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

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

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.

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.

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

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.

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.

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.

Saskatchewan Centre for Patient-Oriented Research (SCPOR)

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.

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.

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.)

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.

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

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

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

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

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

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

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

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

How do researchers/ teams gain access to SCPOR support? SCPOR website: www.scpor.ca Contact scpor_info@usask.ca with your inquiry and someone from the SCPOR team will get back to you

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, email Malori Keller at mkeller@hqc.sk.ca

Questions?