Combining social science methods with mechanisms for community empowerment...
Title of Journal/Name of event : 22nd International AIDS Conference, Amsterdam, Netherlands 23-27 July 2018
Month/Year : July-18
Title of publication : Combining social science methods with mechanisms for community empowerment for the codesign of effective digital health interventions in HIV: Lessons learnt from the H2020 EmERGE project
Link to publication : 22nd International AIDS Conference, Amsterdam, Netherlands 23-27 July 2018
Combining social science methods with mechanisms for community empowerment for the codesign of effective digital health interventions in HIV: Lessons learnt from the H2020 EmERGE project
M. Darking1, B. West2, K. Block2, F. Henwood3, B. Marent3, J. Whetham4
1 University of Brighton, School of Applied Social Science, Brighton, United Kingdom, 2 European Aids Treatment Group, Brussels, Belgium, 3 University of Brighton, Brighton, United Kingdom, 4 Brighton and Sussex University Hospitals Trust, Lawson Unit, Brighton, United Kingdom
Background: The European Commission''s H2020 programme has funded a consortium of 13 organisations including a European-wide civil society organisation, local community partners, clinicians, academics and technology developers to codevelop, implement and commercialise a digital health platform for HIV care in 5 countries. The platform enables HIV-specific, patient data on results, appointments and medications held in the clinical database to be sent via a clinician-led, ''virtual clinic'' to an application on the patient mobile phone through an ongoing process of inclusive codesign.
Description: The European Aids Treatment Group is a project partner and dissemination Workpackage Leader whose activist, capacity-building membership includes community partners in most European countries. In Phase 1 of the programme they mobilised a network of community partners to participate in codesigning the smartphone application. Codesign workshops brought together 97 PLWH and 65 clinicians in: Belgium, Croatia, Portugal, Spain and UK interested in sharing: ideas for app functionalities, concerns and views on the proposal that the app could support a reduction in visits to clinic for people whose HIV is stable. The University of Brighton coproduced this process with EATG ensuring findings were systematically analysed and embedded in the app design process.
Lessons learned: Community-generated ideas are fundamental to producing interventions that work and have a purpose that is clear and relevant to intended users. The methods used enabled ideas from PLWH to be embedded in the platform design, or else recorded within a schedule for ongoing platform development. Data security and ensuring shared decision making at local clinic-community level were significant concerns. Community education resources on understanding data security were co-produced and a guide to ''opportunities for local codesign'' has supported community-clinic dialogue on digital health. Recognising patient access to data as an information right was identified as a key mechanism of empowerment.
Conclusions/Next steps: Community empowerment in digital health is not only individual self-management but inclusion in design processes and in ongoing decision-making on product development, commercialisation and sustainability. Balancing expectations against realisable technical goals is achievable through sustained dialogue. Research designs can generate and reinforce relationships and access to decision-making spaces and enable health policy making to be both empowering and inclusive.