Table 2 Key barriers and enabler evidence

Barriers: health status, often age-related, wellness, self-confidence, diagnosis, proficiency in native language, privacy, embarrassment, patient consent, patient/family participation, relatives sometimes impede involvement, ethical issues in research, time factors, meeting paperwork/accessibility/timing, transportation, lay people feeling isolated/affected by the problem, capabilities being underestimated/contributions limited, little direct benefit/involvement fatigue

Factors that could be either barriers or enablers: patients’ experiences/cognitive characteristics shape willingness to be involved in safety/lay people feeling subordinate to clinicians

Enablers in safety: self-efficacy, feeling confident with error prevention/extraversion as a personality trait/attitudes about the fear/risk of errors. Relatives’ involvement in safety (self-administration of medication) in the home, (self-management of oral anticoagulant therapy) in hospital/supporting family members

Enablers in education: self-reflection for users/nurse educators, patients as experts in their care, equal partnerships, increased involvement with mental health service users when well, excellent interpersonal/communication skills (which could also exclude people)

Barriers identified by professionals/institutions: negative attitudes about patient contribution, consumer identity questioned, concerns about consumers’ mental health/unpredictable input/student safety

Factors that could be either barriers or enablers: Health professionals play an important role in enabling patient involvement in patient safety: e.g., clinicians’ communication/listening, nurses’ positive attitudes/avoidance of negative reactions/acceptance of involvement/patients more able to challenge nurses than doctors

Not all patients want/are able to participate in safety. Greater involvement in safety can be achieved by placing patients at the centre of healthcare. Managers can provide an appropriate work environment, through good communication, education/partnership working, role modelling to support involvement, patient feedback on safety/complaints, empowering patients to learn about their own health condition/report incidents

Factors that could be either barriers or enablers: clear definitions/understanding about roles/definitions in PPI, goals of participation, experience/expertise required

Enablers: specification of time commitment. In education/mental health, preparation of role/briefing/debriefing if partnership/equality to be promoted, including clarity of the academic role in supporting users, clarity when explaining research methods

Barriers: Not all teachers/academics are convinced about the benefits of involvement, need for professional self-reflection, more information on teaching expectations, concerns about consumers revisiting painful experiences

Factors that could be either barriers or enablers: provision of knowledge, clear information/communication positively associated with involvement in safety, access to information increases self-efficacy/risk perceptions increasing intention to act, not all patients are adequately informed

Enablers: encouraging patients’ questions/clinicians to wash hands, posters/leaflets as reminders of information, professionals not reacting negatively to challenges, organisational processes can prevent nurses educating patients. Professional knowledge of patient education to promote patient autonomy, guidance for implementing patient/relative led escalation, effective/different methods of communication, adequate interaction time, dialogue, sharing of knowledge, collaborative working valuing users’ expertise

Barriers: limited knowledge of involvement within education/professional institutions, use of technical language/processes/professional jargon, speed at which discussions take place, integrating patients’ experiential knowledge into evidence-based guidelines, emailing large documents rather than face to face meeting, health literacy, researchers’ unfamiliarity with consumer organisations, guidance for telling personal stories

Factors that could be either barriers or enablers: adequate funding/resources for involvement, disclosure of funds available, investment by universities to build engagement, time/cost of involvement, impact of financial incentives on recruitment, methods for collecting patients’ views time consuming/costly, staff time to support service users is costly, payment/remuneration for lay people, but could interfere with welfare benefits, further guidance needed with payments for mental health service users in education. Training for lay people is important [see specific examples in main findings section]. Support for lay people is a key requirement, see specific examples in main findings section]

Enablers: researchers adopting a positive attitude towards involvement/fostering trust/mutual respect, being able to challenge health professionals, collaborative approaches to address power relations, self-reflection/co-publication, co-learning, involving patients at every stage/desired level of involvement

Barriers: power imbalances with healthcare staff, lack of cultural drivers placing patients at the centre of safety/partnerships, hierarchical/elitist/paternalistic medical cultures create passive patients unwilling to engage with their safety, leaving patient concerns unresolved, professionals not relinquishing power/tokenism, resistance to patients’ participation, lack of involvement in key decisions/programmes, professionals feeling threatened by a reduction of influence/resources overwhelmed

Barriers in education: emphasis on educators’ perspectives, lecturers’ positions, as gatekeepers to involvement, frightening experiences lead to nurses using defensive distancing strategies, professional fears about accountability, potential conflicts in professional/user agendas, professional fears about being blamed for deficiencies in mental health services

More broadly barriers include frictions in relationships between professionals/lay members/leadership tensions, differences in priorities between researchers’/PPI members, suboptimal experiences of service users can impact research relationships

Organisational barriers include: competing demands, staff shortages/staff turnover, high patient to nurse ratios, lack of staff buy-in, intervention complexity staff workload/time constraints, clinician fears about challenges to a medical-model. In education barriers include: the structure of teaching sessions, adherence to the rules of the academic institution regardless of implications for consumers, patronising culture/parentalism

In community engagement/participation issues of power, privilege, discrimination, financial inequity, inaccessible communication, distrust and cynicism are barriers to peer partnership

Factors that could be either barriers or enablers: There is a need for an organisational commitment/cultural shift if higher levels of involvement to happen, partnership strategies should be developed/tracked. Wider external drivers include the social, political, economic, geographic impact on community engagement or public health interventions, the influence of government policy/targets on health, a gap in the legal/political commitment to involvement

Factors that could be either barriers or enablers: Concerns were raised about representativeness, lack of diverse perspectives/experiences, recruitment of appropriate participants seen as sensitive/time-consuming, high selection standards needed to address understanding of scientific data/but raises questions about representation, patient organisations may help recruitment but don’t cover many diseases, challenges exist collaborating with groups less willing to be constrained by research evidence

Enablers: structures for reporting PPI to funders. In curriculum design/classroom-based activities [see examples in main findings section]

Factors that could be either barriers or enablers: use of bilingual researchers, independent facilitation, embedding community engagement in the design of interventions. Community engagement processes can influence health outcomes: e.g., adequate time for community members/stakeholders to build relationships/agree on a ‘level playing field' [see results for more details]

A need for adequate participant/provider skills training, administrative support. Greater satisfaction/effectiveness when meetings facilitated/held by community organisations than in clinics/health systems

Transparency, collaboration, honest communication help address barriers to developing relevant community projects. Higher levels of peer engagement increased community involvement/trust, communication/impact. Barriers include: geography/physical location of project activities