Stirling Bryan, PhD Scientific Director, BC SUPPORT Unit The Rise and Rise of Patient-Oriented Research: What implications for Scotland’s agenda on Realistic Medicine? Stirling Bryan, PhD Scientific Director, BC SUPPORT Unit RHIS Annual Research Symposium, April 25, 2019

Disclosures I am not aware of any actual or potential conflicts of interest in relation to this presentation Some of my relevant roles: Scientific Director, BC SUPPORT Unit, BC AHSN Senior Scientist, Centre for Clinical Epidemiology & Evaluation, VCHRI (research funding contract with BC AHSN) Professor, University of British Columbia Professor (part-time), University of Aberdeen No industry consultancy

Overview of talk Introduction to Canada’s Strategy for Patient-Oriented Research (SPOR), with a particular emphasis on the work moving forward in British Columbia My interpretation of key components of Scotland’s Realistic Medicine initiative Some reflections on Realistic Medicine through a patient-oriented research lens

Canada’s Strategy for Patient-Oriented Research (SPOR) A new partnership in Canadian health research Researchers Patients Care providers Health system decision-makers

What is patient-oriented research? A continuum of research that engages patients as partners Focuses on patient-identified priorities in order to improve patient-centred outcomes Conducted by multidisciplinary teams in partnership with relevant stakeholders Aims to apply the knowledge generated to improve health care systems and practices

Patient engagement SPOR definition: “Meaningful and active collaboration in governance, priority setting, conducting research and/or knowledge translation.”

South Asian TKA patients: research priorities (unpublished)

Why patient engagement? The moral argument People have a right to be involved in endeavours that affect them personally The impact argument We see a need for greater impact on policy and practice change The relevance argument Patients know what matters to them The quality argument Patients bring a unique perspective that complements scientific and academic expertise

Spectrum of engagement Increasing impact on decisions… Inform Consult Involve Collaborate Empower To provide with information To obtain feedback To work with to develop alternatives To partner in each aspect of decision-making To decide International Association for Public Participation (IAP2)

BC SUPPORT Unit’s Methods Clusters

Patient Engagement Methods Cluster Engagement/Consultation Process Online Survey (62 people) 32 Individual Interviews & 2 Focus Groups (38 people) Visioning Workshop (51 people) Tweetchat (27k impressions, ~ 500 engagements) Webinar (16 people) 29 post-webinar views 2nd webinar Oct 24, 2018

Advancing and Embracing Diversity in Patient Engagement in Research in BC

Scotland’s Realistic Medicine initiative

“Building a more personalised approach to care, in partnership with people through shared decision making, is perhaps the most important aim of Realistic Medicine…” “Shared decision making achieves its potential only if healthcare professionals make collaborative decisions with patients and their families.” Catherine Calderwood, CMO for Scotland

How do we know that the public really wants “Realistic Medicine”? Patient surveys “over one-third of respondents told us that they would like to be more involved in decisions about their care” Citizens’ Panel “The willingness to ask some of these questions depends on the behaviour/style of the doctor and how busy they are/or are perceived to be” Citizens’ Jury “to give members of the public an opportunity to consider Realistic Medicine in greater depth”

Returning to the definition of patient-oriented research A continuum of research that engages patients as partners Focuses on patient-identified priorities in order to improve patient-centred outcomes Conducted by multidisciplinary teams in partnership with relevant stakeholders Aims to apply the knowledge generated to improve health care systems and practices

Three general POR reflections on Realistic Medicine Partnerships Patients/citizens, clinicians, and policy-makers as full partners? Methods Evidence-based approach to the initiative? Equity Unintended distributional implications?

www.bcsupportunit.ca sbryan@bcsupportunit.ca