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BMC Health Services Research
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Open Access 01-12-2024 | Research

Health service provider views on measuring patient involvement in healthcare: an interview study with researchers, clinicians, service managers, and policymakers

Authors: Bente Skovsby Toft, Trine Ellegaard, Berit Kjærside Nielsen, Camilla Blach Rossen, Jens Thusgaard Hørlück, Mette Spliid Ludvigsen, Hilary Louise Bekker, Lotte Ørneborg Rodkjær

Published in: BMC Health Services Research | Issue 1/2024

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Abstract

Background

There are several strategies used to assess involvement in their healthcare across service providers. However, there is no consensus on the most appropriate measurement tool to use when evaluating patient involvement initiatives.
This qualitative study aimed to explore the perspectives of stakeholders from micro, meso, and macro levels within the Danish healthcare system on measuring patient involvement in their healthcare.

Methods

This descriptive, explorative study employed semi-structured interviews with open-ended questions to elicit participants’ views and experiences of patient involvement and measurement tools. A purposeful sample of participants was identified, to include decision makers, researchers, and health professionals (n = 20) with experiences of measuring patient involvement in healthcare at micro, meso, and macro levels across Danish organizations. Data underwent reflexive thematic analysis.

Results

Three main themes were identified: 1) Determining the purpose of patient involvement practices and measurement alignment; 2) Reflecting on the qualities, fit, and usefulness of measures; 3) Recognizing conflicting stakeholder paradigms. Despite the interest in and positive attitudes toward patient involvement innovations, views on the meaning and value of evaluating involvement varied; in part, this was attributable to challenges in selecting criteria, methods, and measures for evaluation.

Conclusion

The findings indicate the need to integrate the perspectives of all key stakeholders in designing the evaluation of patient involvement initiatives. The application of a multiple stakeholder approach and co-production of a multidimensional evaluation may provide some common ground for selecting evaluation criteria and measurement tools in the healthcare setting.

