The SPOR program or how to get involved in your own treatment!
March 24, 2018
After your diagnosis, you may feel like struck by thunder. I was. Whatever I was hearing was just dancing over my skull without penetrating. But, slowly as the effects of chemotherapy were wearing away, I started thinking again. And then I was dying to get more information about this devil I got that might kill me, but no information was coming forth, apart from, do this, do that, with no explanation. Through the nightmare, having to wait to get test results “only from the ordering physician”, who may be away, busy or unavailable, as if I am unable to read a piece of paper myself, is the cherry on the cake of the life-threatening reality. You are dragged along to dance steps you don’t even know or understand…
The best was the “don’t worry” phrase. How can I not worry, all I got is this one life… Or, reading the pamphlets we all get at the hospital I was also told that “it is normal” to worry… But, I want to live even if it is abnormal to want to live… Who cares what the textbooks think? I would just love to know, should I worry or not???
Thankfully, all this is changing. Not fast enough but it is changing. The SPOR (Strategies for Patient Oriented Research) program is just the preamble of what is coming. Here it is:
A big part of medical research in Canada is funded by the Canadian government, through the CIHR (Canadian Institutes of Health Research). CIHR is divided into several virtual “institutes”, in essence panels that examine grant proposals in different areas of health research, eg Cancer, Cardiology, Pathology etc. One of the Institutes is the “Institute of Health Services and Policy Research” which, according to its website “is dedicated to supporting innovative research, capacity-building and knowledge translation initiatives designed to improve the way health care services are organized, regulated, managed, financed, paid for, used and delivered”.
Sholom Glouberman is a professor of Philosophy. He founded the organisation “Patients Canada” in 2011, which is “a national, independent organization that champions health care changes that matter to patients”. Improving health care in short. He submitted a grant to CIHR based on his experience with Patients Canada and it was funded!
His main arguments were that:
- People are much more educated overall now than 50 years ago, AND now with the internet they learn a lot. Research has shown what I would think is obvious, that if patients are informed and understand, then they are much more likely to follow the instructions, take the medicines accurately put up with side effects, etc etc. For this reason, the outcome is much better, and this saves lots of money to the government. (let alone that you get better…). Rather than having patients struggling to get something from, and be often mis-informed by the internet, now doctors can guide the patient who wants to know, to the best websites.
- As a patient, you can know best what works for you. Eg Matthew Jackson, a hemophiliac, said at one of the meetings on the subject at KGH, that he can sense when he needs to take his factor 8, from a special kind of pain he feels in his joints. Then he does the infusion himself. Same with diabetics, lymphedema people etc. That is, our role changes, we teach the doctor, eg “I found this tiny lump, you can feel it if you place your fingers here and here and squeeze”. Then the doctor learns about the different variations of the normal, and the cancer. We-patients/survivors have a huge wealth of information to offer, to enrich the database in their mind, as well as enrich textbooks eventually. In other words, we are partners in our care ie researchers too, not just “sick people”…
The CIHR grant gave rise to the “Strategy for Patient-Oriented Research (SPOR)” whose purpose is to engage patients as partners. The grant was distributed to the Provinces and patient-advisors were set up. Patient-advisors read research grant proposals and give advice to applicants on how to get information from the patients as they participate not only in clinical trials but in health delivery itself and their treatment overall!!!
Alies Maybee is a Patient advisor with Patients Canada and team leader. CIHR is now conducting a novel demonstration project designed to understand how patients can be engaged in health research. As a network of informed Patient Advisors, they are moving beyond doing research on patients, to being engaged as partners on those research teams. The advisors are identifying areas of research that are priorities for patients and learning how to collaborate with researchers all while bringing their perspectives and insight to the work. This is unprecedented!
