Seven steps to mapping health service provision: lessons learned from mapping services for adults with Attention-Deficit/Hyperactivity Disorder (ADHD) in the UK

BACKGROUND: ADHD affects some individuals throughout their lifespan, yet service provision for adults in the United Kingdom (UK) is patchy. Current methods for mapping health service provision are resource intensive, do not map specialist ADHD teams separately from generic mental health services, and often fail to triangulate government data with accounts from service users and clinicians. Without a national audit that maps adult ADHD provision, it is difficult to quantify current gaps in provision and make the case for change. This paper describes the development of a seven step approach to map adult ADHD service provision in the UK. METHODS: A mapping method was piloted in 2016 and run definitively in 2018. A seven step method was developed: 1. Defining the target service 2. Identifying key informants 3. Designing the survey 4. Data collection 5. Data analysis 6. Communicating findings 7. Hosting/updating the service map. Patients and members of the public (including clinicians and commissioners) were involved with design, data collection and dissemination of findings. RESULTS: Using a broad definition of adult ADHD services resulted in an inclusive list of identified services, and allowed the definition to be narrowed to National Health Service (NHS) funded specialist ADHD services at data analysis, with confidence that few relevant services would be missed. Key informants included patients, carers, a range of health workers, and commissioners. A brief online survey, written using lay terms, appeared acceptable to informants. Emails sent using national organisations’ mailing lists were the most effective way to access informants on a large scale. Adaptations to the methodology in 2018 were associated with 64% more responses (2371 vs 1446) collected in 83% less time (5 vs 30 weeks) than the pilot. The 2016 map of adult ADHD services was viewed 13,688 times in 17 weeks, indicating effective communication of findings. CONCLUSION: This seven step pragmatic method was effective for collating and communicating national service data about UK adult ADHD service provision. Patient and public involvement and engagement from partner organisations was crucial throughout. Lessons learned may be transferable to mapping service provision for other health conditions and in other locations. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s12913-019-4287-7) contains supplementary material, which is available to authorized users.