Trial registration

Danish Data Protection Agency (1–16-02–400-21) 15 October 2021.
Appendix
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Literature
1.
Snyder H, Engström J. The antecedents, forms and consequences of patient involvement: a narrative review of the literature. Int J Nurs Stud. 2016;53:351–78.CrossRefPubMed
2.
3.
Ministry of Health. Bekendtgørelse af sundhedsloven [Publication of health law]. Minister for the Interior and Health of Denmark; 2017.
4.
5.
Steffensen KD, Vinter M, Crüger D, Dankl K, Coulter A, Stuart B, Berry LL. Lessons in integrating shared decision-making into cancer care. J Oncol Pract. 2018;14(4):229–35.CrossRefPubMed
6.
Peden C, Campbell M, Aggarwal G. Quality, safety, and outcomes in anaesthesia: what’s to be done? An international perspective Brit J Anaesthesia. 2017;119(suppl_1):i5–14.CrossRef
7.
World Health Organization. Health policy an system research. A methodology redader. The abridged version. Alliance for health policy and system research and World Health Organization; 2013.
8.
Clavel N, Paquette J, Dumez V, Del Grande C, Ghadiri DP, Pomey MP, Normandin L. Patient engagement in care: A scoping review of recently validated tools assessing patients’ and healthcare professionals’ preferences and experience. Health Expect. 2021;24(6):1924–35.CrossRefPubMedPubMedCentral
9.
Toft BS, Rodkjaer L, Andersen AB, de Thurah A, Nielsen B, Nielsen CP, Hørlück JT, Kallestrup L, Schougaard LMV, Ludvigsen MS. Measures used to assess interventions for increasing patient involvement in Danish healthcare setting: a rapid review. BMJ Open. 2022;12(12):e064067.CrossRefPubMedPubMedCentral
10.
Nolte E, Merkur S, Anell A: Achieving person-centred health systems: Evidence, strategies and challenges: Cambridge University Press; 2020.
11.
De Silva D. Helping measure person-centred care: a review of evidence about commonly used approaches and tools used to help measure person-centred care. Health Foundation; 2014.
12.
Dent M, Pahor M. Patient involvement in Europe–a comparative framework. J Health Organ Manag. 2015;29(5):546–55.CrossRefPubMed
13.
Directorate-General for Health and Food Safety. Patient involvement Eurobarometer Qualitative study, Aggregate report. European Commission; 2012.
14.
Bellows M, Kovacs Burns K, Jackson K, Surgeoner B, Gallivan J. Meaningful and effective patient engagement: what matters most to stakeholders. Patient Exp J. 2015;2(1):18–28.CrossRef
15.
Faulkner SD, Sayuri Ii S, Pakarinen C, Somers F. Jose Vicente Edo M, Prieto Remon L, Diaz Ponce A, Gove D, Ferrer E, Nafria B: Understanding multi-stakeholder needs, preferences and expectations to define effective practices and processes of patient engagement in medicine development: A mixed-methods study. Health Expect. 2021;24(2):601–16.CrossRefPubMedPubMedCentral
16.
Steffensen KD, Knudsen BM, Finderup J, Würgler MW, Olling K. Implementation of patient-centred care in Denmark-The way forward with shared decision making. Z Evid Fortbild Qual Gesundheitswes. 2022;171:36–41.CrossRef
17.
Vaismoradi M, Turunen H, Bondas T. Content analysis and thematic analysis: Implications for conducting a qualitative descriptive study. Nurs Health Sci. 2013;15(3):398–405.CrossRefPubMed
18.
Scholl I, Zill JM, Härter M, Dirmaier J. An integrative model of patient-centeredness–a systematic review and concept analysis. PLoS ONE. 2014;9(9):e107828.CrossRefPubMedPubMedCentral
19.
Greenhalgh T, Shaw S, Wherton J, Vijayaraghavan S, Morris J, Bhattacharya S, Hanson P, Campbell-Richards D, Ramoutar S, Collard A. Real-world implementation of video outpatient consultations at macro, meso, and micro levels: mixed-method study. J Med Internet Res. 2018;20(4): e9897.CrossRef
20.
Castro EM, Van Regenmortel T, Vanhaecht K, Sermeus W, Van Hecke A. Patient empowerment, patient participation and patient-centeredness in hospital care: a concept analysis based on a literature review. Patient Educ Couns. 2016;99(12):1923–39.CrossRefPubMed
21.
Härter M, Moumjid N, Cornuz J, Elwyn G, van der Weijden T. Shared decision making in 2017: International accomplishments in policy, research and implementation. Z Evid Fortbild Qual Gesundhwes. 2017;123:1–5.CrossRefPubMed
22.
Braun V, Clarke V. To saturate or not to saturate? Questioning data saturation as a useful concept for thematic analysis and sample-size rationales. Qual Res Sport Exerc Health. 2021;13(2):201–16.CrossRef
23.
24.
Brinkmann S, Kvale S. Interviews : learning the craft of qualitative research interviewing. 3rd ed. Thousand Oaks, Calif: Sage Publications; 2014.
25.
Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.CrossRef
26.
Braun V, Clarke V. Is thematic analysis used well in health psychology? A critical review of published research, with recommendations for quality practice and reporting. Health Psychol Rev. 2023;17(4):1–24.CrossRef
27.
Braun V, Clarke V. Reflecting on reflexive thematic analysis. Qualitative research in sport, exercise and health. 2019;11(4):589–97.CrossRef
28.
Castleberry A, Nolen A. Thematic analysis of qualitative research data: Is it as easy as it sounds? Curr Pharm Teach Learn. 2018;10(6):807–15.CrossRefPubMed
29.
Salmon P, Young B. Qualitative methods can test and challenge what we think we know about clinical communication – if they are not too constrained by methodological ‘brands.’ Patient Educ Couns. 2018;101(9):1515–7.CrossRefPubMed