Their work is funded by the Ontario SPOR Support Unit (OSSU). I was amazed to hear that there is a Master’s program at the University of Montreal (and elsewhere, but not Queen’s yet) doing research on exactly that, how to involve patients in their care, and how to learn from the patient, the patient’s priorities etc. At the Lymphedema conference in Montreal last October 2017 graduate students presented their findings on how to get lymphedema-patients involved in their own care. How to measure progress, how to detect an infection early before it turns into nasty gangrene etc!!! In this respect, England has a much longer history than Canada and the US. I was amazed to read that a scientific Journal has just been launched, Patient involvement and engagement, the world’s first co-led patient-research Journal!
The overriding issue is that we-patients can become our own advocates too, to put pressure on the powers that be to increase funding to eg reduce wait times for surgery or other treatments, fund new life-saving drugs etc. “Patients” is essentially the public, ie everybody or almost, and they all vote… In this, we will be joining our voices with doctors who are advocating on our behalf since many years now (eg Wait Time Alliance, an organization founded by our own Dr. Chris Simpson of KGH and produced a report in 2008, Ontario Health coalition, CBCF and others). Amazing, heroic people at times. To the very least they fully deserve our informed support! We can do it, and as far as what something “feels” like, we are the experts, nobody else can possibly be. Patient organizations like BCAK can serve as a very useful resource for patient recruitment.
At KGH the SPOR initiative is just starting. If you want to get involved as a Patient Experience Advisor you may contact the coordinator of clinical trials, Tracie Hanna, Manager, Cancer Clinical Research Team, Email: email@example.com. Or, Daryl Bell, program lead, by email or phone at 613-549-6666 extension 4424. Or, Lisa McAvoy, MA, CCRP , Research Administration Facilitator, KGH, W J Henderson Centre for Patient Oriented Research Connell 4, Room 2.4.023, 76 Stuart Street, Kingston, ON K7L 2V7,613-549-6666 ext. 3344
Following is a Document on Patient engagement and Canada’s SPOR initiative, prepared by Dr Julia Abelson, PhD, McMaster University (chepa.org/who-we-are/faculty/details/julia-abelson).
Following is information I gleaned from Patients Canada, CIHR and SPOR websites.
Emily Nicholas Angl, Patient Advisor
Subi Bhandari, Board Member
Formed in 2011, Patients Canada (formerly the Patients’ Association of Canada) is a national, independent organization that champions health care change that matters to patients. As the culture within health care continues to evolve, there is increasing demand for patients to partner in guiding improvement in many areas of health care and across care settings. Patients Canada has pioneered the practice of bringing the authentic patient voice to health care decision-making, ensuring decisions reflect patient priorities.
Our community is comprised of Canadians from all walks of life who share our goal of an improved patient experience. Join our growing community and stay up to date on our work to improve the patient experience, learn about innovative practices and programs that are making a difference, and share your experience and insights on topics that matter to you.
Patients Canada champions a health care system that works for patients.
Patients Canada speaks with the authentic voice of the patient community across Canada, acting on our commitment to shape health care policy and improve the delivery of health care at all levels. We ensure that patients are engaged as equal partners in decision making with government and the health care community to improve the patient experience and to achieve outcomes that matter to patients.
- Continuous and attentive listening to the experience-based voice of patients and family caregivers across Canada.
- Collaborative partnerships with health care stakeholders committed to developing a patient-centred culture, including governments, health care providers and like-minded organizations.
- Education and training of patients and family caregivers to build their knowledge and confidence for greater impact across all levels of health care.
- Involvement in the full cycle of change in all collaborations, beginning with problem identification, to design, implementation and evaluation.
- Pan-Canadian lens that is inclusive and representative of the diversity of patient and caregiver experiences across Canada.
- Impatience on behalf of patients
- Speaking patient truth to those with power
- Passion for broader good
- Tenacious advocacy
- Practical and meaningful solutions
- Standing with patients
- Fearless action
- Innovation with patients
- Relentless pursuit
CIHR: Strategy for Patient-Oriented Research
Canada’s Strategy for Patient-Oriented Research (SPOR) is about ensuring that the right patient receives the right intervention at the right time.
Patient-oriented research refers to a continuum of research that engages patients as partners, focusses on patient-identified priorities and improves patient outcomes. This research, conducted by multidisciplinary teams in partnership with relevant stakeholders, aims to apply the knowledge generated to improve healthcare systems and practices.
