An institutional ethnographic analysis of public and patient engagement activities at a national health technology assessment agency

2021 ◽  
Vol 37 (1) ◽  
Author(s):  
Julia Bidonde ◽  
Meredith Vanstone ◽  
Lisa Schwartz ◽  
Julia Abelson
Keyword(s):  
Health Technology Assessment ◽  
Technology Assessment ◽  
Patient Engagement ◽  
Health Technology ◽  
Governance Structure ◽  
Organizational History ◽  
Institutional Settings ◽  
Comprehensive Framework ◽  
Ethnographic Analysis ◽  
High Degree

Abstract Objective The practice of public and patient engagement (PPE) in health technology assessment (HTA) has spread worldwide, yet gaps in knowledge remain. We carried out an institutional ethnography of the Canadian Agency for Drugs and Technologies in Health (CADTH) public and patient involvement in HTA. Methods The research took place over 15 months and included observational work in the institutional settings, text review, and interviews with individuals working for or involved with the agency. Results We found that despite demonstrated commitment to PPE, organizational history, governance structure, and practices were impediments to a unified approach to PPE. Unclear role descriptions for committee members and differences in philosophy and priority given to PPE across the organization presented challenges to effective participation. The high degree of value given to evidence-based principles at times conflicted with meaningful integration of patient input. A lack of clear goals and processes, roles, and differential treatment of evidence in PPE served to minimize the importance of patient experiences and to displace their validity. An acknowledgment of conflicts between multiple epistemic traditions at work within HTA activities may strengthen organizational approaches to PPE. Conclusion HTA organizations can learn from this study by reflecting on the challenges described and the recommendations offered to address them. We suggest solidifying CADTH's commitment to PPE with clear agency-wide roles and direction, values, and outcomes, a comprehensive framework, and policy and procedures. An acknowledgment of diverse epistemic traditions, as well as leadership and expertise in PPE, will strengthen CADTH's PPE activities and sustain its leadership position in the HTA field.

VP165 Landscape Assessment: Patient Engagement In Health Technology Assessment

2017 ◽  
Vol 33 (S1) ◽  
pp. 224-225
Author(s):  
Elisabeth Oehrlein ◽  
Jason Harris ◽  
Nicole Labkoff ◽  
Eleanor Perfetto ◽  
Manal Ziadeh ◽  
...  
Keyword(s):  
Health Technology Assessment ◽  
Technology Assessment ◽  
Patient Engagement ◽  
Public Involvement ◽  
Web Search ◽  
Health Technology ◽  
Public Consultation ◽  
Patient Questionnaire ◽  
Draft Guidance ◽  
Stakeholder Consultation

INTRODUCTION:Understanding the current landscape of patient engagement across value decision-making bodies internationally is a critical first step toward improving the patient centricity of Health Technology Assessment (HTA). This study assessed: (i) Terms and definitions used; (ii) Patient engagement opportunities; (iii) Evidence of patient engagement.METHODS:A sample of country-specific HTA's (HTA; n = 6), professional organizations (PO; n = 4), and collaborations/independent organizations (CO; n = 3) was selected for representativeness. Information was gathered through: (i) targeted web search and (ii) emailing organizations directly. Definitions, HTA methods documents, and the three most recent evaluations were identified, abstracted, and compared. Data were collected between September-October 2016.RESULTS:Numerous terms are used to describe patient engagement: patient input (HTA = 1, PO = 1), patient-group submitted information (HTA = 1), cooperation with patients/users (HTA = 1), public consultation (HTA = 1), patient perspectives (HTA = 1, PO = 1), involvement of people affected (HTA = 1), patient involvement (HTA = 2), patient and public involvement (HTA = 1), lay involvement (HTA = 1), inclusion of patient representative (PO = 3), patient reports (PO = 1), patient preference (PO = 2), public consultation (CO = 1), stakeholder consultation (CO = 1), open input (CO = 1), stakeholder engagement (CO = 1), and patient participation (CO = 1). Opportunities for patient engagement were described as: patient questionnaire (HTA = 2); comment period (HTA = 1; CO = 1); committee participation (HTA = 3; PO = 3); propose topics (HTA = 1); draft guidance (HTA = 1); general stakeholder forum (CO = 1). While organizations outline opportunities for patient engagement, not all organizations have clear evidence the practices are used or have impact. Recent evaluations demonstrate clear evidence of engagement (HTA = 2); Unclear or mixed evidence (HTA = 1; PO = 1; CO = 2); No evidence (HTA = 3; PO = 3; CO = 1).CONCLUSIONS:There is substantial heterogeneity in the terms used to describe patient engagement activities across organizations. While a variety of opportunities for patient engagement are described, lack of clear evidence to how patient engagement practices are consistently used may contribute to the perception that engagement by HTAs.

