Hostname: page-component-cd9895bd7-fscjk Total loading time: 0 Render date: 2024-12-25T05:27:30.222Z Has data issue: false hasContentIssue false
  • English
  • Français

Defining the role of the public in Health Technology Assessment (HTA) and HTA-informed decision-making processes

Part of: Special Collection - Methods

Published online by Cambridge University Press:  10 March 2020

Jackie Street Open the ORCID record for Jackie Street [Opens in a new window] ,
Tania Stafinski ,
Edilene Lopes Open the ORCID record for Edilene Lopes [Opens in a new window]  and
Devidas Menon
Jackie Street*
Affiliation:
Australian Centre for Health Engagement, Evidence and Values (ACHEEV), University of Wollongong, Wollongong, Australia
Tania Stafinski
Affiliation:
HTPU, Health Policy and Management, School of Public Health, University of Alberta, Edmonton, Canada
Edilene Lopes
Affiliation:
School of Public Health, University of Adelaide, Adelaide, Australia
Devidas Menon
Affiliation:
Health Policy and Management, School of Public Health, University of Alberta, Edmonton, Canada
*
Author for correspondence: Jackie Street, E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Objectives

The terminology used to describe community participation in Health Technology Assessment (HTA) is contested and frequently confusing. The terms patients, consumers, public, lay members, customers, users, citizens, and others have been variously used, sometimes interchangeably. Clarity in the use of terms and goals for including the different groups is needed to mitigate existing inconsistencies in the application of patient and public involvement (PPI) across HTA processes around the world.

Methods

We drew from a range of literature sources in order to conceptualize (i) an operational definition for the “public” and other stakeholders in the context of HTA and (ii) possible goals for their involvement. Draft definitions were tested and refined in an iterative consensus-building process with stakeholders from around the world.

Results

The goals, terminology, interests, and roles for PPI in HTA processes were clarified. The research provides rationales for why the role of the public should be distinguished from that of patients, their families, and caregivers. A definition for the public in the context of HTA was developed: A community member who holds the public interest and has no commercial, personal, or professional interest in the HTA process

Conclusions

There are two distinct aspects to the interests held by the public which should be explicitly included in the HTA process: the first lies in ensuring democratic accountability and the second in recognising the importance of including public values in decision making.

Keywords

Health technology assessmentMethodologyCommunity participationPatient participation
Type
Method
Information
International Journal of Technology Assessment in Health Care , Volume 36 , Issue 2 , April 2020 , pp. 87 - 95
Copyright
Copyright © Cambridge University Press 2020