The objective of SPOR is to foster evidence-informed health care by bringing innovative diagnostic and therapeutic approaches to the point of care, so as to ensure greater quality, accountability, and accessibility of care.
SPOR is a coalition of federal, provincial and territorial partners – all dedicated to the integration of research into care:
- patients and caregivers
- health practitioners
- policy makers
- provincial/territorial health authorities
- academic institutions
- private sector
SPOR adheres to the following principles:
- Patients need to be involved in all aspects of the research to ensure questions and results are relevant;
- Decision-makers and clinicians need to be involved throughout the entire research process to ensure integration into policy and practice;
- Funding under SPOR is based on a 1:1 matching formula with non-federal government partners to ensure relevance and applicability;
- Effective patient-oriented research requires a multi-disciplinary approach; and
- SPOR is outcome driven and incorporates performance measurement and evaluation as integral components of the initiative.
Engaging Patients in Health Research
Sep 10, 2015 8:00 PM
This is part of our ‘Impact’ series, where we unpack the context and opportunity for our work, and what it means to patients, family caregivers and the healthcare community across Canada.
Patients Canada is part of a national coalition funded by the Canadian Institutes of Health Research (CIHR) that is putting patients and family caregivers at the centre of health research, and we’re eager to share our progress.
We sat down with Alies Maybee, SPOR Team Lead and Patient Advisor with Patients Canada, to talk about the new landscape of patient partners in research, and how this is contributing to the big picture of an improved healthcare system.
Can you tell us about SPOR and what it means for patients and family caregivers across Canada?
Alies: SPOR is an important project for Canadians. Every province and territory has received funding through the Canadian Institutes of Health Research (CIHR) to advance patient-oriented research. Until recently there have not been many opportunities for patients and caregivers to contribute except as subjects of research studies. With SPOR, that’s changed.
Interestingly, the role of a Patient Advisor is relatively new, and it’s particularly new to health research. There exists a limited amount – and that’s generous – of research on the value of involving patients in research, so we’re proud to be in the forefront of doing this.
Patient Advisors have come to be known within a hospital setting, where they collaborate on working groups to co-design processes and procedures to guide patient-driven improvement. Now the research world is seeking to partner with patients in part because it’s required in order to gain research funding. As I see it, this is partly what’s driving this emergent world of patient-centred research. And rightly so! Health research in Canada is largely funded by the public – it’s designed to improve our health – and, as such, we have a strong role to play in setting research priorities.
In the context of this work, Patient Advisors co-develop and validate the research questions, co-design the methodologies used and provide guidance to the recruitment of patients in studies. We also participate in the knowledge translation of the research findings and the dissemination of those findings through our networks. This last task is significant, as succeeding here will hopefully spur the participation of new Patient Advisors in future research programs as well as raise public awareness of the work’s success.
Realistically, everyone must be willing to learn to make this partnership work. Patient Advisors will need to expand their knowledge of research, and researchers must build their understanding of meaningful partnership with patients.
Why should this work matter to patients?
Alies: SPOR demonstrates a commitment to progress, as does the growing movement of Patient Advisors. I believe this work echoes the sentiment of Canadians who share their health experiences with us, those who want to see real, concrete improvements to the health system. We’re entrusted with their stories and this is what we bring to the table.
We need to hear and understand the health experiences of people living across Canada – the good and the bad. Those shared experiences are integral to our ability to make the right kind of impact. People who have lost someone or who have endured a negative (or positive) health experience want it to mean something, which is why our tagline “make your experience count” resonates with people.
How can someone interested in this work get involved?
Alies: I encourage people to share their experiences within healthcare. It’s daunting for some, so we’re here to help. Patients Canada is a network of independent, informed and engaged Patient Advisors, and we aim to expand this network across Canada to support others engaged in similar work. We’re stronger together.
Visit our SPOR project page to learn more about this work. If you’re interested in getting involved, or if you have questions or comments, please contact us.