What does meaningful look like? A qualitative study of patient engagement at the Pan-Canadian Oncology Drug Review: perspectives of reviewers and payers

2018 ◽  
Vol 23 (2) ◽  
pp. 72-79 ◽  
Author(s):  
Linda Rozmovits ◽  
Helen Mai ◽  
Alexandra Chambers ◽  
Kelvin Chan
Keyword(s):  
Health Technology Assessment ◽  
Technology Assessment ◽  
Patient Engagement ◽  
Patient Advocacy ◽  
Health Technology ◽  
Assessment Process ◽  
Advocacy Groups ◽  
Oncology Drug ◽  
Patient Advocacy Groups ◽  
Drug Review

Objectives While there is wide support for patient engagement in health technology assessment, determining what constitutes meaningful (as opposed to tokenistic) engagement is complex. This paper explores reviewer and payer perceptions of what constitutes meaningful patient engagement in the Pan-Canadian Oncology Drug Review process. Methods Qualitative interview study comprising 24 semi-structured telephone interviews. A qualitative descriptive approach, employing the technique of constant comparison, was used to produce a thematic analysis. Results Submissions from patient advocacy groups were seen as meaningful when they provided information unavailable from other sources. This included information not collected in clinical trials, information relevant to clinical trade-offs and information about aspects of lived experience such as geographic differences and patient and carer priorities. In contrast, patient submissions that relied on emotional appeals or lacked transparency about their own methods were seen as detracting from the meaningfulness of patient engagement by conflating health technology assessment with other functions of patient advocacy groups such as fundraising or public awareness campaigns, and by failing to provide credible information relevant to deliberations. Conclusions This study suggests that misalignment of stakeholder expectations remains an issue even for a well-regarded health technology assessment process that has promoted patient engagement since its inception. Support for the technical capacity of patient groups to participate in health technology assessment is necessary but not sufficient to address this issue fully. There is a fundamental tension between the evidence-based nature of health technology assessment and the experientially oriented culture of patient advocacy. Divergent notions of what constitutes evidence and how it should be used must also be addressed.

Ethical Challenges Related to Patient Involvement in Health Technology Assessment

2019 ◽  
Vol 35 (4) ◽  
pp. 253-256 ◽  
Author(s):  
Meredith Vanstone ◽  
Julia Abelson ◽  
Julia Bidonde ◽  
Kenneth Bond ◽  
Raquel Burgess ◽  
...  
Keyword(s):  
Health Technology Assessment ◽  
Technology Assessment ◽  
Patient Engagement ◽  
Patient Involvement ◽  
Technology Policy ◽  
Health Technology ◽  
Ethical Challenges ◽  
Policy Decisions ◽  
The Past ◽  
Ethical Violations

AbstractIncluding information and values from patients in HTA has the potential to improve both the process and outcomes of health technology policy decisions. Accordingly, funding and structural incentives to include patients in HTA activities have increased over the past several years. Unfortunately, these incentives have not yet been accompanied by a corresponding increase in resources, time, or commitment to responsiveness. In this Perspectives piece, we reflect on our collective experiences participating in, conducting, and overseeing patient engagement activities within HTA to highlight the ethical challenges associated with this area of activity. While we remain committed to the idea that patient engagement activities strengthen the findings, relevance, and legitimacy of health technology policy, we are deeply concerned about the potential for these activities to do ethical harm. We use this analysis to call for action to introduce strong protections against ethical violations that may harm patients participating in HTA engagement activities.

scholarly journals European network for Health Technology Assessment, EUnetHTA: Planning, development, and implementation of a sustainable European network for Health Technology Assessment

