Patient and family involvement in health research
Patient-oriented research engages patients (or those with lived health experience including caregivers) as partners in the research process and focuses on patient-identified priorities towards improving patient outcomes. It is conducted by multidisciplinary teams, made up of clinicians, patients and their families and/or caregivers, policy makers and researchers and aims to apply the knowledge generated to improve health care systems and practices.
SCPOR supports research that follows this model. Patients and families will still be research participants; however, additional roles and opportunities for patients and families will be created on research teams.
What is the role of the patient on a research team?
Patients and family members can serve a variety of roles on the research team, based on their abilities and interests and the research team needs. Some examples include choosing research priorities, advising on different research approaches, and helping with data interpretation and analysis. Patients can help researchers write surveys that are more understandable or relevant for the research participants or help with focus groups and interviews; their input is often invaluable in interpreting data. In addition, SCPOR has a number of advisory committees which include patient and family advisors. See this diagram for some of the many ways patients and family members can get involved.
What does the term "patient" mean in the context of patient-oriented research?
“Patient” is an overarching term which includes individuals with personal experience of a health issue as well as informal caregivers, including family and friends. It may also include community/public representatives, individuals from patient organisations, and others who have experience with illness.
There are many other terms that can be used interchangeably with the word patient. We encourage you to use the term that you feel most comfortable with. This may include patient, client, resident, person, family member, community member, etc.
What is the time commitment?
Patients may be involved in a research study from start to finish, or may choose to participate at particular times and for particular activities. As well, the time commitment is unique to each project. How the patient participates, and how long their commitment will be, is negotiated with the research team and is dependent on the patient’s abilities and interests. Rural and remote patient and family advisors may prefer to participate largely by teleconference or video conference; flexible and creative solutions to travel and time issues may be necessary.
I’m interested and would like to learn more
PFA ORIENTATION INFORMATION
Patient Family Advisor (PFA) Orientation sessions are offered at various times during the year (usually once every quarter). This voluntary training runs for 90 minutes and can be attended from your own home via an online session. The training covers topics that are specific to the Patient Family Advisor role, such as: understanding what a Patient Family Advisor does, what to expect, how to prepare for meetings, and how to be a successful Patient Family Advisor. You can also attend the PFA Orientation training in person if you are in Saskatoon and would like to come into the Health Quality Council office. If you don’t have access to a computer, training can be also be attended over the phone.
If you would like to register for the next session, please contact Michelle Flowers at: firstname.lastname@example.org .
SPOR MODULE TRAINING
SCPOR also offer a one-day training session. These training modules are focused on patient-oriented research. The sessions cover topics such as: the language and terminology of patient-oriented research, the patient engagement movement, how it works and roles for patients in patient–oriented research. SPOR module training is for everyone on the research team – Patient Family Advisors, Researchers, Health Care Providers and Health Care Decision Makers. To register for the one day session, go to the News and Events page.
Some examples of patient involvement
Drugs not always the priority for patients
One study looked at osteoarthritis of the knee, and what was being published in research journals. The researchers then surveyed patients and clinicians about what they would like to see studied. While more than 80% of randomized clinical trials on osteoarthritis of the knee were drug evaluations, only 9% of patients and clinicians saw more research on drugs as a priority; the overwhelming majority were much more interested in evidence on the value of physiotherapy and surgery. Asking patients what their pressing health information needs are can change the focus of research. Tallon D, Chard J, Dieppe P. Relation between agendas of the research community and the research consumer. Lancet 2000; 355: 2037–40
Patient priority: Stop the itching!
A Canadian study sought to discover and rank the most important unanswered questions about the management of kidney failure in adults from the point of view of adult patients with kidney disease, caregivers, and clinicians. The researchers started with nation-wide surveys, then conducted workshops to narrow down research topics. Patients identified that itching was a major problem, an issue that has received practically no research attention. In fact, four of the top 10 priorities patients came up with were hardly being studied at all. Patients were more likely to identify research that looked at difficult to manage symptoms such as cramping, restless leg syndrome, and poor energy, in addition to the itching issue. Another important area identified by this group was improving health care practitioner/patient communications. Patients were also interested in ways to prevent and manage earlier forms of chronic kidney disease, and thus avoid the need for dialysis. The priority-setting process that was done has given researchers a set of research topics that can be addressed and will improve quality of life for patients with chronic kidney disease. Manns, et al. Setting Research Priorities for Patients on or Nearing Dialysis. Clin J Am Soc Nephrol. Oct 7 2014, 9(10): 1813-1821