Patient Oriented Research

From patient to partner

A growing movement within health research is where persons with lived or living experience are taking more partnership and leadership roles within research processes. 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. 

Research is better when patients are partners

Partnering with patients and their families is not just a way to make the research process more democratic and transparent. It is a way to focus our research questions to what matters most to patients, with the goals of improving patient experiences, health outcomes, and the health system as a whole.

Some ways patient partners can improve research are:

• Ensure research questions are relevant to patients.

• Ensure the outcomes most important to patients are the ones being measured.

• Help design the study in a way that is possible for patients to navigate in the real world.

• Help develop study materials in a way that makes sense to other patients.

• Help recruit participants by sharing research opportunities among peer groups.

• Participate in data collection, such as conducting interviews, which may enhance the quality of the data.

• Assist with the interpretation of study findings to ensure that the results are meaningfully related to the patient experience.

Listening to families

In the PIUO Study, our patient partners are parents of children with unexplained pain and irritability, living with severe neurological impairment. We recognize that parents are experts on their child’s health experiences and needs, provide unique expertise on their everyday life with health complexity, 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 life experience is the knowledge we need to develop appropriate research questions, goals, and to engage with our patient participants in a meaningful manner.

Family partners in our research

PIUO Phase I Study: The Parent Advisory Group was involved with getting the Phase I 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. Being parents of children with SNI, this 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 looked to connect with to conduct our study.

PIUO Phase II Study: The Parent Monitoring Board was formed by parents who were previous participants in the Phase I clinical trial, and can directly speak to the experience of navigating the developed Pain Pathway. This group of parents have been involved since the beginning of the project, offering feedback and direction on the development of the study protocol and design, giving attention to the experience of their children and families navigating care in their communities. They are also supporting the creation of the Training Modules community pediatricians, to bring the Pain Pathway to community clinics.

Our Family Liaison

As a research group that embraces and values patient input, a Family Liaison is embedded within our research team to help engage families in the research process.  Families are experts, and we want to collaborate with them throughout the entire research process. With families’ contributions we can make our research more relevant, meaningful, and change inducing.  We are listening and we welcome your input.