1. Essentials of Patient-Oriented Research
Presented by: Helen Kenyon
SCPOR Executive Director
Date: June 2nd 2017

2. Session objectives In today’s session, you will learn more about:
SCPOR (Saskatchewan Centre for Patient Oriented research)
The characteristics and benefits of patient-oriented research
How SCPOR supports patient-oriented research in Saskatchewan
What services/supports SCPOR offers

3. SCPOR – Saskatchewan Centre for Patient Oriented Research
Partners are
Canadian Institutes of Health Research
University of Saskatchewan
eHealth Saskatchewan
Saskatchewan Health Quality Council
Saskatchewan Health Research Foundation
Ministry of Health
Saskatoon Health Region
Regina Qu’Appelle Health Region
University of Regina
Saskatchewan Polytechnic
The creation of SCPOR represents the culmination of several years of work to build a business plan that truly reflects the health research needs of our province along with being sensitive to health priorities and patient needs.

4. SCPOR – Saskatchewan Centre for Patient Oriented Research
Health research reflects patient needs and is sensitive to health priorities.
Connects patients, families and caregivers with a team of researchers, clinicians, and policy-makers to
Design research questions
Conduct research
Programs of work are chosen by stakeholders
SCPOR teams start with the end in mind. They work with patients, families and caregivers to design research questions which will result in impactful outcomes. SCPOR connects patients, families and caregivers with a team of researchers, clinicians, and policy-makers to conduct research that is intended to improve the health and care of all Saskatchewan people. The research is informed from conception to implementation by all members of that team.
The majority of SCPOR’s work is directed to its programs of research which are chosen by its stakeholders. Initially SCPOR has selected Mental Health and Addictions to which it will be directing most of its resources. More programs will be chosen and supported in the coming years.

5. What is patient-oriented research?
A continuum of research that engages patients as partners
Focuses on patient-identified priorities and improves patient outcomes
Conducted by multi-disciplinary teams in partnership with relevant stakeholders
Aims to apply the knowledge generated to improve health care systems and practices
Review the definition.
Explain the word multi-disciplinary – patients, families, clinicians, policy-makers and researchers
Reference: SPOR – Patient Engagement Framework

6. What does the term "patient” mean?
Current and former patients
Caregivers
Family
Public
Patient support groups
Patient organizations
Community groups
People who have experience with a specific condition, service, or treatment
-All encompassing term
- Encourage everyone to use the term that they feel comfortable with. Ask patients you work with what they wish to be referred to as.

7. How are patients engaged in patient-oriented research?
Identifying and prioritising
Research design
Development of the grant proposal
Preparation for execution of study
Data collection
Analysing and interpreting data
Dissemination
Implementation
Monitoring and evaluation
As active members of research teams
Patients are not just there to sit passively. They provide advice but also may do co-design data collection tools, data collection, co-present findings, etc.

8. Why are we interested in patient-oriented research?
Patients are experts in their experience and possess knowledge gained through living with a condition or illness
It is the most effective way to focus research, practice, and policy-making endeavours on what matters to patients
- Patient oriented research is not the only type of research.

9. Saskatchewan Centre for Patient-Oriented Research (SCPOR)

10. What is SCPOR?
SCPOR’s Mission To build capacity and collaborations to conduct responsive, equitable, innovative, patient-oriented research that continuously improves the care and health of Saskatchewan people
Be sure to explain the acronym
You may choose to speak about the core values depending on your audience.
SCPOR is a virtual office.

11. Saskatchewan Centre for Patient-Oriented Research
Patients
Communities
Explain what it means that these organizations are partnering – ie. In-kind contributions of human resources. All of these groups participate in the (governance) oversight committee of SCPOR.

12. SCPOR Oversight Committee Host Council
Host Council provides leadership and has financial responsibility for SCPOR.
-The mandate of the Oversight Committee is to determine operational strategy for SCPOR that effectively draws on the strengths of each of the SCPOR stakeholders while ensuring the SCPOR Vision and Mission are realized and the Core Values upheld.
Host Council - HQC (Gary Teare and 2 HQC board member), U of S (Preston Smith and 2 reps of the board of governors)
Oversight Committee – representatives from all partners. (I.e. U of R, U of S, RQHR, MOH, SHR, etc.)

