Review
Knowledge is not power for patients: A systematic review and thematic synthesis of patient-reported barriers and facilitators to shared decision making

https://doi.org/10.1016/j.pec.2013.10.031Get rights and content

Abstract

Objective

To systematically review patient-reported barriers and facilitators to shared decision making (SDM) and develop a taxonomy of patient-reported barriers.

Methods

Systematic review and thematic synthesis. Study findings/results for each included paper were extracted verbatim and entered into qualitative software for inductive analysis.

Results

Electronic and follow-up searches yielded 2956 unique references; 289 full-text articles were retrieved, of which 45 articles from 44 unique studies met inclusion criteria. Key descriptive themes were grouped under two broad analytical themes: how the healthcare system is organized (4 descriptive themes) and what happens during the decision-making interaction (4 descriptive themes, 10 sub-themes). Predominant emergent themes related to patients’ knowledge and the power imbalance in the doctor–patient relationship. Patients need knowledge and power to participate in SDM – knowledge alone is insufficient and power is more difficult to attain.

Conclusion

Many barriers are potentially modifiable, and can be addressed by attitudinal changes at the levels of patient, clinician/healthcare team, and the organization. The results support the view that many patients currently can’t participate in SDM, rather than they won’t participate because they do not want to.

Practice implications

Future implementation efforts should address patient-reported factors together with known clinician-reported barriers and the wider organizational context.

Introduction

Shared decision making (SDM) is viewed as fundamental to safe and effective healthcare when there are legitimate options available to patients [1]. “No decision about me without me” [2], [3] encapsulates the ambition of a more patient-centered healthcare system that promotes SDM, but this ambition is yet to be realized routinely. Despite some successes with SDM implementation (mainly concerning embedding decision support tools, securing policy support, training clinicians, and organizational buy-in) [4], [5], [6], [7], [8], [9], implementation efforts still face considerable difficulties [9], [10], [11]. It is also not clear what role decision support tools play in preparing and enabling patients to engage in a decision-making discussion with a clinician [12]. Implementation researchers well recognize the clinician-perceived barriers and facilitators [4], [6], [13], [14], [15], [16]. Surprisingly, implementation work has not considered the patient perspective in detail. This review examines what patients think helps or hinders them from being involved in making healthcare decisions.

An initial literature search identified several studies seeking to understand patients’ perceptions of the factors promoting or hindering their involvement [17], [18], [19], [20]. A comprehensive synthesis of data from these studies could complement the well-cited taxonomy of clinician barriers and facilitators [13]. Previous work identified factors influencing patients’ preferences for involvement in medical decision-making [21], but most studies examined associations between patient characteristics (e.g. age, coping style) and desired levels of involvement, not actual patients’ views. Whilst we acknowledge that factors affecting patient involvement in decision-making can also be identified through observational methods, which rely on a third party observer, only direct enquiry with patients will afford opportunities to understand why they view particular factors as barriers or facilitators.

One of the earliest papers in this field described what SDM involves: at least two participants, a clinician and patient [22]. However, implementation researchers seem to have overlooked that “it takes at least two to tango” when conducting implementation work. Previous work has identified the powerful influence of long-standing normative beliefs, such as patients being passive and not “rocking the boat” [20], [23]. Implementation researchers need to address these attitudinal issues if other efforts on embedding decision support tools and addressing clinician- and organizational-level barriers are to be more effective. Clinician and organizational perspectives are critically important for implementation efforts, but SDM will not become the “norm” in healthcare, without simultaneously addressing patient-reported barriers. We aimed to systematically review and thematically synthesize patient-reported barriers and facilitators to SDM, seeking to develop a taxonomy to inform implementation work alongside efforts to address clinician and organizational aspects of SDM.

Section snippets

Search strategies & selection criteria

We searched nine electronic databases: (from database inception, no language restrictions): ASSIA (1987>); CINAHL (1982>); BNI (1985>); Embase (1947>); Medline (1946>); Medline in Process; PsycINFO (1806>); Scopus (1966>); Web of Knowledge (1981>). Search strategies combined free-text words and MeSH, or database equivalent, derived from the following broad topic areas: decision-making, barriers/facilitators, and patient-reported (see Appendix A for Medline search strategy). Follow-up searches

Included studies

Electronic and follow-up searches yielded 2956 unique references; 289 full-text articles were retrieved for detailed evaluation. Forty-five articles from forty-four unique studies met inclusion criteria. Fig. 1 describes progress through the review. Studies originated from 15 countries, most published between 2005 and 2012. Thirty of the forty-five articles examined both barriers and facilitators. Full study characteristics are reported in Table 1, including design, methods, and data collection

Discussion

The results suggest that a large number of patients currently can’t participate in healthcare, due to various structural, pre-disposing, interactional, and preparatory factors, rather than the more common view among clinicians that patients won’t participate because they don’t want to. Patient-reported barriers and facilitators to SDM relate to how the healthcare system is organized (i.e. time available, continuity of care, organization of workflow and the setting itself) and to what happens in

Acknowledgements

This work was funded by the Cochrane Institute of Primary Care and Public Health, Cardiff University. We are grateful to Mala Mann, Information Specialist, for her guidance on the development of electronic search strategies, and to the Cochrane Healthcare Quality research group at Cardiff for their valuable comments.

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