Patients and public are important stakeholders in health technology assessment but the level of involvement is low – a call to action
Tóm tắt
Health technology assessment (HTA) agencies have an important role in the evaluation and approval of new technologies. They determine their value within a health system so to promote equitable, quality care with available healthcare resources. Many HTA agencies have some mechanism for involving patients in their processes, but there is great variability and an absence of comprehensive, robust practices for involvement. The accelerating pace of medical innovation creates a need to improve the depth and breadth of patient involvement in the HTA process. In this ‘Call to action’, we present ideas from three HTA expert commentaries calling for collaborative learning and to share innovative ideas for changes in HTA. We also draw on examples of HTA agencies creatively pursuing this goal. We propose a ‘Call to action’ for HTA stakeholders to undertake serious dialogue with patient advocates aimed at creating shared goals. HTA agencies can use these goals to ensure meaningful patient involvement at every step of the HTA process. Five elements are explored. In ‘Recognizing the value of shared purpose’, we highlight examples of HTA agencies that have patients working in partnership with medical practitioners and HTA staff. Results include improved processes that instil confidence. ‘Committing to patient involvement as part of HTA culture’ highlights several initiatives aimed at changes in HTA organisational culture to be more inclusive of patients. In ‘Aligning patient and HTA goals’ we cite work in Belgium and New Zealand which places a greater emphasis on quality of life rather than life expectancy and cost-effectiveness. By ‘Integrating patient involvement at every step of the HTA process’ patients can make vital contributions at every stage of the HTA process. We provide two examples of where HTA agencies have successfully involved patients early in the process in order to broaden the scope of evaluations. ‘Developing a common language and working together’ can support transformative dialogue through ‘unified language’. The authors of this commentary ask that agencies and stakeholders involved in HTA take up this call to work together for visionary and transformative elevation of the voice of patients in HTA worldwide.
Tài liệu tham khảo
O'Rourke B, Oortwijn W, Schuller T. International joint task group. The new definition of health technology assessment: a milestone in international collaboration. Int J Technol Assess Health Care. 2020;36(3):187–90. https://doi.org/10.1017/S0266462320000215.
Culyer AJ. Use of evidence-informed deliberative processes – learning by doing: Comment on “Use of evidence-informed deliberative processes by health technology assessment agencies around the globe.”. Int J Health Policy Manag. 2020;9(6):263–5. https://doi.org/10.15171/ijhpm.2019.116.
Health Technology Assessment international (HTAi) 2019 Annual Meeting. Germany. About HTAi. 2019. https://www.htai2019.org/about/. Accessed Dec 2020.
The National Institute for Health and Care Excellence (NICE). what we do. Our programmes. NICE guidance. Technical appraisal guidance. Charging procedure: technology appraisals. 2019. https://www.nice.org.uk/about/what-we-do. Accessed Dec 2020.
Goetghebeur M, Cellier M. Deliberative processes by health technology assessment agencies: a reflection on legitimacy, values and patient and public involvement: Comment on “Use of evidence-informed deliberative processes by health technology assessment agencies around the globe.”. Int J Health Policy Manag. 2020. https://doi.org/10.34172/ijhpm.2020.46.
O’Rourke T, Higuchi KS, Hogg W. Stakeholder participation in system change: a new conceptual model: stakeholder participation in system change. Worldviews Evid-Based Nurs 2016;13(4):261–269. https://doi.org/https://doi.org/10.1111/wvn.12165.
Street J, Stafinski T, Lopes E, Menon D. Defining the role of the public in health technology assessment (HTA) and HTA-informed decision-making processes. Int J Technol Assess Health Care. 2020;36(2):87–95. https://doi.org/10.1017/S0266462320000094.
Oortwijn W, Jansen M, Baltussen R. Use of evidence-informed deliberative processes by health technology assessment agencies around the globe. Int J Health Policy Manag. 2020;9(1):27–33. https://doi.org/10.15171/ijhpm.2019.72.
Norburn L, Thomas L. Expertise, experience, and excellence. Twenty years of patient involvement in health technology assessment at NICE: an evolving story. Int J Technol Assess Health Care. 2020:1–7. https://doi.org/10.1017/S0266462320000860.
Schlander M. HTA agencies need evidence-informed deliberative processes: Comment on “Use of evidence-informed deliberative processes by health technology assessment agencies around the globe.”. Int J Health Policy Manag. 2020;2020. https://doi.org/10.34172/ijhpm.2020.22.
Canadian Agency for Drugs and Technology in Health (CADTH). Vision, Mission and Values. March 2015. https://www.cadth.ca/about-cadth/who-we-are/vision-mission-values. Accessed Dec 2020.
