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Australian Health Review Australian Health Review Society
Journal of the Australian Healthcare & Hospitals Association
RESEARCH ARTICLE

Community views and perspectives on public engagement in health technology assessment decision making

Sally Wortley A C , Allison Tong A B and Kirsten Howard A
+ Author Affiliations
- Author Affiliations

A Sydney School of Public Health, The University of Sydney, Camperdown, NSW 2006, Australia. Email: allison.tong@sydney.edu.au; kirsten.howard@sydney.edu.au

B Centre for Kidney Research, The Children’s Hospital at Westmead, Corner Hawkesbury and Hainsworth Streets, Westmead, NSW 2145, Australia.

C Corresponding author. Email: sally.wortley@sydney.edu.au

Australian Health Review 41(1) 68-74 https://doi.org/10.1071/AH15221
Submitted: 20 November 2015  Accepted: 9 February 2016   Published: 7 April 2016

Abstract

Objectives The aim of the present study was to describe community views and perspectives on public engagement processes in Australian health technology assessment (HTA) decision making.

Methods Six focus groups were held in Sydney (NSW, Australia) as part of a broad program of work on public engagement and HTA. Eligible participants were aged ≥18 years and spoke English. Participants were asked about their views and perspectives of public engagement in the HTA decision-making process, with responses analysed using a public participation framework.

Results Fifty-eight participants aged 19–71 years attended the focus groups. Responses from the public indicated that they wanted public engagement in HTA to include a diversity of individuals, be independent and transparent, involve individuals early in the process and ensure that public input is meaningful and useful to the process. This was consistent with the public participation framework. Perceived shortcomings of the current public engagement process were also identified, namely the lack of awareness of the HTA system in the general population and the need to acknowledge the role different groups of stakeholders or ‘publics’ can have in the process.

Conclusions The public do see a role for themselves in the HTA decision-making process. This is distinct to the involvement of patients and carers. It is important that any future public engagement strategy in this field distinguishes between stakeholder groups and outline approaches that will involve members of the public in the decision-making process, especially if public expectations of involvement in healthcare decision-making continue to increase.

What is known about this topic? The views and perspectives of patients and consumers are important in the HTA decision-making process. There is a move to involve the broader community, particularly as decisions become increasingly complex and resources more scarce.

What does this paper add? It not been known to what extent, or at what points, the community would like to be engaged with the HTA decision-making process. The present study adds to the evidence base on this topic by identifying features of engagement that may be important in determining the extent of wider public involvement. It is clear that the community expects the system to be transparent, for patients to be involved early in specific processes and the wider community to be able to contribute to the broader vision of the healthcare system.

What are the implications for practitioners? A formalised strategy is needed to include the public voice into health technology decisions. With the current level of reform in the healthcare sector and the focus on creating a sustainable healthcare system, there is a real opportunity to implement an approach that not only informs patients and the community of the challenges, but includes and incorporates their views into these decisions. This will assist in developing and adapting policy that is relevant and meets the needs of the population.

Additional keywords: consumer preferences.


References

[1]  Gabriel SE, Normand SL. Getting the methods right: the foundation of patient-centered outcomes research. N Engl J Med 2012; 367 787–90.
Getting the methods right: the foundation of patient-centered outcomes research.Crossref | GoogleScholarGoogle Scholar | 1:CAS:528:DC%2BC38XhtlGkt7fN&md5=756122df667db582cd598ad69bf19ec6CAS | 22830434PubMed |

[2]  Oliver S, Liabo K, Stewart R, Rees R. Public involvement in research: making sense of the diversity. J Health Serv Res Policy 2015; 20 45–51.
Public involvement in research: making sense of the diversity.Crossref | GoogleScholarGoogle Scholar | 25228453PubMed |

[3]  Sarrami-Foroushani P, Travaglia J, Debono D, Braithwaite J. Key concepts in consumer and community engagement: a scoping meta-review. BMC Health Serv Res 2014; 14 1–9.
Key concepts in consumer and community engagement: a scoping meta-review.Crossref | GoogleScholarGoogle Scholar |

[4]  OHTAC Public Engagement Subcommittee. Public engagement for health technology assessment at Health Quality Ontario: final report. Toronto: Queen’s Printer for Ontario; 2015.

