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Reflections on Terms, Goals and Organisation

  • Helle Ploug Hansen
  • Jackie Street
Chapter

Abstract

In this chapter, we address three challenges relating to patient involvement in HTA. Firstly, we reflect on some of the terms often used by HTA researchers, patient organisations and HTA bodies to describe the patients who participate in HTAs including terms such as ‘patient’, ‘patient advocate’, ‘patient representative’, ‘patient partner’ and ‘consumer’. This challenge has previously been described in relation to healthcare in general. Dent and Pahor write: ‘The whole arena of patient involvement within healthcare is riven with problems of meaning, definition and purpose’ (Dent and Pahor 2015). In addition, they argue that the topic is further complicated when one attempts to compare practices across countries (Dent and Pahor 2015). Secondly, we discuss how the choice of term and hence the choice of participants may influence the realisation of goals with patient involvement in HTA. We argue that a challenge lies in confusion about the goals for implementing patient involvement in HTA, particularly when these goals compete with a variety of other goals such as cost containment or decision-making based on strictly defined clinical effectiveness. Thirdly, we address the challenge relating to leadership and organisational change, because some of the goals for patient involvement in HTA will require new ways of organizing and leading HTAs. We briefly introduce three models for organising patient involvement in HTA. The aim of the chapter is to contribute to the current debate on the use of terms to describe patient involvement and the nature of the associated goals and organisation supporting this involvement.

Keywords

Cochlear Implant Patient Advocate Patient Involvement Patient Organisation Patient Representative 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