The Pharmaceutical Benefits Scheme (PBS). Pharmaceutical Benefits Advisory Committee (PBAC) Membership. June 2019. https://www.pbs.gov.au/info/industry/listing/participants/pbac. Accessed Dec 2020.
Agency for Care Effectiveness (ACE), Singapore. About Us. 2020. https://www.ace-hta.gov.sg/about-us.html. Accessed Dec 2020.
Scott AM, Wale JL. HTAi patient and citizen involvement in HTA interest group, Patient Involvement and Education Working Group. Res Involv Engagem. 2017;3:2. https://doi.org/10.1186/s40900-016-0052-9.
O’Rourke B, Werkö SS, Merlin T, Huang LY, Schuller T (2020). The ‘top 10’ challenges for health technology assessment: INAHTA viewpoint. Int J Technol Assess Health Care 36(1), 1–4. https://doi.org/https://doi.org/10.1017/S0266462319000825.
Berglas S, Jutai L, MacKean G, Weeks L. Patients' perspectives can be integrated in health technology assessments: an exploratory analysis of CADTH common drug review. Res Involv Engagem. 2016 Jun 7;2:21. https://doi.org/10.1186/s40900-016-0036-9.
Wale J, Sullivan M. Exploration of the visibility of patient input in final recommendation documentation for three health technology assessment bodies. Int J Technol Assess Health Care. 2020;36(3):197–203. https://doi.org/10.1017/S0266462320000240.
Liabo K, Boddy K, Bortoli S, Irvine J, Boult H, Fredlund M, Joseph N, Bjornstad G, Morris C. Res Involv Engagem. 2020;6:11. https://doi.org/10.1186/s40900-020-0183-x.
Wale J, Scott AM, Hofmann B, Garner S, Low E, Sansom L. Why patients should be involved in health technology assessment. Int J Technol Assess Health Care. 2017;33(1):1–4. https://doi.org/10.1017/S0266462317000241.
HTAi Patient and Citizen Involvement in HTA Interest Group. Values and Standards for Patient Involvement in HTA. 2014. https://htai.org/interestgroups/pcig/values-and-standards/. Accessed Mar 2020.
Deane K, Delbecque L, Gorbenko O, Hamoir AM, Hoos A, Nafria B, Pakarinen C, Sargeant I, Richards DP, Skovlund SE, Brooke N. Co-creation of patient engagement quality guidance for medicines development: an international multistakeholder initiative. BMJ Innov. 2019;5(1):43–55. https://doi.org/10.1136/bmjinnov-2018-000317.
Scottish Medicines Consortium. Patient and Clinician Engagement (PACE) process. 2020. https://www.scottishmedicines.org.uk/how-we-decide/pace/. Accessed Mar 2020.
Pomey MP, Brouillard P, Ganache I, Lambert L, Boothroyd L, Collette C, et al. Coconstruction of health technology assessment recommendations with patients: an example with cardiac defibrillator replacement. Health Expect 2020;23(1):182–192.
Pomey MP, Flora L, Karazivan P, Dumez V, Lebel P, Vanier MC, et al. The Montreal model: the challenges of a partnership relationship between patients and healthcare professionals. Sante Publique (Paris). 2015;27:41–50.
Roy M, Ganache I, Dagenais P. Advocating for a better engagement of patients, users, caregivers, and citizens in healthcare and social services technology assessment (HSTA). Commentary on “assess, triangulate, converge, and recommend (ATCR): a process for developing recommendations for practice in the social sector using scientific, contextual and experiential data”. Int J Hosp Based Health Technol Assess. 2018;1:15–8.
Goetghebeur MM, Wagner M, Samaha D, O'Neil W, Badgley D, Castro-Jaramillo H, et al. Exploring values of health technology assessment agencies using reflective multicriteria and rare disease case. Int J Technol Assess Health Care. 2017;33(4):504–20. https://doi.org/10.1017/s0266462317000915.
Addario B, Geissler J, Horn MK, Krebs LU, Maskens D, Oliver K, Plate A, Schwartz E, Willmarth N. Including the patient voice in the development and implementation of patient-reported outcomes in cancer clinical trials. Health Expect. 2019 Nov 13. https://doi.org/10.1111/hex.12997.
U.S. Food & Drug Administration (FDA). CDER Patient-Focused Drug Development. December 2020. https://www.fda.gov/drugs/developmentapproval-process-drugs/cder-patient-focused-drug-development. Accessed Dec 2020.
Nolte E, Merkur S, Anell A, editors. Achieving person-centred health systems: evidence, strategies and challenges [internet]. Cambridge: Cambridge University Press; 2020. https://doi.org/10.1017/9781108855464.
Hashem F, Calnan MW, Brown PR. Decision making in NICE single technology appraisals: how does NICE incorporate patient perspectives? Health Expect. 2018;21(1):128–37.