30.
Kjærside B, Lomborg K, Munch-Hansen T, Riiskjær E. Indikatormål for ‘patientinddragelse’-teoretiske og metodiske overvejelser [Indicator goals for patient involvement]. CFK Folkesundhed og Kvalitetsudvikling, Central Denmark Region; 2015.
31.
Dahler-Larsen P. Evaluering af projekter- og andre ting der ikke er ting. [Evaluation of projects-and other things that are not a thing]. Odense: Syddansk Universitetsforlag; 2013.
32.
de Bienassis K, Kristensen S, Hewlett E, Roe D, Mainz J, Klazinga N. Measuring patient voice matters: setting the scene for patient-reported indicators. Int J Qual Health Care. 2022;34(Supplement_1):ii3–6.CrossRef
33.
Foot C, Gilburt H, Dunn P, Jabbal J, Seale B, Goodrich J, Buck D, Taylor J. People in control of their own health and care. King’s Fund. 2014.
34.
Batalden M, Batalden P, Margolis P, Seid M, Armstrong G, Opipari-Arrigan L, Hartung H. Coproduction of healthcare service. BMJ Qual Saf. 2016;25(7):509–17.CrossRefPubMed
35.
Moore GF, Audrey S, Barker M, Bond L, Bonell C, Hardeman W, Moore L, O’Cathain A, Tinati T, Wight D, Baird J. Process evaluation of complex interventions: Medical Research Council guidance. Br Med J. 2015;350(mar19 6):h1258–h1258.CrossRef
36.
Langley GJ, Moen RD, Nolan KM, Nolan TW, Norman CL, Provost LP. The improvement guide: a practical approach to enhancing organizational performance. San Francisco: Jossey-Bass Publisher; 2009.
37.
O’Cathain A, Croot L, Duncan E, Rousseau N, Sworn K, Turner KM, Yardley L, Hoddinott P. Guidance on how to develop complex interventions to improve health and healthcare. BMJ Open. 2019;9(8): e029954.CrossRefPubMedPubMedCentral
38.
Riiskjær E, Schougaard LMV, Larsen LP, Hjøllund NH. Hvordan kan patientrapporterede oplysninger (PRO) bruges i klinisk praksis? Nordisk sygeplejeforskning. 2014;4(3):189–212.CrossRef
39.
40.
Skivington K, Matthews L, Simpson SA, Craig P, Baird J, Blazeby J, Boyd KA, Craig N, French D, McIntosh E. A new framework for developing and evaluating complex interventions: update of medical research council guidance. BMJ. 2021;374:n2061.
41.
Moore G, Campbell M, Copeland L, Craig P, Movsisyan A, Hoddinott P, Littlecott H, O’Cathain A, Pfadenhauer L, Rehfuess E. Adapting interventions to new contexts—the ADAPT guidance. BMJ. 2021;374:n1679.CrossRefPubMedPubMedCentral
42.
Baxter SK, Blank L, Woods HB, Payne N, Rimmer M, Goyder E. Using logic model methods in systematic review synthesis: describing complex pathways in referral management interventions. BMC Med Res Methodol. 2014;14(1):1–9.CrossRef
43.
Mills T, Lawton R, Sheard L. Advancing complexity science in healthcare research: the logic of logic models. BMC Med Res Methodol. 2019;19(1):1–11.CrossRef
44.
Lynch EA, Mudge A, Knowles S, Kitson AL, Hunter SC, Harvey G. “There is nothing so practical as a good theory”: a pragmatic guide for selecting theoretical approaches for implementation projects. BMC Health Serv Res. 2018;18:1–11.CrossRef
45.
Nilsen P. Making sense of implementation theories, models, and frameworks. Implement Sci. 2015;10:53.
46.
Rehfuess EA, Booth A, Brereton L, Burns J, Gerhardus A, Mozygemba K, Oortwijn W, Pfadenhauer LM, Tummers M, van der Wilt GJ. Towards a taxonomy of logic models in systematic reviews and health technology assessments: a priori, staged, and iterative approaches. Res Synth Meth. 2018;9(1):13–24.CrossRef
47.
Breckenridge K, Bekker HL, Gibbons E, van der Veer SN, Abbott D, Briançon S, Cullen R, Garneata L, Jager KJ, Lønning K. How to routinely collect data on patient-reported outcome and experience measures in renal registries in Europe: an expert consensus meeting. Nephrol Dial Transplant. 2015;30(10):1605–14.CrossRefPubMedPubMedCentral
48.
Hoffmann C, Avery K, Macefield R, Dvořák T, Snelgrove V, Blazeby J, Hopkins D, Hickey S, Gibbison B, Rooshenas L. Usability of an Automated System for Real-Time Monitoring of Shared Decision-Making for Surgery: Mixed Methods Evaluation. JMIR Hum Factors. 2024;11(1):e46698.CrossRefPubMedPubMedCentral
49.
Collins A: Measuring what really matters. Towards a coherent measurement system to support personcentred care London: The Health Foundation. 2014:1–20.
50.
May CR, Eton DT, Boehmer K, Gallacher K, Hunt K, MacDonald S, Mair FS, May CM, Montori VM, Richardson A. Rethinking the patient: using Burden of Treatment Theory to understand the changing dynamics of illness. BMC Health Serv Res. 2014;14(1):1–11.CrossRef
51.
Holm A, Rodkjær LØ, Bekker HL. Integrating Patient Involvement Interventions within Clinical Practice: A Mixed-Methods Study of Health Care Professional Reasoning. MDM Policy Pract. 2024;9(1):23814683241229988.CrossRefPubMedPubMedCentral
52.
World Medical A. Declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA. 2013;310(20):2191–4.CrossRef
Metadata
Title
Health service provider views on measuring patient involvement in healthcare: an interview study with researchers, clinicians, service managers, and policymakers
Authors
Bente Skovsby Toft
Trine Ellegaard
Berit Kjærside Nielsen
Camilla Blach Rossen
Jens Thusgaard Hørlück
Mette Spliid Ludvigsen
Hilary Louise Bekker
Lotte Ørneborg Rodkjær
Publication date
01-12-2024
Publisher
BioMed Central
Published in
BMC Health Services Research / Issue 1/2024
Electronic ISSN: 1472-6963
DOI
https://doi.org/10.1186/s12913-024-11904-1

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