‘No one wants to be the face of Herpes London’: a qualitative study of the challenges of engaging patients and the public in sexual and reproductive health and HIV/AIDS services

Abstract

Objectives To explore barriers, challenges and best practice within patient and public engagement (PPE) in sexual and reproductive health and HIV (SRHH) services in London.Methods Consultation exercise using qualitative interviews with 27 stakeholders including commissioners, managers, voluntary/ community organizations (VCOs) clinicians and patients, analysed using Framework Analysis and Atlas.ti software.Results Participants recognized PPE's importance, echoing recent political and NHS drives, and highlighted the need for meaningful, empowering PPE, including user-designed methods, peer research and participatory approaches. Although challenging in SRHH and requiring training and support, PPE may help tackle stigma, and promote self-management and patient-centred-care, including peer education and role modelling. Expertise may come from experienced VCOs. Themes in priority order were: organizational commitment (including lack of dedicated staff, time and money); motivating patients; changing NHS philosophy; informing patients/public; using public awareness/education campaigns; overcoming stigma; working with VCOs. 'Reaching out' to engage underrepresented groups in this sensitive area was emphasized through community outreach, incentivization and linking with existing organizations. Making engagement easy and addressing issues of public value were also important. Stigma was less hindering than anticipated, except for ethnic minorities. PPE was seen to improve patient satisfaction, increase service uptake and reduce inequalities, key priorities in SRHH, and identify innovative service delivery ideas.Conclusions PPE is crucial in creating a patient-led NHS and responsible society. If organizations, including the NHS, commit to implementing meaningful PPE which actively targets those at risk of poor SRHH, services can be truly patient-led and patients and communities empowered to tackle the stigma of SRHH.

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