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Arnstein, SR (2019) A ladder of citizen participation. J Am Plann Assoc. 85(1), 24–34.CrossRefGoogle Scholar
Tritter, JQ, McCallum, A (2006) The snakes and ladders of user involvement: Moving beyond Arnstein. Health Policy. 76(2), 156–168.CrossRefGoogle ScholarPubMed
Fredriksson, M (2013) Is patient choice democratizing Swedish primary care? Health Policy. 111(1), 95–98.CrossRefGoogle ScholarPubMed
Coulter, A (2007) Engaging patients in health care. Maidenhead, UK: Open University Press.Google Scholar
Fredriksson, M, Tritter, JQ (2017) Disentangling patient and public involvement in healthcare decisions: Why the difference matters. Sociol Health Illn. 39(1), 95–111.CrossRefGoogle ScholarPubMed
Boothe, K (2019) “Getting to the table”: Changing ideas about public and patient involvement in Canadian drug assessment. J Health Polit Policy Law. 44(4), 631–663.CrossRefGoogle ScholarPubMed
Menon, D, Street, J, Stafinski, T, Bond, K (2017) The public: How can it contribute to an understanding of and decisions about the value of a new health technology (Workshop). CADTH: Ottawa.Google Scholar
HTAi Health Technology Assessment international. Patient and Consumer Glossary. Available at: https://htai.org/wp-content/uploads/2018/02/HTAiPatientAndConsumerGlossaryOctober2009_01.pdf. Accessed November 2019.Google Scholar
Oortwijn, W, Broos, P, Vondeling, H, Banta, D, Todorova, L (2013) Mapping of Health Technology Assessment in selected countries. Int J Technol Assess Health Care. 29(4), 424–434.CrossRefGoogle ScholarPubMed
Nanavaty, M, Nyandege, A, Gala, S, Ramesh, V, Mwamburi, M (2016) Understanding Health Technology Assessment (HTA) bodies in major Asia-Pacific (APAC) markets: Systematic evaluation in 10 APAC countries. Value Health. 19(7), A493.CrossRefGoogle Scholar
Holmes, B (2011) Citizens’ engagement in policymaking and the design of public services: Research Paper no. 1 2011–12. Department of Parliamentary Services, Parliamentary Library, Canberra: Parliament of Australia.Google Scholar
Facey, K, Ploug Hansen, H, Single, A (2017) Patient involvement in health technology assessment. 1st ed.Singapore: Springer Nature.CrossRefGoogle Scholar
Norris, P (2011) Democratic deficit: Critical citizens revisited. Cambridge: Cambridge University Press.CrossRefGoogle Scholar
NICE Citizens Council (2014) What are the societal values that need to be considered when making decisions about trade-offs between equity and efficiency. London: National Institute for Health and Care Excellence.Google Scholar
NICE Citizens Council (2008) Departing from the threshold. London: National Institute for Health and Care Excellence.Google Scholar
Wortley, S, Wale, JL (2017) Australia. In: Facey, KM, Ploug Hansen, H, Single, ANV, eds. Patient involvement in health technology assessment. Singapore: Springer Singapore, 237–242.CrossRefGoogle ScholarPubMed
Shah, K (2018) NICE recommendation highlights role of social value judgements. OHE News.Google Scholar
Gauvin, F-P, Abelson, J, Giacomini, M, Eyles, J, Lavis, JN (2011) Moving cautiously: Public involvement and the health technology assessment community. Int J Technol Assess Health Care. 27(1), 43–49.CrossRefGoogle ScholarPubMed
Menon, D, Stafinski, T (2009) Health Technology Assessment in Canada: 20 years strong? Value Health. 12(Suppl 2), S14–S19.CrossRefGoogle ScholarPubMed
Hodgetts, K, Hiller, JE, Street, JM, et al. . (2014) Disinvestment policy and the public funding of assisted reproductive technologies: Outcomes of deliberative engagements with three key stakeholder groups. BMC Health Serv Res. 14(1), 204.CrossRefGoogle ScholarPubMed
Street, JM, Callaghan, P, Braunack-Mayer, AJ, Hiller, JE (2015) Citizens’ perspectives on disinvestment from publicly funded pathology tests: A deliberative forum. Value Health. 18(8), 1050–1056.CrossRefGoogle ScholarPubMed
Bosely, S (2015) Study casts doubt on breast cancer screening. The Guardian. Manchester, UK. Available at: https://www.theguardian.com/society/2015/jul/08/breast-screening-does-not-reduce-cancer-deaths-international-study-warns. Accessed 24 February 2020.Google Scholar
Couldry, N (2007) New media for global citizens? The future of the digital divide debate. Brown J World Affairs. 14(1), 249–261.Google Scholar
Rheingold, H (2007) Smart mobs: The next social revolution. New York: Basic Books.Google Scholar
Pew Research Center (2015) Beyond distrust: How Americans view their government. Washington, DC: Pew Research Center. Available at: http://www.people-press.org/2015/11/23/1-trust-in-government-1958-2015/#.Google Scholar
Mullen, C, Hughes, D, Vincent-Jones, P (2011) The democratic potential of public participation: Healthcare governance in England. Soc Legal Stud. 20(1), 21–38.CrossRefGoogle Scholar
Oliver, A (2014) The Lowy Institute poll. Sydney, Australia: Lowy Institute for International Policy. Available at: http://www.lowyinstitute.org/files/2014_lowy_institute_poll.pdf.Google Scholar
Healthy London Partnership (2019) London's Great Weight Debate. Available at: https://www.healthylondon.org/the-great-weight-debate-archive/. Accessed 24 February 2020.Google Scholar
Abelson, J, Collins, PA (2009) Media hyping and the “Herceptin Access Story”: An analysis of Canadian and UK newspaper coverage. Healthc Policy Politiques de sante. 4(3), e113–e128.CrossRefGoogle ScholarPubMed
Popay, J, Williams, G, Thomas, C, Gatrell, A (1998) Theorising inequalities in health: The place of lay knowledge. Sociol Health Illn. 20(5), 619–644.CrossRefGoogle Scholar
Lindsay-Bellows, MC (2015) Patient involvement in the regulatory process and rare disease patient perceptions of treatment benefits and harms (Thesis). Edmonton: University of Alberta.Google Scholar