2009 ◽  
Vol 25 (S2) ◽  
pp. 107-116 ◽  
Author(s):  
Finn Børlum Kristensen ◽  
Marjukka Mäkelä ◽  
Susanna Allgurin Neikter ◽  
Nina Rehnqvist ◽  
Lise Lund Håheim ◽  
...  
Keyword(s):  
Health Technology Assessment ◽  
Technology Assessment ◽  
Best Practice ◽  
Health Technology ◽  
Governance Structure ◽  
European Network ◽  
Independent Evidence ◽  
Planning Development ◽  
High Level ◽  
Financial Transactions

Objectives: The European network on Health Technology Assessment (EUnetHTA) aimed to produce tangible and practical results to be used in the various phases of health technology assessment and to establish a framework and processes to support this. This article presents the background, objectives, and organization of EUnetHTA, which involved a total of sixty-four partner organizations.Methods: Establishing an effective and sustainable structure for a transnational network involved many managerial, policy, and methodological tools, according to the objective of each task or Work Package. Transparency in organization, financial transactions, and decision making was a key principle in the management of the Project as was the commitment to appropriately involve stakeholders.Results: EUnetHTA activities resulted in a clear management and governance structure, efficient partnership, and transnational cooperation. The Project developed a model for sustainable continuation of the EUnetHTA Collaboration.Conclusions: The EUnetHTA Project achieved its goals by producing a suite of practical tools, a strong network, and plans for continuing the work in a sustainable EUnetHTA Collaboration that facilitates and promotes the use of HTA at national and regional levels. Responsiveness to political developments in Europe should be balanced with maintaining a high level of ambition to promote independent, evidence-based information and well-tested tools for best practice based on a strong network of HTA institutions.

VP110 Building Capacity In Health Technology Assessment Through Plain Language

2017 ◽  
Vol 33 (S1) ◽  
pp. 200-201
Author(s):  
Kinneret Globerman
Keyword(s):  
Knowledge Transfer ◽  
Health Technology Assessment ◽  
Technology Assessment ◽  
Patient Engagement ◽  
Health Technology ◽  
The United States ◽  
List Type ◽  
Biomedical Data ◽  
Plain Language ◽  
The Government

INTRODUCTION:Health Technology Assessments (HTAs) and policy papers are generally written in academic style using industry jargon — pharmaceutical, medical, or scientific terminology — with a generous use of abbreviations. Transforming technical or biomedical data into easily understandable text is a necessity and a challenge for all of us if our goal is to facilitate HTA collaboration beyond borders and integrate HTA into healthcare practice. Many countries have legislated for plain language (PL), and organizations globally are beginning to recognize how it helps in the uptake of information, whether geared to healthcare professionals and all those interested in HTA, or the lay public.METHODS:A preliminary, informal online search for legislative and supporting guidance on PL was conducted, and a query sent out to forty-eight International Network of Agencies for Health Technology Assessment (INAHTA) members.RESULTS:•The United States Plain Writing Act of 2010 has legislated that federal agencies use “clear Government communication that the public can understand and use” (1). Of the twenty-one respondents from INAHTA Listserv, seven use plain language in either their knowledge transfer tools (such as executive and research summaries, booklets and fact sheets, and patient or lay material).•The Government of Canada promotes plain language in all of its communications (2).•McMaster University's 2014 Health Forum on strengthening public and patient engagement in HTA in Ontario supported “clarity and consistency in the use of public- and patient-engagement terminology” in HTAs.•A growing number of international health-related and HTA organizations promote PL in their reports and HTAs to help with their health literacy.•Many pharmaceutical companies encourage PL communication in their writing (3).•Of the eighteen INAHTA responses received, eight reported that they use PL in their report summaries, knowledge transfer materials, and/or patient education tools.CONCLUSIONS:Adopting the practice of clear, straightforward writing and editing in all biomedical communication — including HTAs and journal articles — encourages interaction and engagement among patient, public, and healthcare stakeholders invested in HTAs, and their desire to have measured decision making based on comprehensive, informed, and easily understandable information. However, it remains to be seen if PL will be embraced by organizations worldwide. This preliminary, informal inquiry as to its use suggests that the adoption of PL by governments, HTA organizations, and the scientific community worldwide has not yet been fully embraced.

Sign in / Sign up

Export Citation Format

Share Document