partner to plan and prepare for the engagement opportunity, communicating meeting details, and supporting patient partner orientation to the research project. PVN staff will be available to provide support on an as-needed basis.
11) How will I know who to contact if I have questions about an opportunity?
All opportunities will continue to include a contact for more information. The only difference is that for opportunities with the research symbol, the contact person won’t be from PVN. Instead, you’ll be connected with one of the friendly folks from the BC SUPPORT Unit.
12) I’m involved in a quality improvement initiative already. How is this initiative different from a research project?
There are many similarities; for example, in both research projects and quality improvement initiatives, the patient is primarily contributing their personal experience of the health care system. Of course, patients often bring other valuable knowledge and skills from their careers, education and life experience in general.
One of the primary differences is that research projects typically take longer than quality improvement projects – months, or even years. They may also require more training so that patient partners feel comfortable in their roles.
13) I’m a research partner and I’m interested in inviting patients to partner in my research project – where do I start?
Research partners should initiate the process by completing the general service inquiry form on the BC SUPPORT Unit’s website.
14) I still have questions, who should I contact?
If you have questions about patient-oriented research, please visit the BC SUPPORT Unit website and complete a short on-line inquiry form. Your inquiry will be directed to the right person who will follow up with you within three days.
If you want to learn more about how to get started as a patient partner and participate in engagement opportunities, please send an email to firstname.lastname@example.org, call 604.668.8240 / 1.877.282.1919 or contact the Engagement Leader in your region directly.