Who is a Patient?

The following is a helpful explanation of patient-oriented research from the Patient Advisors Network

Patients and caregivers are actively partnering in health research globally -- and Canada is no exception.

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It is still important that we continue to be subjects of research.

As partners, patients and caregivers are helping to set research priorities, to evaluate research, and to partner on research teams. Researchers are starting to value the perspective of patients and caregivers as an essential piece of the research puzzle.


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.

 
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How are patients and family members involved in SCPOR’s work?

This graphic shows a few of the ways patients and family members are actively involved with SCPOR. Patients are instrumental in co-designing, co-organizing, spear-heading, and co-hosting a number of our initiatives.

Without their valuable contribution, this important work could not be done.

 
 

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.

 

Want to learn more?

We suggest you check out our Information for Patients & Communities section below!


Learn more about Patient-Oriented Research…

From the perspective of an engaged patient!

 
 

Watch more on the SCPOR YouTube channel!


Ready to get involved?

Communities as Patient Partners

Building Research Relationships with Indigenous Communities

A training module offered by IPHRC and SCPOR

The Indigenous Peoples’ Health Research Centre (IPHRC) and the Saskatchewan Centre for Patient-Oriented Research (SCPOR) are pleased to offer training modules for researchers and their teams seeking to engage Indigenous communities in research. Entitled Building Research Relationships with Indigenous Communities (BRRIC), these modules offer a diverse array of essential information covering issues such as:

  • History of Indigenous health and research in Saskatchewan;

  • Existing policies and frameworks guiding research with Indigenous communities such as OCAP™, Truth and Reconciliation Commission Calls to Action, Tri-Council Policy Statement Chapter 9 and; 

  • Protocol on how to respectfully and meaningfully engage communities in research projects. 

The module is beneficial for faculty, researchers, patient and family advisors, health care providers, SCPOR supported research teams, students, research and health organizations, and any other individual or organization seeking to engage Indigenous communities in research. The aim of the module is to provide participants with practical skills for engaging in transformative research with Indigenous peoples that utilizes best practices to ensure research is effective and produces outcomes that benefit Indigenous communities.

Indigenous people deserve to work with researchers who are properly equipped and ready to create reciprocal research relationships that provide real benefits back to our communities while acknowledging our rights to be self-determining. This training module is just one in a series of modules that we hope to create and deliver over the next two years for researchers, communities and patients.
— Cassandra Opikokew Wajuntah, director of the IPHRC

 
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Frequently Asked Questions

IREE Platform Specialist Kirstin Scansen-Isbister answers your questions about BRRIC training here.

 
 

The following is an Excerpt from Erica Schindel’s article

“IPHRC and SCPOR launch first-of-its-kind training for health researchers engaging with Indigenous communities”

BRRIC also incorporates traditional Indigenous knowledge and the Truth and Reconciliation Commission’s Calls to Action. It is designed to provide researchers with the necessary policies, frameworks, and Indigenous ethical standards needed to respectfully engage with Indigenous communities and patients.

While some researchers have been successful in building long-term relationships with Indigenous communities, many are often unsure about where to start and what they need to know due to geographic barriers, misinformation and a lack of training in respectful Indigenous engagement.

Here we have the opportunity to provide the research community and those organizations that plan to work closely with Indigenous communities, with skills, knowledge and practical training that will enhance their work. Historical context matters, and responsible research takes this into account.
— Jackie Mann, SCPOR Executive Director

To address this, BRRIC will highlight the historical role of colonialism as a determinant of Indigenous health—such as the Sixties Scoop and residential schools—as well as provide current considerations when conducting research with Indigenous peoples—like the chronic underfunding of Indigenous health and education. This background enables researchers to understand and uphold the self-determination of Indigenous nations while being cognisant of the diversity within these communities.

Read the rest of Erica Schindel’s article about the BRRIC Training Modules here!

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Upcoming BRRIC Training Modules

For more information and other events, visit our events page or our calendar.

Information for Patients & Communities

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 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.

Get Involved

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: mflowers@hqc.sk.ca.


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 Events page.


Are you a patient looking to apply for honoraria?

If so, read on…

Honoraria process

As a Patient & Family Advisor, you quality for honoraria in recognition of your time.

In order to be able to claim honoraria, there is a two-step process: (1) create a profile in our volunteer database and then (2) sign into your newly created account and log the hours. After an event/meeting, you will log your hours. Once this happens, the SCPOR BetterImpact administrator will generate the required reports and submit the information to accounting - you can expect a cheque to arrive in the mail within 2-4 weeks once the hours have been logged.

 

You can set up your own Better Impact account using the link below

Use it to log your hours, so you can claim your honoraria!

 

If you get stuck…

Here is a link to a video that will walk you through creating a new account, and also explains the honoraria process

 

Want help logging your hours on Better Impact?

Check out the tutorial below!

 
 
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Any questions?

If you run into any issues, our Better Impact administrator, Wendy Sharpe, is a quick phone call or email away to provide you support or answer any questions – please don’t hesitate to get in touch with her at 306-668-8810 ext 102 or via email wsharpe@hqc.sk.ca.