Abstract
This chapter presents patient involvement in HTA in Sweden. It details patient participation and patient-based evidence activities at the Swedish Agency for HTA and Assessment of Social Services (SBU) and the Swedish Dental and Pharmaceutical Benefits Agency (TLV). The chapter is written from the experience of the authors, who have worked with patient involvement at the respective agencies, and covers a number of different initiatives in this area, from the past, as well as current ones. SBU’s experience shows how patients can be involved in a variety of ways throughout an HTA from being consulted with to being part of an advisory group or a reviewer for the HTA. TLV notes the challenges with involving patients in confidential medicine’s reimbursement assessments, but shows how patients can be involved in development and broader ranging issues about medicines’ policies. Both HTA bodies reflect on the importance of developing processes with patients and the need to evaluate impact.
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Notes
- 1.
Swedish Autism and Asperger Association, Swedish Depressive and Manic Depressive Association, Swedish National Partnership for Mental Health (NSPH), Swedish National Association Attention, Swedish Association for Social and Mental Health (RSMH), Swedish Association for Schizophrenia and Allied Disorders, Swedish Association for Obsessive Compulsive Disorder-Ananke.
- 2.
Before searching the literature for relevant qualitative studies for potential inclusion in an overview, it is usual to formulate a question and search policy according to the SPICE model, where S stands for setting, P for perspective, I for intervention, C for comparison and E for evaluation (the Joanna Briggs Institute 2008; A Booth 2004; SBU 2014, p. 18). SPICE is the equivalent of PICO, but used for qualitative studies.
- 3.
Attention deficit hyperactivity disorder.
- 4.
At time of publication, this was Stig Nyman, the Chair of the Swedish Disability Federation (Handikappsförbunden, HSO).
- 5.
Also included were National Partnership for Mental Health (NPMH or NSPH)—a network of organisations for patients, users and next of kin within the psychiatric field; NBHW; MPA; and the Public Health Agency of Sweden (FHM).
- 6.
The meeting was cohosted by SBU, Medicinal Product Agency (MPA), NBHW, FHM and NSPH.
- 7.
The Council for Knowledge-Based Policy has an advisory function and consists of nine governmental agencies: NBHW, MPA, SBU, TLV, the Swedish Research Council for Health, Working Life and Welfare (FORTE), the Public Health Agency, the Health and Social Care Inspectorate (IVO), the Swedish Agency for Participation and the Swedish eHealth Agency.
- 8.
For example, the benefit of surgery of arm fractures, family support and rehabilitation of children with alcohol spectrum disorder (FAS/FASD), parenting interventions for the prevention of physical or psychological child abuse or neglect, and interventions for unaccompanied asylum-seeking young people.
- 9.
At time of publication, the patient representatives in the Board for Pharmaceutical Benefits are from the National Organization for Rare Disorders and the Asthma and Allergy Association. In the Board for Dental Benefits, one of the deputy members represents the Swedish consumer organisation.
- 10.
At time of publication, the representatives are from the Diabetes Association and from the Swedish National Pensioners’ Organisation (PRO).
- 11.
Between 2014 and 2015, approximately 60–70 organisations received these governmental grants.
- 12.
Consisting of representatives appointed by the Swedish Disability Federation (HSO), the PRO, the Swedish Association for Senior Citizens (SPF) and the Swedish Consumers’ Association.
- 13.
In Sweden, all priorities in publicly funded healthcare are based on the ethical platform. The ethical platform was adopted by the parliament in 1997 and is based on three principles: the principle of human dignity, needs and solidarity and cost-effectiveness.
- 14.
For example, during 2015, TLV invited the Swedish Heart and Lung Association, the Swedish Stroke Association and the HSO during the assessment of self-monitoring of warfarin treatment and the Swedish organisation for people with acquired brain injury, the Swedish Stroke Association and HSO during the assessment of thrombectomy.
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Acknowledgements
The authors would like to acknowledge comments received from Karen Facey, Ann Single and Helle Ploug Hansen while revising the original manuscript. All views expressed and any errors contained herein are entirely the responsibility of the authors.
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Werkö, S., Andersson, C. (2017). Sweden. 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_28
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