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

From: ‘Practical’ resources to support patient and family engagement in healthcare decisions: a scoping review

Barriers Benefits
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]