Abstract
HTA in Canada takes place at the hospital, regional, provincial/territorial and pan-Canadian levels. Each HTA programme has a different remit, depending on stakeholder needs, and can include assessment of medicines, medical devices, diagnostics, procedures and health and social service programmes. Canadian HTA organisations share common goals for patient involvement but have developed different approaches to achieve them that fit within available resources, timelines and expertise. In this chapter, due to the large number of programmes, we describe patient involvement within a subset that represents HTA at different jurisdictional levels. The included examples are not an exhaustive representation of patient involvement in HTA in Canada; however, they should provide a comprehensive description of the range of strategies used. We begin by describing patient involvement strategies across seven HTA organisations, as summarised in Tables 21.1 and 21.2. We compare strategies and highlight unique features and challenges within each programme. We close the chapter with a focus on how some Canadian HTA organisations are evaluating and accordingly adapting their patient involvement strategies.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
References
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 Involvement Engagem. 2016;2:21. doi:10.1186/s40900-016-0036-9.
Best Medicines Coalition. Health technology assessment in Canada: improving the system and ensuring the patient voice is heard. Position paper. 2014. http://www.bestmedicines.ca/node/168. Accessed 11 Jul 2016.
British Columbia PharmaCare. Conflict of interest guidelines: for the drug benefit review process. British Columbia Ministry of Health Services. 2009. http://www2.gov.bc.ca/assets/gov/health/health-drug-coverage/pharmacare/dbc-coi-guidelines.pdf. Accessed 20 Jun 2016.
British Columbia PharmaCare. Drug Benefit Council–terms of reference. British Columbia Ministry of Health Services. 2010. http://www2.gov.bc.ca/assets/gov/health/health-drug-coverage/pharmacare/dbc-termsofref.pdf. Accessed 20 Jun 2016.
CADTH. Canadian Drug Expert Committee: terms of reference. 2011a. https://www.cadth.ca/media/corporate/corp_committees/CDEC_TOR_e.pdf. Accessed 20 Jun 2016.
CADTH. Conflict of interest guidelines for CADTH expert committee and panel members. 2011b. https://www.cadth.ca/media/corporate/corp_committees/cadth_coi_guidelines_cedc_members_e.pdf. Accessed 20 Jun 2016.
CADTH. CADTH Heath Technology Expert Review Panel: terms of reference. 2013. https://www.cadth.ca/sites/default/files/corporate/corp_committees/hterp/CADTH_Expert_Review_Panel_TOR_revised_July_2013.pdf. Accessed 20 Jun 2016.
CADTH. Common drug review. Ivacaftor (Kalydeco–Vertex Pharmaceuticals Inc.) Indication: cystic fibrosis with R117H mutation. 2015a (CADTH Canadian Drug Expert Review Committee: final recommendation). https://www.cadth.ca/sites/default/files/cdr/complete/SR0430_complete_Kalydeco_R117H_Nov-23-15_e.pdf. Accessed 11 Jul 2016.
CADTH. Updates for patient groups–June 2015. Five years of patient engagement. 2015b. https://www.cadth.ca/news/update-patient-groups-june-2015. Accessed 17 Jun 2016.
CADTH. New resources to help strengthen pCODR patient advocacy group submissions. 2015c. https://www.cadth.ca/new-resources-help-strengthen-pcodr-patient-advocacy-group-submissions. Accessed 11 Jul 2016.
CADTH. Health Technology Expert Review Panel deliberative framework. 2015d. https://www.cadth.ca/sites/default/files/pdf/hterp/HTERP_DFW_e.pdf. Accessed 17 Jun 2016.
CADTH. Help the patient voice be heard–pERC requires a patient member. 2015e. https://www.cadth.ca/news/help-patient-voice-be-heard-perc-requires-patient-member. Accessed 20 Jun 2016.
CADTH. DNA mismatch repair deficiency tumour testing for patients with colorectal cancer: a health technology assessment. 2016a. (CADTH optimal use report). https://www.cadth.ca/sites/default/files/pdf/OP0522_dMMR_Science_Report.pdf. Accessed 21 Oct 2016.
CADTH. Common drug review. Asfotase alfa (Strensiq—Alexion Pharma Canada Corp.). Indication: pediatric-onset hypophosphatasia. 2016b (CADTH Canadian Drug Expert Review Committee: final recommendation). https://www.cadth.ca/sites/default/files/cdr/complete/SR0443_complete_Strensiq-Apr-4-16_e.pdf. Accessed 17 Jun 2016.
CADTH. DNA mismatch repair deficiency tumour testing for patients with colorectal cancer: recommendations. 2016c. (CADTH optimal use report). https://www.cadth.ca/sites/default/files/pdf/OP0522_dMMR_Report_Recommendations.pdf. Accessed 21 Oct 2016.
CADTH. CADTH Patient Community Liaison Forum. 2016d. https://www.cadth.ca/cadth-patient-community-liaison-forum. Accessed 20 Jun 2016.
