Patient Oriented Research

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From patient to partner

There is a new approach on the rise within health research, whereby patients are taking more of a leadership role in the research process - from idea to data collection to analysis. The PIUO Study is being conducted with Canadian Institutes of Health Research (CIHR) funding for an initiative called “Strategies for Patient Oriented Research” (SPOR). The mandate of SPOR is to encourage and enhance research that includes active partnerships between patients, researchers, health professionals and decision makers. SPOR's slogan “Putting patients first” implies that the priorities of patients should be used to set the research agenda. Research is being conducted with patients, rather than for them. 

Historically patients have been the subjects of research. Researchers in health have wanted to help find solutions to problems, for instance a cure for a disease, and have tested their hypothesis and innovations on patients with their informed consent. While the intention has mostly been to help patients and ensure the health and wellbeing for our communities, health research has often been done with patients as the subject of research, not partners in the research process. This is now changing and researchers are finding that the best way to ensure healthy communities is to partner with patients to make sure that we are doing research that matters to them and that, more importantly we do it in ways that patients find appropriate and meaningful.

Contributing to research can be a healing experience for families who have gone through a difficult health journey. Knowledge translation from the family/patient perspective is enhancing the evolution of research and making it more accessible for both the researcher and the families. It is a win/win situation for all involved
— Gillian Treschow, Parent Advisory Group member

Research is better when patients are partners

Partnering with patients and their families is not just a means of making the research process more democratic and transparent. It focuses on questions that matter to patients with the goals of improving patient experiences, health outcomes and the health system as a whole. Patients can influence the design of the study, the outcome measures used and the interpretation of findings, leading to better results with higher impact.

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Some of the concrete ways patient partners can improve research are:

  • Ensure research questions are relevant to patients.
  • Ensure the outcomes of greatest importance to patients are the ones measured.
  • Help design the intervention in a way that is feasible and acceptable to patients and to health care providers, and therefore easier to apply in the real world
  • Help develop consent forms, questionnaires and other materials in a way that makes them easier to understand and makes sense to other patients.
  • Help recruit participants by developing recruitment material and disseminating information about opportunities to participate in research among peer groups.
  • Participate in data collection, e.g. conducting interviews, which may enhance the quality of the data.
  • Assist with the interpretation of the findings to ensure that the results are meaningfully related to their lived experiences.

How does the PIUO Study partner with patients?

In the PIUO Study, our patient partners are parents of children with unexplained pain and irritability, living with severe neurological impairment. We recognize that patients are experts on their health experiences and needs; provide unique expertise on their everyday experiences living with specific health conditions, and can share their experiences with the health care system. In doing research with non-verbal children who can’t tell us where their pain is, we acknowledge parents’ intimate understanding of their child’s situation is the knowledge we need to develop appropriate research questions and goals and engage with our participants in a meaningful manner.

The PIUO Study is part of a broader agenda to enable research that values patients as partners and in our case their families as well. This includes expanding research in implementation sciences, comparing efficiency, benefits and harms of various health services and supporting clinical trials that focus on the welfare of people living with chronic diseases. 

Our Parent Advisory Group

From the planning stages of the PIUO study to collecting feedback from participating families on their experience taking part in our research, our Family Advisory Group is involved with our research. The Parent Advisory Group has reviewed and provided consultation on the study protocol and data collection tools such as questionnaires for families. The Parent Advisory Group has also been involved with getting the PIUO study on its feet, helping design a recruitment strategy and helping promote the study among networks of families with neurologically impaired children experiencing pain and irritability.

Our Parent Advisory Group is composed of people who understand the issues that the PIUO Study shines a light on as well as have connections within the communities of families we hope to connect with to conduct our study.

Parent Advisory Group Members:

Alysone Martel

Gillian Treschow

Ani Khoudian