Information for Researchers
The Saskatchewan Centre for Patient-Oriented Research (SCPOR) is mandated to support patient-oriented research. SCPOR is not a funding agency and does not provide financial support for research. Instead, SCPOR provides resources such as methodological expertise, data access and services, coaching and help with accessing and working with patient advisors (see below). We can also provide advice and connections for Indigenous research.
Requesting Support from SCPOR
The main focus of SCPOR is to support SCPOR research programs. As well, SCPOR will provide support to the CIHR SPOR Networks. SCPOR will also provide support to Saskatchewan Health Research Foundation (SHRF) Sprout Grant research teams – click here for the SCPOR SHRF Support Guidelines.
If you are engaged in patient-oriented research, you can make a formal request for support from SCPOR.
What does Patient-Oriented Research (POR) look like?
The meaningful engagement of patients and family members (PFAs) in health research takes many forms. In the example below, patient and family advisors were engaged throughout the process.
Example: Joining scientific methods with community wisdom: A randomized control trial
|Investigators partnered with a Marshallese community in Arkansas in order to co-create a research agenda that would address the Marshallese health concerns. The top health concern for this group, discovered through surveys and interviews, is type 2 diabetes. The investigators then engaged patients, family members, and local health care providers to decide on whether diabetes prevention or management should be the priority research topic. The research question became: As a Marshallese family with type 2 diabetes, what can we do to manage our family’s diabetes and improve health outcomes?
By partnering with local health care providers, the investigators were able to learn what interventions had been tried in the past, and with input from the community they were better able to understand the limitations of these interventions. Previous interventions focused on “self” management, which was not conducive to the Marshallese collective culture. Even their meals are shared from one pot, and refusing food is seen as rude. The intervention was therefore re-invented as a family intervention.
The investigators wanted to have random assignment to intervention or control group to increase scientific rigour, but the community and health care stakeholders were in favour of letting the families choose the intervention they wanted. It took much discussion and education about research, but the group finally agreed on random assignment. Outcome measures were also a subject of lengthy discussion, with the researchers and health care providers recommending hemoglobin A1c as the primary measure of statistical analysis. The group agreed that other outcome measures validated on minority populations should be used as well. While the Marshallese community advisors chose not to be involved in the quantitative analysis, they did participate in the qualitative analysis and also helped adapt survey/interview instruments for language and culture.
Consensus decision-making was used through the research design process. Stakeholders were encouraged to share their perspectives with the goal of balancing community and cultural aspects with research design and financial constraints. Although some issues required more discussion than others, the group was able to achieve a balance between community concerns and sensitivity, and robust research process.
McElfish P A, Goulden P A, Bursac Z, Hudson J, Purvis R S, Kim Yeary K H, Aitaoto N and Kohler P O. Engagement practices that join scientific methods with community wisdom: designing a patient-centered, randomized control trial with a Pacific Islander community. Nursing Inquiry, 2016 Jun 20. doi: 10.1111/nin.12141. [Epub ahead of print]
The list of possible ways patients, families and communities can contribute is considerable – see this diagram – and will vary according to the research method. Interested patients do not need to sign up for every aspect of a research study. They may in fact only be interested in certain activities, such as contributing to the discussions on research topic or recruitment, or on knowledge translation. Others may wish to be involved in the whole process from start to finish. Click here for CIHR’s Patient Engagement Framework.
How many patient/family advisors are needed on a research team?
Each research project should seek to have two patient/family advisors engaged as advisors in their project team. In addition the research team may consult or engage with other patient populations or groups. For example, you may connect with patient/family advisor councils, patient advocacy groups, health charities, etc.
How are patient/family advisors recruited for research teams?
It is ideal to recruit a patient/family advisor who has some experience, either as someone who lives/has lived with the condition under investigation or who cares for a loved one with the condition. The research team may ask clinicians to share the opportunity with patients and families in their care. Although clinicians cannot share the names of their patients without consent, they can talk to the patient directly and ask them to contact the researcher directly. As well, the research team can create brochures or handouts for the clinicians to give to patients, or leave in their waiting rooms. The SCPOR patient engagement platform can also help by putting out a call to our network of patient/family advisors.
What happens after we recruit a patient/family advisor?
SCPOR can help with Patient & Family Advisor orientation through training. We offer a general orientation for Patient & Family Advisors. This is a 30 minute, internet based module you can do in your own home. If you are interested, contact Wendy Sharpe (email@example.com, or call 306-668-8810, ext 102.)
We also offer more specific training about patient-oriented research. To see a description of the training modules and upcoming dates for training in Regina and Saskatoon, click here. The patient/family advisor can register for these courses online by scrolling to the calendar and clicking on the module he or she is interested in. It is a good idea for others on the research team to attend these modules at least once as well, preferably with the advisor.
Also discuss the opportunity with the advisor and determine how they would like to be involved, e.g., what time of day can they meet? How involved would they like to be and in what capacity? You may want to have the PFA complete a confidentiality form or criminal record check if they are going to be reviewing data or working with vulnerable populations.
Are Patient & Family Advisors compensated for their participation?
It is appropriate to provide honoraria and expenses for patient and family advisors. For more information please contact Malori Keller at firstname.lastname@example.org.
Other ways SCPOR supports POR
SCPOR provides other supports such as expert advice in methods, access to data, integrated knowledge translation, and Indigenous research methods. Services provided by SCPOR are organized under platforms. Below you will find information on support offered through the Methods Platform, the Data Platform, the Knowledge Translation Platform and the Indigenous Research and Engagement Expertise Platform.
