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The Campaign for McMaster University Strengthening Public and Patient Engagement in Health Technology Assessment: A Framework for Involving Patients and.

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Presentation on theme: "The Campaign for McMaster University Strengthening Public and Patient Engagement in Health Technology Assessment: A Framework for Involving Patients and."— Presentation transcript:

1 The Campaign for McMaster University Strengthening Public and Patient Engagement in Health Technology Assessment: A Framework for Involving Patients and the Public in Health Quality Ontario's Evidence-Review Process Julia Abelson, PhD Frank Wagner, MA Deirdre DeJean, PhD Stephen Petersen, MSc Sarah Boesveld (PhD cand.) Francois-Pierre Gauvin, PhD Mita Giacomini, PhD John Lavis, PhD CADTH Conference 2015 Saskatoon, SK April 14 th, 2015

2 Acknowledgements  Funders  Canadian Institutes of Health Research  Evidence-Informed Healthcare Renewal Policy Analysis grant  Government of Ontario  Ministry of Health and Long-Term Care Health System Research Fund grant “Harnessing Evidence and Values for Health System Excellence”  Collaborators  Health Quality Ontario  Public Engagement Subcommittee of the Ontario Health Technology Advisory Committee (OHTAC)  McMaster Health Forum The Campaign for McMaster University

3 Background & Objectives  Increasing attention to involving patients and members of the public in HTA agencies worldwide  Efforts to produce conceptually robust, evidence- informed frameworks to guide public and patient engagement (PPE) in HTA have been rare  In particular, lack of attention to matching PPE goals and approaches to specific HTA stages The Campaign for McMaster University

4 Background & Objectives (2)  Context:  Ontario’s evidence-review process for health technologies (Health Quality Ontario (HQO), Ontario Health Technology Advisory Committee (OHTAC)) – non-drug HTA  Traditional stakeholder consultation & passive communication and consultation with patients and members of the public (interest in doing more)  Collaboration between researchers and HQO-OHTAC Public Engagement Subcommittee (Jan 2013 – July 2014)  Parallel activities (review of Decision Determinants framework; strategic emphasis on PPE by HQO leadership)  Description and results of framework development process The Campaign for McMaster University

5 Key Elements of the Framework  Articulate the underlying principles, values and goals for public and patient engagement in HTA  Establish a common language to support public and patient engagement efforts  Describe a flexible menu of approaches that can be used depending on the goal and phase of the evidence-review process  Identify and develop measures of engagement and its outcomes that can inform adjustments over time

6 Final Report (released April 8, 2015)

7 Subcommittee membership OHTAC membersExternal membersHQO/EDS Frank Wagner (Chair)Julia Abelson, Deirdre DeJean & Sarah Boesveld (McMaster/CIHR research grant) Shamara Baidoobonso (EDS) Pat CampbellRenata Axler (University of Toronto)Gaylene Pron (EDS) Tony EastySally Bean (Sunnybrook Health Sciences) Stephen Petersen (EDS) Murray KrahnTara Gomes (Ontario Drug Policy Research Network) Heather Thomson (Strategic Partnerships) Dorothy PringleSine Mackinnon (Patient & Public Engagement) Shirlee Sharkey Charles Wright

8 Methods  Committee deliberations informed by:  website review of 53 HTA organizations across 34 countries  stated goals, approaches and experiences with PPE in HTA  review of published literature (PPE in HTA)  reviews, empirical & conceptual studies (1990-2013)  expert consultations (international & local)  stakeholder dialogue (May 2014) The Campaign for McMaster University

9 Conceptual Foundation for the Framework

10 Goals for Public & Patient Engagement Democratic accountability & legitimacy To achieve more informed, transparent, accountable and legitimate decisions about health technologies Scientific To promote a more robust and comprehensive approach to HTA that incorporates social and ethical values, as well as patients’ problems, lived experiences, outcomes and preferences InstrumentalTo enhance the quality of outputs across all stages of the HTA process Developmental To increase public understanding of health technologies and HTA, and strengthening the public’s and patients’ competence and capacity to contribute to health technology policy issues Adapted from Abelson et al. 2007. Bringing the public into health technology assessment and coverage policy decisions. Health Policy; 82(1):37-50.

11 Who to engage with? Patients, families, caregivers/providers Individuals with experiential knowledge about living with an illness or condition who can provide valuable perspectives about the intended or unintended consequences of current or future health technologies Broader publics Individuals who can contribute broad social values regarding the efficiency or fairness of a technology but who may not have specific experience with a particular technology, disease or condition Stakeholder groups Groups with organized interests in the technology, program or service, including its funding and delivery arrangements (e.g., advocacy groups, industry, provider organizations) Facey et al. 2010. Patients’ perspectives in health technology assessment: A route to robust evidence and fair deliberation. IJTAHC; 26(3):334-40.