13. SCPOR platforms Lead Malori Keller Cassandra Wajuntah Data Services
Patient Engagement & Empowerment
Lead
Malori Keller
Indigenous Research & Engagement Expertise
Cassandra Wajuntah
Data Services
Leads
Kim Hill
Tracey Sherin
Methods
Charlene Haver (Mat Leave)
Knowledge Translation, Training & Capacity Building
Jocelyn Ulvick
In SK, we have organized into 5 platforms. A platform is a portfolio or department team. We are currently in the process of establishing these teams. These teams will support SCPOR programs and projects. They may also support CIHR network teams.

14. Patient Engagement Platform
The Platform is responsible for :
Facilitating recruitment of patient and family advisors
Orientation and training of patient and family advisors to take part in various roles offered in patient oriented research
Facilitating smooth integration of patient and family advisors in the research programs
Mentorship of patient and family advisors on research projects
Determining honoraria guidelines and coaching research teams on the process of allocating honoraria
Working with the SCPOR Patient & Family Advisory Council

15. Indigenous Research & Engagement Expertise Platform
Participate in SCPOR governance, research and research-related activities
Facilitate communication with Indigenous communities to take part in research
Lead research projects to build knowledge and practice, responsive to the needs of Indigenous communities
Provide consultation services for other patient- oriented research in Saskatchewan, and beyond, as capacity permits

16. Data Services Platform
Facilitate access to high quality data and information
Privacy and governance
Collect and share metadata
Data linkage and de-identification
Registry development
Data analyst support
Enable data capture and reporting within clinical workflow
Clinical workflow mapping
Define input, process, outcome measures
Embed data capture into clinical workflow
Analyze, interpret, and report information
Build infrastructure to enable electronic data capture
Strengthen health data competencies in patient oriented research teams
Networking analytical resources in SK
Developing and delivering training

17. Methods Platform
Provide resources and methodology services in patient-oriented research
Develop expertise and capacity in various health- related methodologies
Assess the provincial needs for methodological expertise to address the requirements for SCPOR programs and projects
Coordinate research methodologists and trainees with SCPOR programs and projects
Is a program different than a project? Perhaps a program is a set of related projects?
Emphasize non-financial resources

18. Knowledge Translation, Training & Capacity Building Platform
Plan and execute KT activities for SCPOR programs and other patient-oriented research projects
Disseminate communications relating to patient-oriented research and building provincial capacity to conduct it
Broker knowledge among provincial, national and international groups engaged in patient-oriented research, including discussion groups, workshops, course design and development, etc.
Support implementation research and practice for SCPOR programs

19. Knowledge Translation, Training & Capacity Building Platform
Identify needs in the province relating to research and capacity building in patient-oriented research
Develop and facilitate implementation of training resources, courses, and programs to build capacity for patient-oriented research
Facilitate and approve SCPOR trainee funding

20. Who will SCPOR support? SCPOR Research Program
Patient-Oriented Research Projects
CIHR – SPOR Networks

21. Examples of SCPOR Support
Patient perspectives of death, dying, and the language care providers use to talk about dying: MSc project, Edwards School of Business
Impact of interdisciplinary bedside rounds on patient experience and team collaboration: SHRF funded project
Identifying characteristics of high costs users of health care services with mental health and addictions problems – SPOR PIHCI Network

22. How do researchers/ teams gain access to SCPOR support?
SCPOR website:
Contact with your inquiry and someone from the SCPOR team will get back to you

23. Patient-Oriented Research Training
SPOR: Foundations in Patient-Oriented Research Training Modules
Module 1: Patient-Oriented Research
Module 2: Fundamentals of Health Research in Canada
Module 3: Building Partnerships and Consolidating Teams
Team participation, scheduled as teams are established
Note: This training is required for all patients, principal investigators, and trainees working on SCPOR projects.
For more information on the SPOR module training:
Scheduled dates posted on the SCPOR website (News & Events): scpor.ca
To register, Malori Keller at

24. Questions?