The methods platform provides the following services:
- Access to resources and methodological expertise in patient-oriented research
- Coordination of researchers and trainees with SCPOR programs and projects
- Development of expertise and capacity in various health-related methodologies
- Assessment of the provincial needs for methodological expertise to address the requirements for SCPOR programs and projects
- Facilitation and approval of SCPOR trainee funding
SCPOR currently has 17 methodologists across Saskatchewan that provide their expertise in patient-oriented research. Methodologists also provide mentorship and guidance for patient and family advisors, policy/decision makers, clinical professionals, trainees, and other researchers. Please see the below list of SCPOR’s dedicated methodologists:
|Dr. Eman Almehdawe||Simulation/Optimization||University of Regina|
|Dr. Catherine Boden||Literature Searching||University of Saskatchewan|
|Dr. Colleen Dell||Substance Abuse||University of Saskatchewan|
|Dr. Marjorie Delbaere||Communications/Marketing||University of Saskatchewan|
|Dr. Gary Groot||Implementation Science/Realist Methodologies||University of Saskatchewan|
|Dr. Harminder Guliani||Economic Evaluation/Analysis||University of Regina|
|Dr. Shanthi Johnson||Community Context||University of Regina|
|Dr. Tarun Katapally||Indigenous Health/Community Context||University of Regina|
|Dr. Karen Lawson||Program Evaluation||University of Saskatchewan|
|Dr. Juxin Liu||Math and Statistics||University of Saskatchewan|
|Dr. Nathaniel Osgood||Computer Science/Health Systems Modelling||University of Saskatchewan|
|Dr. Thomas Rotter||Realist Methodologies/Systematic Reviews||University of Saskatchewan|
|Dr. Hamed Samarghandi||Operations Research/Modelling||University of Saskatchewan|
|Dr. Nazmi Sari||Economics/Cost-Benefit Analysis||University of Saskatchewan|
|Dr. JoLee Sasakamoose||Indigenous Research||University of Regina|
|Dr. Sonia Vanderby||Operations Research/Modelling||University of Saskatchewan|
If you would like more information about how SCPOR and SCPOR methodologists can help with your patient-oriented research project or if you would like to get involved as a SCPOR methodologist, please contact the Methods Platform Lead at email@example.com.
The Data Services Platform serves an essential function in facilitating access to high quality data and information. This platform ensures privacy and governance, provides data analyst support, and assists with registry development.
The Platform can also assist with building infrastructure to enable electronic data capture, and develops and delivers training for patient-oriented research teams. For more information, contact Tracey Sherin at TSherin@HQC.sk.ca, or 306-668-8810, ext. 167
Knowledge Translation Platform
Knowledge translation is critically important to health research. Discoveries in health care do not automatically lead to widespread implementation in health care or to impacts on health. The reasons for this are various – a solution that works in one area or in one population may not work in another, for instance. An idea may meet with resistance from health care providers or from patients, again, for various reasons.
In patient-oriented research, there is a unique opportunity to integrate planning for and disseminating knowledge early in a research project. The central premise of integrated Knowledge Translation (iKT) is that involving knowledge users as equal partners alongside researchers will lead to research that is more relevant and useful to the knowledge users. For example, one Spanish study looked at developing clinical practice guidelines for inherited retinal dystrophies (see original article here). This disease is both rare and lacks an effective treatment. The researchers, together with the Ministry of Health, took a patient-centred rather than disease-centred approach, resulting in practice guidelines that reduced the gap between routine clinical management and the real-life needs of patients. Because the guidelines were developed with clinicians, patients, and policy makers working together, the guidelines could be adopted much more quickly. Knowledge translation was integrated into the process.
SCPOR provides expertise in iKT strategies by helping to develop customized guidelines, communication materials and protocols to disseminate best practices and key findings.
Indigenous Research and Engagement Expertise Platform
With the guidance of the Indigenous People’s Health Research Centre (IPHRC) and the Indigenous Health Advisory Panel, the Indigenous Research and Engagement Platform will be responsible for four overarching activities/services:
- Engage as full participants in SCPOR Activities: Members of Indigenous communities will be enabled and supported to participate in SCPOR governance and the complete range of research and research- related activities.
- Support and lead transformative research: SCPOR Programs and activities will apply Indigenous knowledge and practices. Findings will be translated to First Nation and Métis health organizations along with the public at large. Ultimately, findings will translate into practices and policies that had been led and sustained by Indigenous communities, helping to close the equity gap in health services and patient outcomes.
- Reflect Values of Indigenous Communities: Valuing Indigenous ways of knowing, doing and being that inform and guide SCPOR relationships and methods.
- Guide and mentor a growing cadre of Indigenous learners: Continue to expand and build capacity for Indigenous learners in all aspects of patient-oriented research.
Contact Kirstin Scansen-Isbister at firstname.lastname@example.org for more information.
N2 access for all SCPOR partners
N2 (Network of Networks) is a non-profit organization that provides resources to Canadian researchers. Resources include online training in a variety of research topics and research support tools, such as standard operating procedures for clinical research. The Saskatchewan Centre for Patient-Oriented Research (SCPOR) has paid for a group membership in N2, meaning all employees at SCPOR-affiliated institutions may use the N2 resources free of charge.
Online training is available through N2’s Collaborative Institutional Training Initiative (CITI) program. Courses are available on the following topics:
• Good Clinical Practice (GCP)
• Health Canada Division 5 – Drugs For Clinical Trials Involving Human Subjects
• Biomedical Research Ethics
• Social and Behavioral Research Ethics
• Responsible Conduct of Research – Life Science
• Responsible Conduct of Research – Physical Science
• Transportation of Dangerous Goods TDG/IATA
• Privacy in Health Research
Research Support Tools
N2’s research support tools are available on the N2 website. Tools include standard operating procedures, quality assurance resources and research privacy guidelines.
If you would like to access either the online training or the research support tools, please email the contact for SCPOR’s membership in N2, Scott Corley, at email@example.com. For more information, click here.