12 Interact PARTICIPATION Collaborate Involve CONSULTATION Gather Information Inform COMMUNICATION Disseminate How to engage? Three categories of PE activity: Adapted from: Rowe & Frewer (2005). A Typology of public engagement mechanisms. Science, Technology & Human Values; 30(2):251-90.

13 HQO-OHTAC evidence-review process (at the beginning of the committee’s work) 13 HQO drafts brief overview of intervention OHTAC determines which interventions proceed to a full review HQO reviews evidence in consultation with: - Clinical experts and expert panels - Scientific partners - Industry - Government OHTAC drafts recommendations based on evidence-based review Draft review and recommendations are posted on the HQO/OHTAC websites for public and professional comment HQO reviews public and professional comment feedback OHTAC modifies recommendations as required HQO evidence- based review and OHTAC recommendations published on website and announced in e- bulletin OHTAC may request a field evaluation to assess effectiveness and cost- effectiveness of an intervention in the Ontario context 1 SCOPING 7 FIELD EVALUATION 6 POST REVIEW AND RECOMMENDATION 5 ASSESSMENT OF COMMENTS 4 PROFESSIONAL AND PUBLIC CONSULTATION 3 DRAFT OHTAC RECOMMENDATIONS 2 EVIDENCE- BASED ANALYSIS Stakeholder consultation Passive consultation Passive communication

14 Preliminary Framework for Strengthening Public & Patient Engagement 14 HQO drafts brief overview of intervention OHTAC determines which interventions proceed to a full review HQO reviews evidence in consultation with: - Clinical experts and expert panels - Scientific partners - Industry - Government OHTAC drafts recommendations based on evidence-based review Draft review and recommendations are posted on the HQO/OHTAC websites for public and professional comment HQO reviews public and professional comment feedback OHTAC modifies recommendations as required HQO evidence- based review and OHTAC recommendations published on website and announced in e- bulletin OHTAC may request a field evaluation to assess effectiveness and cost- effectiveness of an intervention in the Ontario context 1 SCOPING 7 FIELD EVALUATION 6 POST REVIEW AND RECOMMENDATION 5 ASSESSMENT OF COMMENTS 4 PROFESSIONAL AND PUBLIC CONSULTATION 3 DRAFT OHTAC RECOMMENDATIONS 2 EVIDENCE- BASED ANALYSIS Rationale for PE: Whom to engage with:How to engage: - improved knowledge & awareness - patients, families, providers- communication - higher quality decisions - broader publics- consultation - increased transparency, legitimacy - stakeholder groups- participation Sources: published research, international practice, expert consultations

15 Evidence Review (Key messages) 15

16 Key messages from website scan and literature synthesis General  one-third to two-thirds of organizations reporting some PPE activity (increasing)  very small number have comprehensive approach to PPE (all HTA stages) Goals for PPE  improving the quality of assessments and achieving accountable, legitimate processes are regularly cited goals  no explicit links drawn between the goals for PPE and specific HTA stage PPE (Who, When & How)  increasing efforts to engage the public and patients in early stages (e.g., topic selection, prioritization and scoping stages);  common PPE approaches: communication (web & some social media), consultation (through solicitation of input, feedback on draft documents, focus groups) and direct participation (through membership on committees)

17 Key messages from review of stage- specific PPE in HTA (2) PPE (Who, When & How)  emphasis on incorporating patient values/perspectives through in-depth consultation, qualitative research & patient representation on advisory committees  broader publics tend to be involved at board level or when broader societal considerations are explicitly sought Evaluation  minimal evaluation of the effectiveness or impacts of specific PE mechanisms  primarily descriptive and case study driven; small number of rich ethnographic studies Feasibility/Implementation considerations  numerous cultural and organizational challenges  major enabler is organizational commitment and resources (e.g., time and expertise)  common challenges: how to seek ‘representative’ perspectives; how to balance broad public interest with narrower interests of organization reps

18 McMaster Health Forum Evidence Brief

19 FRAMEWORK & RECOMMENDATIONS

20 Key Elements of the Framework  Articulate the underlying principles, values and goals for public and patient engagement in HTA  Establish a common language to support public and patient engagement efforts  Describe a flexible menu of approaches that can be used depending on the goal and phase of the evidence-review process  Identify and develop measures of engagement and its outcomes that can inform adjustments over time

21 Building a Common Language for Public & Patient Engagement

22 MENU OF APPROACHES & TOOLS

23

24 Newly configured process to include new stage for PPE

25

26 Summary of Approaches

27 Topic Selection: Who and How 0 TOPIC SELECTION & PRIORITIZATION GroupsMechanismTools General/interested public General/interested public Communication Communication  Website description of topic selection process General public General public Patients Patients Patient organizations Patient organizations Consultation Consultation Polling/surveys Polling/surveys  Horizon scanning (media analysis, focus groups, surveys)  Stakeholder meetings/Delphi process (e.g., 2-3 years) Patients Patients Participation Participation Advisory committee representation Advisory committee representation

