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.

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  

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

At SCPOR, the Patient Engagement & Empowerment Platform organizes the registering, support and training of people interested in becoming a Patient/Family advisor.  To see a description of the training modules and upcoming dates for training in Regina and Saskatoon, click hereTo register, contact Sarah Bocking at SBocking@hqc.sk.ca, or call 306-668-8810, ext 151.

If you’re interested in another date or location for a Module Training Session, please contact Sarah. She may be able to arrange one if there is enough interest. 

 

Registering as a Patient and Family Advisor with SCPOR

Patients and families will be asked to complete a registration form. The form includes basic contact information, self-declaration form and the collection of information necessary to process honoraria/expense reimbursement. The registration form will be stored by the Patient Engagement & Empowerment Platform.

What happens after I register?

Patient and family advisors will participate in the Provincial Patient & Family Advisor Orientation webinar at their earliest opportunity. This is a 2.5 hour orientation session offered to all individuals serving as advisors in research and quality improvement in Saskatchewan.

Patient and family advisors will then participate in two training sessions about health research offered by the SCPOR Patient Engagement & Empowerment Platform. These sessions will help you become more familiar with the research process.

Each patient/family advisor will have a PFA development file with the SCPOR Patient Engagement & Empowerment Platform. This will track their orientation progress as well as serve as a two way tool for communication of additional learning needs. The Patient Engagement & Empowerment Platform can be contacted if a need is identified for additional resources, courses, etc. on a particular topic.

Mentorship & Team Building

Patient & family advisors may choose to join the Patient & Family Advisor Network via Facebook. They may also opt to participate in quarterly Patient & Family Advisor Network webinars. This network is an opportunity to connect and learn from advisors working in various roles throughout the province.

The Patient Engagement & Empowerment Platform can be contacted for mentorship or support with team building by any SCPOR research team.