Essentials of PatientOriented Research Presented by Helen Kenyon
Essentials of Patient-Oriented Research Presented by: Helen Kenyon SCPOR Executive Director Date: June 2 nd 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 ü ü ü ü ü Canadian Institutes of Health Research University of Saskatchewan e. Health Saskatchewan Health Quality Council Saskatchewan Health Research Foundation Ministry of Health Saskatoon Health Region Regina Qu’Appelle Health Region University of Regina Saskatchewan Polytechnic
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
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 Reference: SPOR – Patient Engagement Framework
What does the term "patient” mean? Current and former patients Patient support groups Caregivers Patient organizations Family Public Community groups People who have experience with a specific condition, service, or treatment
How are patients engaged in patientoriented research? Identifying and prioritising As active members of research teams Monitoring and evaluation Implementation Dissemination Analysing and interpreting data Research design Development of the grant proposal Preparation for execution of study Data collection
Why are we interested in -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
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
un m m s itie Pa tie nt Co s Saskatchewan Centre for Patient-Oriented Research
Oversight Committee Host SCPOR Council
SCPOR platforms Patient Engagement & Empowerment Indigenous Research & Engagement Expertise Data Services Methods Knowledge Translation, Training & Capacity Building Lead Malori Keller Lead Cassandra Wajuntah Leads Kim Hill Tracey Sherin Lead Charlene Haver Lead Jocelyn Ulvick (Mat Leave)
Patient Engagement Platform
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 patientoriented 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 deidentification 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 healthrelated 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
Knowledge Translation, Training & Capacity Building Platform Knowledge Translation • 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 Training & Capacity Building • 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 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 Note: This training is required for all patients, principal investigators, and trainees working on SCPOR projects.
Questions?
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