References

  1. Abelson J, Giacomini M, Lehoux P, Gauvin FP. Bringing ‘the public’ into health technology assessment and coverage policy decisions: from principles to practice. Health Policy. 2007;82:37–50.CrossRefPubMedGoogle Scholar
  2. Bastian H. Speaking up for ourselves: the evolution of consumer advocacy in health care. Int J Technol Assess Health Care. 1998;14:3–23.CrossRefPubMedGoogle Scholar
  3. Batterbury SCE. Evaluation and exclusion from twhe public arena: the case of the British deaf community: chapter 11. In: Boyle R, Breul JD, Dahler-Larsen, editors. Open to the public: evaluation in the public sector. New Brunswick: Transaction Publishers; 2008.Google Scholar
  4. Bridges JF, Jones C. Patient-based health technology assessment: a vision of the future. Int J Technol Assess Health Care. 2007;23:30–5.CrossRefPubMedGoogle Scholar
  5. Busse R, Oravin J, Velasco M, Perleth M, Drummond M, Gurtner F, et al. Best practice in undertaking and reporting health technology assessments. Working group 4 report. Int J Technol Assess Health Care. 2002;18:361–422.CrossRefGoogle Scholar
  6. Dent M, Pahor M. Patient involvement in Europe – a comparative framework. JHOM. 2015;29:546–55.Google Scholar
  7. Deyo RA. Marketing, media, wishful thinking, and conflicts of interest: inflating the value of new medical technology. Permanente J. 2009;13:71–6.CrossRefGoogle Scholar
  8. EMA. Revised framework for interaction between the European medicines agency and patients and consumers and their organisations. EMA/637573/2014 adopted. 2014. http://www.ema.europa.eu/docs/en_GB/document_library/Other/2009/12/WC500018013.pdf. Accessed 19 Nov 2016.Google Scholar
  9. Entwistle VA, Firnig D, Ryan M, et al. Which experiences of health care delivery matter to service users and why? A critical interpretive synthesis and conceptual map. J Health Serv Res Policy. 2012;17:70–8.CrossRefPubMedPubMedCentralGoogle Scholar
  10. EUPATI, Patient education!. 2016.https://www.eupati.eu/. Accessed 11 Oct 2016.
  11. Facey K, Boivin A, Gracia J, et al. Patients’ perspectives in health technology assessment: a route to robust evidence and fair liberation. Int J Technol Assess Health Care. 2010;70:1518–26.Google Scholar
  12. Facey K, et al. Organisation of services for diabetic retinopathy screening. Health technology assessment report 1. Glasgow: Health Technology Board for Scotland; 2001.Google Scholar
  13. Gallego G, Casey R, Norman R, Goodall S. Introduction and uptake of new medical technologies in the Australian health care system: a qualitative study. Health Policy. 2011;2–3:152–8.CrossRefGoogle Scholar
  14. Gauvin FP, Abelson J, Giacomini M, Eyles J, Lavis JN. “it all depends”: conceptualizing public involvement in the context of health technology assessment agencies. Soc Sci Med. 2010;70:1518–26.CrossRefPubMedGoogle Scholar
  15. Gauvin FP, Abelson J, Lavis JN. Evidence brief: strengthening public and patient engagement in health technology assessment in Ontario. Hamilton, Canada: McMaster Health Forum; 2015.Google Scholar
  16. Hansen HP. Evidence-based nursing: must or mantra? In: Kristiansen IS, Mooney G, editors. Evidence-based medicine. In its place. London: Routledge; 2004. p. 33–50.Google Scholar
  17. Harper, D. Online etymology dictionary, 2001–2016. 2016. http://www.etymonline.com/index.php?term=patient&allowed_in_frame=0. Accessed 11 Oct 2016.
  18. Hartzler A, Pratt W. Managing the personal side of health: how patient expertise differs from the expertise of clinicians. J Med Internet Res. 2011;13(3) doi: 10.2196/jmir.1728.
  19. Hodgetts K, Hiller JE, Street JM, Carter D, Braunack-Mayer AJ, Watt AM, et al. Disinvestment policy and public funding for assisted reproductive technologies: outcomes of deliberative engagements with three key stakeholders. BMC Health Serv Res. 2014;14:204.CrossRefPubMedPubMedCentralGoogle Scholar
  20. Hofmann B, Saarni SI. Who can and who should represent the patient? Int J Technol Assess Health Care. 2011;27:403.CrossRefPubMedGoogle Scholar
  21. Holm-Petersen C, Navne LE. Hvad er ledelse af brugerinddragelse? En gennemgang af mål og tre individuelle brugerinddragelsesmodeller. (how to lead patient involvement? Goals and models that organize relations). Bruggerinddragelse Tidsskrift for Forskning i Sygdom og Samfund (J Res Sick Soc). 2015;22:103–33.Google Scholar
  22. HTAi. Interest groups – patient and citizen involvement. 2016a. http://www.htai.org/interest-groups/patient-and-citizen-involvement.html. Accessed 19 Nov 2016 .
  23. Jensen UF. Evidence, effectiveness and ethics: cochrane’s legacy. In: Kristiansen IS, Mooney G, editors. Evidence-based medicine. In its place. London: Routledge; 2004. p. 20–33.Google Scholar
  24. Keating P, Cambrosio A. Cancer on trial. Chicago: University of Chicago Press; 2012.Google Scholar
  25. Kristensen FB, Sigmund H, editors. Health technology assessment handbook. Copenhagen: Danish Centre for Health Technology Assessment, National Board of Health; 2007.Google Scholar
  26. Liberati A, Sheldon TA, Banta HD. Eur-ASSESS project subgroup report on methodology: methodological guidance for the conduct of health technology assessment. Int J Technol Assess Health Care. 1997;13:186–219.CrossRefPubMedGoogle Scholar
  27. Lopes E, Carter D, Street JM. Power relations and contrasting conceptions of evidence in patient involvement processes used to inform health funding decisions in Australia. Soc Sci Med. 2015;135:84–91.CrossRefPubMedGoogle Scholar
  28. Menon D, Stafinski T. Role of patient and public participation in health technology assessment and coverage decisions. Expert Rev Pharmacoecon Outcomes Res. 2011;11:75–89.CrossRefPubMedGoogle Scholar
  29. Royle J, Oliver S. Consumer involvement in the health technology assessment program. Int J Technol Assess Health Care. 2004;20:493–7.CrossRefPubMedGoogle Scholar
  30. Russell J, Greenhalgh T. Being rational and being ‘human’: how national health service rationing decisions are constructed as rational by resource allocation panels. Health. 2014;185:441–57.CrossRefGoogle Scholar
  31. Street J, Braunack-Mayer AJ, Ashcroft R, Facey K, Hiller J. Virtual community consultation? Using the literature and weblogs to link community perspectives and health technology assessment. Health Expect. 2008;11:189–200.CrossRefPubMedPubMedCentralGoogle Scholar
  32. Tritter JQ. Revolution or evolution: the challenges of conceptualizing patient and public involvement in a consumerist world. Health Expect. 2009;12:275–87.CrossRefPubMedPubMedCentralGoogle Scholar
  33. Van der Weyden MB, Armstrong RM. Evidence and Australian health policy. MJAFI. 2004;180:607–8.Google Scholar

Copyright information

© Springer Nature Singapore Pte Ltd. 2017

Authors and Affiliations

  1. 1.Department of Public HealthResearch Unit of General PracticeOdenseDenmark
  2. 2.School of Public HealthUniversity of AdelaideAdelaideAustralia

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