Abels, G (2007) Citizen involvement in public policy-making: Does it improve democratic legitimacy and accountability? The case of pTA. Interdiscip Inf Sci. 13(1), 103–116.Google Scholar
Abelson, J, Giacomini, M, Lehoux, P, Gauvin, FP (2007) Bringing “the public” into health technology assessment and coverage policy decisions: From principles to practice. Health Policy. 82(1), 37–50.CrossRefGoogle Scholar
Abelson, J, Wagner, F, DeJean, D, et al. (2016) Public and patient involvement in health technology assessment: A framework for action. Int J Technol Assess Health Care. 32(4), 256–264.CrossRefGoogle Scholar
Anderson, W, Florin, D, Gillam, S, Mountford, L (2002) Every voice counts: Primary care organisations and public involvement. London: The Kings Fund.Google Scholar
Barham, L (2011) Public and patient involvement at the UK National Institute for Health and Clinical Excellence. Patient 4(1), 1–10.CrossRefGoogle ScholarPubMed
Bombard, Y, Abelson, J, Simeonov, D, Gauvin, FP (2011) Eliciting ethical and social values in Health Technology Assessment: A participatory approach. Soc Sci Med. 73(1), 135–144.CrossRefGoogle ScholarPubMed
Degeling, C, Carter, SM, Rychetnik, L (2015) Which public and why deliberate? A scoping review of public deliberation in public health and health policy research. Soc Sci Med. 131, 114–121.CrossRefGoogle ScholarPubMed
Degeling, C, Rychetnik, L, Street, J, Thomas, R, Carter, S (2017) Influencing health policy through public deliberation: Lessons learned from two decades of Citizens’/community juries. Soc Sci Med. 179, 166–171.CrossRefGoogle ScholarPubMed
Gagnon, MP, Desmartis, M, Lepage-Savary, D, et al. . (2011) Introducing patients’ and the public's perspectives to Health Technology Assessment: A systematic review of international experiences. Int J Technol Assess Health Care. 27(1), 31–42.CrossRefGoogle ScholarPubMed
Gauvin, F-P, Abelson, J, Giacomini, M, Eyles, J, Lavis, J (2010) “It all depends”: Conceptualising public involvement in the context of health technologies assessment agencies. Soc Sci Med. 70, 1518–1526.CrossRefGoogle Scholar
Gauvin, F, Abelson, J, Lavis, J (2015) Evidence brief: Strengthening public and patient engagement in health technology assessment. Ontario, Hamilton, Canada: McMaster Health Forum.Google Scholar
Guttman, N (2007) Bringing the mountain to the public: Dilemmas and contradictions in the procedures of public deliberation initiatives that aim to get “ordinary citizens” to deliberate policy issues. Commun Theory. 17(4), 411–438.CrossRefGoogle Scholar
Jorgensen, TB, Bozeman, B (2007) Public values: An inventory. Adm Soc. 39, 354–381.CrossRefGoogle Scholar
Lehoux, P, Daudelin, G, Abelson, J (2012) The unbearable lightness of citizens within public deliberation processes. Soc Sci Med. 74(12), 1843–1850.CrossRefGoogle ScholarPubMed
Lopes, E, Carter, D, Street, J (2015) Power relations and contrasting conceptions of evidence in patient-involvement processes used to inform health funding decisions in Australia. Soc Sci Med. 135(0), 84–91.CrossRefGoogle ScholarPubMed
Lopes, E, Street, J, Carter, D, Merlin, T (2016) Involving patients in health technology funding decisions: Stakeholder perspectives on processes used in Australia. Health Expect. 19(2), 331–344.CrossRefGoogle ScholarPubMed
Menon, D, Stafinski, T (2011) Role of patient and public participation in health technology assessment and coverage decisions. Expert Rev Pharm Out. 11(1), 75–89.Google ScholarPubMed
Merlin, T, Street, J, Holton, C, et al. (2011) Review of MBS items for specific ophthalmology services under the MBS Quality Framework. For consideration by Medical Services Advisory Committee. Canberra, ACT: Commonwealth of Australia.Google Scholar
Nabatchi, T. Putting the public back in public values research: Designing public participation to identify and respond to public values. The Copenhagen Public Value Consortium Biennial Workshop 2010 – Heterogeneity and convergence in public values research; Leiden, The Netherlands June 10–12 2010.Google Scholar
Ploug-Hansen, H, Street, J (2017) Reflections on terms, goals and organisation. In: Facey, K, Ploug-Hansen, H, Single, A, eds. Patient involvement in health technology assessment. Berlin: Springer, 31–42.CrossRefGoogle Scholar
Stafinski, T, Menon, D (2017) Explicating social values for resource allocation decisions on new cancer technologies: We, the jury, find⋯. J Cancer Policy. 14, 5–10.CrossRefGoogle Scholar
Street, J, Duszynski, K, Krawczyk, S, Braunack-Mayer, A (2014) The use of citizens’ juries in health policy decision-making: A systematic review. Soc Sci Med. 109 C, 1–9.CrossRefGoogle Scholar
Street, J, Lopes, E (2017) Deliberative methods to involve patients in HTA. In: Facey, K, Ploug-Hansen, H, Single, A, eds. Patient involvement in health technology assessment. Berlin: Springer, 165–174.CrossRefGoogle Scholar
Whitty, JA (2013) An international survey of the public engagement practices of Health Technology Assessment organizations. Value Health. 16(1), 155–163.CrossRefGoogle ScholarPubMed
Wortley, S, Street, J, Lipworth, W, Howard, K (2016) What factors determine the choice of public engagement undertaken by health technology assessment decision-making organizations? J Health Organ Manag. 30(6), 872–890.CrossRefGoogle ScholarPubMed
Wortley, S, Tong, A, Howard, K (2017) Community views and perspectives on public engagement in health technology assessment decision making. Aust Health Rev. 41(1), 68–74.CrossRefGoogle ScholarPubMed
Young, A, Menon, D, Street, J, Al-Hertani, W, Stafinski, T (2018) Engagement of Canadian patients with rare diseases and their families in the lifecycle of therapy: A qualitative study. Patient. 11(3), 353–359.CrossRefGoogle ScholarPubMed
Supplementary material: File

Street et al. supplementary material

Table S1

Download Street et al. supplementary material(File)
File 14 KB