28 Scoping: Who and How 1 SCOPING (may include expert panel input) GroupsMechanismTools Patient organizations Patient organizations Consultation Consultation  Invited submissions (targeted and web) Patients Patients Consultation Consultation  Social media analysis  Interviews/focus groups Participation Participation  Committee representation (e.g., expert panel)

29 Evidence-Based Analysis: Who and How 2 EVIDENCE-BASED ANALYSIS (may include expert panel input & qualitative meta synthesis) GroupsMechanismTools Patient organizations Patient organizations Consultation Consultation  Invited submissions Patients Patients Consultation Consultation  Surveys  Social media analysis  Qualitative research/synthesis Participation Participation  Committee representation (e.g., expert panel)

30 Draft OHTAC Recommendations: Who and How 3 DRAFT OHTAC RECOMMENDATIONS (process begins in Evidence Review stage) GroupsMechanismTools Patient organizations/patients Patient organizations/patients Consultation Consultation  Expert panel consultation with priority populations Broader publics/patients Broader publics/patients Participation Participation  Explicit discussion of societal/patient values (OHTAC meeting)

31 Professional and Public Consultation: Who and How 4 PROFESSIONAL AND PUBLIC CONSULTATION GroupsMechanismTools Unsolicited public Unsolicited public Patients/patient organizations Patients/patient organizations Communication Communication HQO website posting HQO website posting  Social media profile (selected reports)  Lay review of summary Patient organizations Patient organizations Consultation Consultation Targeted mailings Targeted mailings  Solicited reviews of draft report/face-to-face meetings with priority groups Patients Patients Broader publics Broader publics Participation Participation Committee representation (e.g., expert panel) Committee representation (e.g., expert panel) Citizen panels (for high priority topics triggered by DD framework) Citizen panels (for high priority topics triggered by DD framework)

32 Assessment of Comments: Who and How 5 ASSESSMENT OF COMMENTS GroupsMechanismTools Authors of public comment submissions Authors of public comment submissions Communication Communication  Web posting of comments and actions taken Authors of public comment submissions Authors of public comment submissions Consultation Consultation  Face-to-face meetings to discuss and address concerns (selected)

33 Post Review and Recommendation: Who and How 6 POST REVIEW AND RECOMMENDATION GroupsMechanismTools Broader publics Broader publics Patients Patients Communication Communication Multimedia dissemination of OHTAC report Multimedia dissemination of OHTAC report  Lay review of plain language summary Patient organizations Patient organizations  Targeted dissemination to high priority groups

34 Report Recommendations  1. Increase the transparency of the evidence review process to facilitate a fuller understanding among interested patients, broader publics, and stakeholder groups of how topics are selected and referred to OHTAC  2. Increase the relevance and responsiveness of HQO-OHTAC’s work by undertaking a range of horizon-scanning and consultation activities to prospectively identify potential review topics and emerging issues of concern to patients and priority populations

35 Report Recommendations  3. Embed public and patient engagement in the scoping of all review topics with the following exceptions:  the topic under review concerns technologies with no direct patient interface  The focus of the review is exclusively on the technical aspects of the technology  4. Draw on a range of sources for incorporating societal and patient values into the evidence-based analysis stage. e.g.,  patient members on expert panels,  consultations with individual patients and/or patient groups  synthesis of primary qualitative research studies

36 Report Recommendations  5. Identify dedicated agenda time at monthly meetings for the explicit consideration of societal and patient values relevant to all evidence reviews  6. Enhance public and patient consultation process at the post-appraisal stage to develop increased awareness of its work and to encourage broader input on its draft recommendations

37 Measurement & Evaluation  Weak evidence base for PPE in HTA (and related fields)  Framework provides opportunity to embed evaluation into the initiation of new PPE activities informed by clearly articulated goals, populations and methods  Formative evaluation metrics (examples)  are we meeting our goals for transparency and increased awareness of HQO and OHTAC’s work?  are patient and public members contributing meaningfully and at relevant stages of the HTA process?  (how) are the outputs from PPE activities informing OHTAC & HQO decisions?

38 Implementation  Early stages  Report adopted by HQO Board  Presentations to HQO leadership and staff  Alignment with HQO’s strategic focus on patient, caregiver and public engagement  Need to prioritize and support areas of focus  Stage by stage approach or early vs. later?  Building awareness of Ontario’s evidence review process among interested constituencies  Ensure that training and supports for staff, OHTAC members, patient and citizens are in place from the outset  Ensure that evaluation metrics are developed early on

39 Future Work  How and when should PPE be triggered within the HQO-OHTAC process?  Which PPE approaches for which types of technologies, conditions or populations?

40 Link to Final Report http://www.hqontario.ca/evidence/publications- and-ohtac-recommendations/other-reports/special- reports The Campaign for McMaster University


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