[5]  Stafinski T, Menon D, Philippon DJ, McCabe C. Health technology funding decision-making processes around the world. Pharmacoeconomics 2011; 29 475–95.
Health technology funding decision-making processes around the world.Crossref | GoogleScholarGoogle Scholar | 21568357PubMed |

[6]  Department of Health and Ageing. Review of health technology assessment in Australia. Canberra: Australian Government; 2009. Available at: http://www.health.gov.au/internet/main/publishing.nsf/Content/hta-review-report [verified 13 November 2015].

[7]  Jackson TJ. Health technology assessment in Australia: challenges ahead. Med J Aust 2007; 187 262–4.
| 17767428PubMed |

[8]  Messina MJ, Grainger DL. A pilot study to identify areas for further improvements in patient and public involvement in health technology assessments for medicines. Patient 2012; 5 199–211.
A pilot study to identify areas for further improvements in patient and public involvement in health technology assessments for medicines.Crossref | GoogleScholarGoogle Scholar |

[9]  Whitty JA, Littlejohns P. Social values and health priority setting in Australia: an analysis applied to the context of health technology assessment. Health Policy 2015; 119 127–36.
| 25267072PubMed |

[10]  Saunders C, Girgis A. Status, challenges and facilitators of consumer involvement in Australian health and medical research. Health Res Policy Syst 2010; 8 34
Status, challenges and facilitators of consumer involvement in Australian health and medical research.Crossref | GoogleScholarGoogle Scholar | 21087513PubMed |

[11]  Community Affairs Reference Committee. Availability of new, innovative and specialist cancer drugs in Australia. Canberra: Commonwealth of Australia; 2015. Available at: http://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/Cancer_Drugs/Report [verified 10 October 2015].

[12]  Lopes E, Street J, Carter D, Merlin T. Involving patients in health technology funding decisions: stakeholder perspectives on processes used in Australia. Health Expect 2015;
Involving patients in health technology funding decisions: stakeholder perspectives on processes used in Australia.Crossref | GoogleScholarGoogle Scholar | 25703958PubMed |

[13]  Gauvin FP, Abelson J, Lavis JN. Evidence brief: strengthening public and patient engagement in health technology assessment in Ontario. Hamilton: McMasters Health Forum; 2014. Available at: https://www.mcmasterhealthforum.org/docs/default-source/Product-Documents/evidence-briefs/public-engagement-in-health-technology-assessement-in-ontario-eb.pdf?sfvrsn=2 [verified 13 November 2015].

[14]  Rowe G, Frewer LJ. Public participation methods: a framework for evaluation. Sci Technol Human Values 2000; 25 3–29.
Public participation methods: a framework for evaluation.Crossref | GoogleScholarGoogle Scholar |

[15]  Wortley S, Tong A, Lancsar E, Salkeld G, Howard K. Public preferences for engagement in health technology assessment decision-making: protocol of a mixed methods study. BMC Med Inform Decis Mak 2015; 15 52
Public preferences for engagement in health technology assessment decision-making: protocol of a mixed methods study.Crossref | GoogleScholarGoogle Scholar | 26166149PubMed |

[16]  Wortley S, Tong A, Howard K. Preferences for engagement in health technology assessment decision-making: a nominal group technique with members of the public. BMJ Open 2016; 6 e010265
Preferences for engagement in health technology assessment decision-making: a nominal group technique with members of the public.Crossref | GoogleScholarGoogle Scholar | 26832433PubMed |

[17]  Burton P. Conceptual, theoretical and practical issues in measuring the benefits of public participation. Evaluation 2009; 15 263–84.
Conceptual, theoretical and practical issues in measuring the benefits of public participation.Crossref | GoogleScholarGoogle Scholar |

[18]  Australian Bureau of Statistics (ABS). Education across Australia. Australian social trends 4102.0. 2008. Available at: http://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4102.0Chapter6002008 [verified 13 November 2015].

[19]  Douglas CM, Wilcox E, Burgess M, Lynd LD. Why orphan drug coverage reimbursement decision-making needs patient and public involvement. Health Policy 2015; 119 588–96.
Why orphan drug coverage reimbursement decision-making needs patient and public involvement.Crossref | GoogleScholarGoogle Scholar | 25641123PubMed |

[20]  Cleemput I, Christiaens W, Kohn L, Lonard C, Daue F, Denis A. Acceptability and perceived benefits and risks of public and patient involvement in health care policy: a Delphi survey in Belgian stakeholders. Value Health 2015; 18 477–83.
Acceptability and perceived benefits and risks of public and patient involvement in health care policy: a Delphi survey in Belgian stakeholders.Crossref | GoogleScholarGoogle Scholar | 26091602PubMed |

