Working with stakeholders to identify evidence gaps: an example from autism




Poster session 3


Tuesday 18 September 2018 - 12:30 to 14:00

All authors in correct order:

Lorenc T1, Rodgers M1, Rees R2, Wright K1, Melton H1, Hopkins P3, Sowden A1
1 University of York, UK
2 EPPI-Centre, Social Science Research Unit, UCL Institute of Education, UK
3 Service User Representative, UK
Presenting author and contact person

Presenting author:

Theo Lorenc

Contact person:

Abstract text
Adults with autism spectrum disorder (ASD) without intellectual impairment may face challenges including social isolation, difficulties with activities of daily living, unemployment, and mental and physical health problems. Guidance in England recommends that local authorities provide ‘low-level’ support services for people with ASD.

To review the evidence on the effectiveness and implementation of support services, and to work with stakeholders to identify gaps in the evidence and make recommendations for research.

Systematic review and service mapping. The review included studies of effectiveness, cost-effectiveness or qualitative evidence on any supportive intervention or service, for any outcome other than cognitive tests. We mapped available services in England using information that is publicly available, and profiled three case studies. The project was informed by an Advisory Group including people with ASD and their carers, representatives from patient organisations, policy-makers, and people involved in delivering services. In collaboration with the Advisory Group, we developed a logic model to show the types of interventions and outcomes relevant to the delivery of supportive services and mapped the evidence to the logic model.

Thirty-seven studies were included. The majority of the evidence focused on specific skills training interventions (employment programmes and social skills training), and on proximal outcomes such as social skills. The service mapping located 128 local services, offering a wide range of types of support. The Advisory Group identified major evidence gaps around supportive interventions, such as advocacy and mentoring, and around more distal outcomes such as mental health or wellbeing.

The evidence base for adults with ASD without intellectual impairment has considerable limitations from the point of view of practice. In many areas of concern to service users, policy-makers, and practitioners, there is very little evaluation evidence. Involving service users and other stakeholders can help to guide priorities for future research.

Patient or healthcare consumer involvement:
Patients and service users were involved in the conduct of this project as stakeholders in the Advisory Group. A service user representative (Peter Hopkins) co-authored the abstract.

Relevance to patients and consumers: 

This paper provides an example of how stakeholder advisers can help to shape the conduct and dissemination of reviews. In particular, we describe how our Advisory Group helped to identify evidence gaps in a systematic review, and to show where there is a need for evidence to inform policy and practice.