Table 4 Benefits and barriers to patient engagement for patients, providers, leaders and institutions

Patient barriers

Patient benefits

Personal and professional commitments [42]

Helps improve communications [12]

Patients seen as having the time and resources to participate – not always the case [50]

Better understanding of health services [12]

Health status and self-confidence [10, 29]

Commitment to contribute [10]

Time to deal with diagnosis [10]

Patients meet other patients [10]

Financial considerations – need expenses paid [10, 42]

Become empowered and valued for expertise and skills [10, 42]

Time availability & time for project [10, 42]

Not seeing direct personal benefit[10]

‘Involvement fatigue’ [10]

Meeting times (daytime meetings and work) [10, 42]

Provider barriers

Provider benefits

Negative attitudes toward patient involvement [10, 50]

Builds trust and better communication between patients and staff [12]

Lack knowledge of patient involvement [10, 31]

Provides information about patient experience to inform planning and service improvement [12]

Dismissive of how patients can contribute and not forthcoming with information/resources [16, 50]

Helps to provide accessible and responsive services based on local experience and need [12]

Difficulties/unwillingness to explain complex terminology [16, 50]

Enhances patient confidence in health system [12]

Feel threatened by possible reduction of influence, and significant change from medical-model [16, 51]

Difficulties in relinquishing power [32, 52]

Affect on clinician/patient relationship [16]

Leader/Instituion barriers

Leader/Institution benefits

Negative attitudes toward patient involvement [51]

More appropriate, better quality and relevant services [9, 10, 43, 45]

Lack of knowledge of how patients may be involved - little training or guidance for professionals in partnership working or joint decision-making [10]

Service responsive to patients’ needs [32]

Tokenism [1, 32, 50, 52]

Policy, research, practice and patient information that includes consumers’ ideas or addresses their concerns [16, 45]

Leadership may be questioned either way [42]

Organization is participative, accountable and transparent [16, 42]