[21]  Parsons S, Starling B, Mullan-Jensen C, Tham SG, Warner K, Wever K. What the public knows and wants to know about medicines research and development: a survey of the general public in six European countries. BMJ Open 2015; 5 e006420
What the public knows and wants to know about medicines research and development: a survey of the general public in six European countries.Crossref | GoogleScholarGoogle Scholar | 25854965PubMed |

[22]  Brown J. Evaluating participatory initiatives in South Africa. SAGE Open 2014; 4 1–16.
Evaluating participatory initiatives in South Africa.Crossref | GoogleScholarGoogle Scholar | 1:CAS:528:DC%2BC2MXps1ejtrc%3D&md5=e21f85609c620e48f4b394bb4309a94cCAS |

[23]  Clark S, Weale A. Social values in health priority setting: a conceptual framework. J Health Organ Manag 2012; 26 293–316.
Social values in health priority setting: a conceptual framework.Crossref | GoogleScholarGoogle Scholar | 22852453PubMed |

[24]  Littlejohns P, Sharma T, Jeong K. Social values and health priority setting in England: values based decision making. J Health Organ Manag 2012; 26 363–71.
Social values and health priority setting in England: values based decision making.Crossref | GoogleScholarGoogle Scholar | 22852458PubMed |

[25]  Markus A. Trust in the Australian political system. Paper on parliament no. 62. 2014. Available at: http://www.aph.gov.au/senate/~/~/~/~/link.aspx?_id=1713CA0133C845D8B54945046F5C7B8B&_z=z [verified 25 November 2015].

[26]  Meyer SB. Investigations of trust in public and private healthcare in Australia: A qualitative study of patients with heart disease. J Sociol 2015; 51 1–15.
Investigations of trust in public and private healthcare in Australia: A qualitative study of patients with heart disease.Crossref | GoogleScholarGoogle Scholar |

[27]  Ward PR, Rokkas P, Cenko C, Pulvirenti M, Dean N, Carney S, Brown P, Calnan M, Meyer S. A qualitative study of patient (dis)trust in public and private hospitals: the importance of choice and pragmatic acceptance for trust considerations in South Australia. BMC Health Serv Res 2015; 15 1–12.
A qualitative study of patient (dis)trust in public and private hospitals: the importance of choice and pragmatic acceptance for trust considerations in South Australia.Crossref | GoogleScholarGoogle Scholar | 1:CAS:528:DC%2BC2MXns1Wiu7g%3D&md5=4ac3163ac2eae9aa5ec85e95f06ef120CAS |

[28]  Daniels N, Sabin JE. Accountability for reasonableness: an update. BMJ 2008; 337 a1850
Accountability for reasonableness: an update.Crossref | GoogleScholarGoogle Scholar | 18845595PubMed |

[29]  Department of Health. Stakeholder engagement framework. 2015. Available at: http://www.health.gov.au/internet/main/publishing.nsf/Content/1F0E2D5CE7969177CA257EEB00017F66/$File/framework.pdf [verified 30 November 2015].

[30]  Degeling C, Carter SM, Rychetnik L. Which public and why deliberate? A scoping review of public deliberation in public health and health policy research. Soc Sci Med 2015; 131 114–21.
Which public and why deliberate? A scoping review of public deliberation in public health and health policy research.Crossref | GoogleScholarGoogle Scholar | 25770463PubMed |

[31]  Watt AM, Hiller JE, Braunack-Mayer AJ, Moss JR, Buchan H, Wale J, Riitano DE, Hodgetts K, Street JM, Elshaug AG,, for the ASTUTE Health Study Group The ASTUTE Health study protocol: deliberative stakeholder engagements to inform implementation approaches to healthcare disinvestment. Implement Sci 2012; 7 101
The ASTUTE Health study protocol: deliberative stakeholder engagements to inform implementation approaches to healthcare disinvestment.Crossref | GoogleScholarGoogle Scholar | 23088222PubMed |

[32]  Rowe G, Frewer LJ. A typology of public engagement mechanisms. Sci Technol Human Values 2005; 30 251–90.
A typology of public engagement mechanisms.Crossref | GoogleScholarGoogle Scholar |

[33]  Emery SB, Mulder HA, Frewer LJ. Maximizing the policy impacts of public engagement: a European study. Sci Technol Human Values 2015; 40 421–44.
Maximizing the policy impacts of public engagement: a European study.Crossref | GoogleScholarGoogle Scholar |