Patient Oriented Research

The SPOR program,

or how to get involved in your own treatment!

March 19, 2018

After your diagnosis, you may feel like struck by a 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:

      1: 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.

      2:   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 that I went to at KGH, that he can sense when he needs to take his factor 8, from a special kind of pain he feels in the 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!!! 

The overriding issue is that we-patients 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-patients 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, Ontario Health coalition 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.

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: hannat1@kgh.kari.net.  Or, Daryl Bell, program lead, by email or phone at 613-549-6666 extension 4424.

from the video http://www.cbc.ca/news/thenational/breast-cancer-survivors-train-doctors-for-better-treatment-1.4513649

♣     ♣     ♣

Following is information I gleaned from Patients Canada, CIHR and SPOR websites.

CIHR:

http://www.cihr-irsc.gc.ca/e/41204.html

Patients Canada

http://www.patientscanada.ca/index.cfm?id=51204

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.

Join us!

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. 

Our Mission

Patients Canada champions a health care system that works for patients.

Our Vision

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.

Our Approach

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-centered 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.

Our Values

Impatience on behalf of patients Standing with patients
Speaking patient truth to those with power Fearless action
Passion for broader good Innovation with patients
Tenacious advocacy Relentless pursuit
Practical and meaningful solutions Disruption
Transparency  

http://www.cihr-irsc.gc.ca/e/41204.html

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
  • researchers
  • health practitioners
  • policy makers
  • provincial/territorial health authorities
  • academic institutions
  • charities
  • 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 healthcare:

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