Boothe K. "getting to the table": changing ideas about public and patient involvement in Canadian drug assessment. J Health Polit Policy Law. 2019;44(4):631–63. https://doi.org/10.1215/03616878-7530825.
Cleemput I, Dauvrin M, Kohn L, Mistiaen P, Christiaens W, Léanard C. KCE Reports 320: Position of KCE on patient involvement in health care policy research. 2019. https://kce.fgov.be/en/position-of-kce-on-patient-involvement-in-health-care-policy-research. Accessed March 2020.
European Network for Health Technology Assessment (EUnetHTA). Vision, Mission, and Values. 2012. https://eunethta.eu/about-eunethta/missionvision-andvalues/#:~:text=The%20mission%20of%20EUnetHTA%20is,HTA%20in%20countries%20across%20Europe. Accessed Dec 2020.
The Health Intervention and Technology Assessment Program (HITAP). Annual report. 2010. https://www.hitap.net/en/documents/18617. Accessed Dec 2020.
Leopold C, Lu CY, Wagner AK. Integrating public preferences into national reimbursement decisions: a descriptive comparison of approaches in Belgium and New Zealand. BMC Health Serv Res. 2020;20(1):351. https://doi.org/10.1186/s12913-020-05152-2.
Bond K, Stiffell R, Ollendorf D. Principles for deliberative processes in health technology assessment. Int J Technol Assess Health Care. 2020:1–8. https://doi.org/10.1017/S0266462320000550.
Canadian Agency for Drugs and Technologies in Health (CADTH). Canadian Drug Expert Committee (CDEC). 2020. https://www.cadth.ca/collaboration-and-outreach/advisory-bodies/canadian-drug-expert-committee-cdec. Accessed Dec 2020.
The pan-Canadian Oncology Drug Review (pCODR) Expert Review Committee (pERC). The pCODR Expert Review Committee (pERC). 2020.https://www.cadth.ca/collaboration-and-outreach/advisory-bodies/pcodr-expert-review-committee-perc. Accessed Dec 2020.
Facey KM, Bedlington N, Berglas S, Bertelsen N, Single ANV, Thomas V. Putting patients at the Centre of Healthcare: Progress and challenges for health technology assessments. Patient. 2018;11(6):581–9. https://doi.org/10.1007/s40271-018-0325-5.
Abelson J, Wagner F, DeJean D, Boesveld S, Gauvin FP, Bean S, Axler R, Petersen S, Baidoobonso S, Pron G, Giacomini M, Lavis J. Public and patient involvement in health technology assessment: a framework for action. Int J Technol Assess Health Care. 2016 Jan;32(4):256–64. https://doi.org/10.1017/S0266462316000362.
Halabi IO, Scholtes B, Voz B, et al. Patient participation and related concepts : a scoping review on their dimensional composition. Patient Educ Couns 2020;103(1), 5–14. https://doi.org/https://doi.org/10.1016/j.pec.2019.08.001.
Palmer VJ. The participatory zeitgeist in health care: it is time for a science of participation. J Participat Med. 2020;12(1):e15101. https://doi.org/10.2196/15101https://jopm.jmir.org/2020/1/e15101/.
McNally D, Sharples S, Craig G, Goraya A. Patient leadership: Taking patient experience to the next level? Patient Exp J. 2015;2(2):3 Available at: https://pxjournal.org/journal/vol2/iss2/3.
Pomey, M-P, Morin E, Neault C, Biron V, Houle L, Lavigueur L, Bouvette G, St-Pierre N, Beaumont M. Patient Advisors: How to implement a process for involvement at all levels of governance in a healthcare organization. Patient Patient Exp J. 2016; Vol. 3 : Iss. 2 , Article 15. Available at: https://pxjournal.org/journal/vol3/iss2/15.
Reynolds L, Sariola S. Editorial. The ethics and politics of community engagement in global health research. Crit Public Health 2018;28(3);257–268. Global Health Bioethics Network. doi.org/https://doi.org/10.1080/09581596.2018.1449598.
Australian Government Department of Health HTA Consumer Consultative Committee. 2020.https://www1.health.gov.au/internet/hta/publishing.nsf/Content/ccc. Accessed Dec 2020.
Scottish Medicines Consortium (SMC) Public Involvement Network Advisory Group. 2020. https://www.scottishmedicines.org.uk/about-us/publicinvolvement/public-involvement-network-advisory-group/. Accessed Dec 2020.
Canadian Agency for Drugs and Technology in Health (CADTH) Patient and Community Advisory Committee. 2020. https://www.cadth.ca/patient-andcommunity-advisory-committee. Accessed Dec 2020.