CADTH. Common drug review. Elosulfase alfa resubmission (Vimizim–Biomarin Pharmaceutical (Canada) Inc.). Indication: mucopolysaccharidosis IVA (morquio A syndrome). 2016e (CADTH Canadian Drug Expert Review Committee: final recommendation). https://www.cadth.ca/sites/default/files/cdr/complete/SR0456_complete_Vimizim_May-26_16.pdf. Accessed 11 Jul 2016.
CADTH-pCODR. pan-Canadian oncology drug review: patient engagement guide. 2015. https://www.cadth.ca/sites/default/files/pcodr/pCODR%27s%20Drug%20Review%20Process/pcodr-patient-engagement-guide.pdf. Accessed 17 Jun 2016.
CCAN, Canadian Cancer Action Network, CADTH pan-Canadian Oncology Drug Review (pCODR). Cancer drug pipeline information for patient advocacy groups. 2016. https://www.cadth.ca/sites/default/files/pcodr/Communications/pCODR-CCAN_HTA_Pipeline.pdf. Accessed 11 Jul 2016.
pCODR, pan-Canadian oncology drug review. pCODR Patient Advocacy Group feedback on a pERC initial recommendation–enzalutamide (Xtandi) for first line mCRPC. 2015. https://www.cadth.ca/sites/default/files/pcodr/pcodr_enzalutamide_xtandi_1stln_mcrpc_ptfdk_pcc.pdf. Accessed 11 Jul 2016.
Dipankui MT, Gagnon MP, Desmartis M, Legare F, Piron F, Gagnon J, et al. Evaluation of patient involvement in a health technology assessment. Int J Technol Assess Health Care. 2015;31:166–70. doi:10.1017/S0266462315000240.
Facey K, Boivin A, Gracia J, Hansen HP, Lo Scalzo A, Mossman J, et al. Patients' perspectives in health technology assessment: a route to robust evidence and fair deliberation. Int J Technol Assess Health Care. 2010;26:334–40. doi:10.1017/S0266462310000395.
Gagnon MP, Desmartis M, Dipankui MT, Gagnon J, St-Pierre M. Alternatives to seclusion and restraint in psychiatry and in long-term care facilities for the elderly: perspectives of service users and family members. Patient. 2013;6:269–80. doi:10.1007/s40271-013-0023-2.
Gagnon MP, Desmartis M, Gagnon J, St-Pierre M, Gauvin FP, Rhainds M, et al. Introducing the patient's perspective in hospital health technology assessment (HTA): the views of HTA producers, hospital managers and patients. Health Expect. 2014;17:888–900. doi:10.1111/hex.12010.
Gagnon MP, Desmartis M, Gagnon J, St-Pierre M, Rhainds M, Coulombe M, et al. Framework for user involvement in health technology assessment at the local level: views of health managers, user representatives, and clinicians. Int J Technol Assess Health Care. 2015;31:68–77. doi:10.1017/S0266462315000070.
Gauvin FP, Abelson J, Giacomini M, Eyles J, Lavis JN. Moving cautiously: public involvement and the health technology assessment community. Int J Technol Assess Health Care. 2011;27:43–9. doi:10.1017/S0266462310001200.
Gauvin FP, Abelson J, Lavis JN. Evidence brief: strengthening public and patient engagement in health technology assessment in Ontario. McMaster Health Forum. 2014. https://www.mcmasterhealthforum.org/docs/default-source/Product-Documents/evidence-briefs/public-engagement-in-health-technology-assessement-in-ontario-eb.pdf?sfvrsn=2. Accessed 11 Jul 2016.
Hansen HP. Patient aspects in HTA. In: Kristensen FB, Sigmund H, editors. Health technology assessment handbook. 2nd ed. Copenhagen: National Board of Health, Danish Centre for Health Technology Assessment; 2008. p. 104–11. http://sundhedsstyrelsen.dk/~/media/ECAAC5AA1D6943BEAC96907E03023E22.ashx. Accessed 17 Jun 2016.
Hansen HP, Lee A, van Randwijk CB. Patient aspects: a review of fifty-eight Danish HTA reports. Int J Technol Assess Health Care. 2011;27:330–6. doi:10.1017/S0266462311000535.
Harden A, Garcia J, Oliver S, Rees R, Shepherd J, Brunton G, et al. Applying systematic review methods to studies of people's views: an example from public health research. J Epidemiol Community Health. 2004;58:794–800. doi:10.1136/jech.2003.014829.
Korhonen A, Hakulinen-Viitanen T, Jylha V, Holopainen A. Meta-synthesis and evidence-based health care—a method for systematic review. Scand J Caring Sci. 2013;27:1027–34. doi:10.1111/scs.12003.
Leggett L, Coward S, Soril L, Weaver C, MacKean G, Noseworthy T, et al. Hepatitis C screening in Alberta: a health technology assessment. Calgary: Health Technology Assessment Unit, University of Calgary; 2016. http://www.health.alberta.ca/documents/AHTDP-HepatitisC-Screening-HTA-Report-2016.pdf. Accessed 17 Jun 2016
Medical Advisory Secretariat. Decision determinants guidance document: the Ontario Health Technology Advisory Committee (OHTAC) decision-making process for the development of evidence-based recommendations. Ontario Ministry of Health and Long-Term Care. 2010. http://www.hqontario.ca/en/mas/tech/pdfs/2011/guide_decision.pdf. Accessed 17 Jun 2016.
OHTAC, Public Engagement Subcommittee. Public engagement for health technology assessment at Health Quality Ontario—final report from the Ontario Health Technology Advisory Committee Public Engagement Subcommittee. Queen's Printer for Ontario. 2015. http://www.hqontario.ca/Portals/0/documents/evidence/special-reports/report-subcommittee-20150407-en.pdf. Accessed 4 Aug 2016.
Public Appointments Secretariat. Committee to evaluate drugs: agency details. Toronto, ON: Government of Ontario; 2015. https://www.pas.gov.on.ca/scripts/en/BoardDetails.asp?boardID=817. Accessed 20 Jun 2016
Public Appointments Secretariat. Personal and conflict of interest disclosure statement. In: General information. Toronto, ON: Government of Ontario; 2016. https://www.pas.gov.on.ca/scripts/en/generalInfo.asp?#5. Accessed 20 Jun 2016.
Rader T, Bond K. Patient input into the CADTH Common Drug Review: is specific feedback useful to patient groups in preparing patient input submissions? Poster presented at: HTAi 2016 annual meeting: informing health care decisions with values and evidence. 2016 May 10–14; Tokyo.
Rowe G, Frewer LJ. A typology of public engagement mechanisms. Sci Technol Human Values. 2005;30:251–90. doi:10.1177/0162243904271724.
SECOR. CADTH patient input process review: findings and recommendations. CADTH. 2012. https://www.cadth.ca/sites/default/files/pdf/2012_SECOR_Patient-Input-Review_e.pdf. Accessed 4 Aug 2016.
van Thiel G, Stolk P. Background paper 8.5: patient and citizen involvement. Update on 2004 background paper. World Health Organization. 2013 (Priority medicines for Europe and the world. 2013 Update). http://www.who.int/medicines/areas/priority_medicines/BP8_5Stakeholder.pdf. Accessed 11 Jul 2016.
Thomas V, Meredith B. The role of the Chair in patient and public involvement: training and support (2012). In: G-I-N Public Working Group, editor. G-I-N public toolkit: patient and public involvement in guidelines. Guidelines International Network. .2015. pp. 64–75. http://www.g-i-n.net/document-store/working-groups-documents/g-i-n-public/toolkit/toolkit-2015. Accessed 11 Jul 2016.
Vanstone M, Giacomini M. Using qualitative research methods to solicit patient experiences and values for health technology policy-making. McMaster University. 2016 (Presented at the 2016 CADTH Symposium, concurrent session B5). https://www.cadth.ca/sites/default/files/symp-2016/presentations/april11-2016/Concurrent-Session-B5-Meredith-Vanstone.pdf. Accessed 11 Jul 2016.
Vanstone M, Rewegan A, Brundisini F, Dejean D, Giacomini M. Patient perspectives on quality of life with uncontrolled type 1 diabetes mellitus: a systematic review and qualitative meta-synthesis. Ont Health Technol Assess Ser. 2015a;15:1–29. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4664939. Accessed 17 Jun 2016
Vanstone M, Yacoub K, Giacomini M, Hulan D, McDonald S. Women's experiences of publicly funded non-invasive prenatal testing in Ontario, Canada: considerations for health technology policy-making. Qual Health Res. 2015b;25:1069–84. doi:10.1177/1049732315589745.
Weeks L, Moulton K, Rader T, Garland S, Bond K. Integrating qualitative research into health technology assessment in Canada: the CADTH experience. CADTH. 2016 (Presented at the 2016 CADTH Symposium, concurrent session B5). https://www.cadth.ca/sites/default/files/symp-2016/presentations/april11-2016/Concurrent-Session-B5-Laura-Weeks.pdf. Accessed 17 Jun 2016.
Acknowledgements
The author would like to acknowledge comments received from the following individuals while preparing the original transcript. All views are entirely the responsibility of the authors.
Ken Bond, CADTH
Alexandra Chambers, CADTH pCODR
Winnie Chan, OPDP
Anderson Chuck, IHE
Fiona Clement, HTA Unit, University of Calgary
Tijana Fazlagic, Ministry of Health, BC
Monique Fournier, INESSS
Marie-Pierre Gagnon, CHU de Quebec Research Centre
Helen Mai, CADTH pCODR
Marie-Pascale Pomey, INESSS
Brent Ruddock, OPDP
Francoise Thomas, INESSS
Mark Weir, HQO
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2017 Springer Nature Singapore Pte Ltd.
About this chapter
Cite this chapter
Weeks, L., MacPhail, E., Berglas, S., Mujoomdar, M. (2017). Canada. In: Facey, K., Ploug Hansen, H., Single, A. (eds) Patient Involvement in Health Technology Assessment. Adis, Singapore. https://doi.org/10.1007/978-981-10-4068-9_21
Download citation
DOI: https://doi.org/10.1007/978-981-10-4068-9_21
Published:
Publisher Name: Adis, Singapore
Print ISBN: 978-981-10-4067-2
Online ISBN: 978-981-10-4068-9
eBook Packages: MedicineMedicine (R0)