Our thoughts are now turning to the big question of how to ensure that our Expert Report and its recommendations will have maximum impact following its publication in October this year. We recognise that we will need a three-pronged approach to Whitehall, Parliament and the media to publicise our recommendations and influence both policy and funding. We are also mentally dividing up the campaign into three phases – the run-up to the report, the events linked directly to its publication and finally, the follow-up with policy makers.
We report elsewhere on the website of recent meetings of the All-Party Parliamentary Group on Autism and the newly-formed Parliamentary Commission on Autism. Our involvement with these bodies and our current relationships with autism charities and other bodies will be extremely important parts of our campaign but we recognise the need for help with the heavy lifting of making contacts and setting up meetings. Consequently we are very pleased to announce that the Director of The Bridge Group (www.thebridgegroup.org.uk), Nik Miller, will be supporting us in the coming months leading up to our next Strategy Board meeting in April. In addition to making contacts with the civil service, politicians and the media, The Bridge Group will aid us in the search for a public affairs organisation to carry the campaign from May this year to the conclusion of the project in December 2017.
Work is progressing well at the London School of Economics and Political Science as described below and we are accelerating our efforts to ensure that all our Experts are consulted over the next few months to ensure that our Report is based on the best possible opinion.
Finally, I am pleased to announce a new addition to the Autistic Advisory Panel, Dr Yo Dunn (www.consultyo.com) who is an expert in the legal framework governing adult social care and a well-known and respected speaker, trainer and advocate on autism.
The economic case for interventions for people with autism
Progress report – January 2016
We are continuing to conduct rapid literature reviews on the effectiveness and cost-effectiveness of interventions in the autism spectrum disorders (ASD) area for both children and adults. In particular, we are continuing to look for evidence on: multidisciplinary diagnostic assessment, intensive early interventions, cognitive-behavioural therapy, social skills interventions, vocational interventions, assistive technologies, and interventions that support parents and other carers. We are now adding new areas to our search strategy, looking for evidence on awareness/anti-stigma campaign, positive-behavioural support, speech and language therapy and occupational therapy. Searches are conducted in specialised databases and websites of key organisations.
We are organising the evidence into tables to summarise key information: name of the intervention/approach, country(ies) where evaluation has been conducted, who the intervention is for (e.g. type of ASD diagnosis, level of learning disability, age group), description of the intervention itself, setting (e.g. school, health clinic, at home), components of the intervention (e.g. different therapy types), evidence on effectiveness, evidence on cost-effectiveness, and information on costs of delivery. This information is then underpinning our discussions with experts and also helping us to select interventions for which we will examine the economic case.
We are starting to organise the evidence in two key areas (intensive early interventions, cognitive-behavioural therapy) into draft summaries that will later become our report on those interventions and also support the writing of academic papers.
We are also continuing to search for datasets from previous evaluations (e.g. effectiveness trials or observational studies) that we may be able to use for interventions for which we cannot find (directly available) economic evidence. Those data will be used in simulation modelling or to examine economic questions in other ways, and it might even be possible to conduct new analyses of the primary datasets in some cases.
We are also continuing to explore ethical issues (broadly defined) in the ASD area and their economic implications. The identification of ethical issues could help us select the interventions for which we will examine the economic case, the design of the economic models, and the interpretation of results.
We are starting to draft a manuscript to report the findings from our exploration of the practical and conceptual challenges in conducting economic evaluation in the autism area, and that will also contribute to the design of our empirical economic models. Over 20 interviews have been conducted with various stakeholders in the autism area (researchers, clinicians, NGOs, policy makers, people with autism and their carers) to better understand issues related to the opportunities and challenges in performing and using economic evaluation in the area (e.g. societal values on which the economic case is built, capturing the attention of decision makers).
We are continuing to consult with a number of experts to find out about research currently underway, to understand the relevance and significance of the preliminary findings of our rapid literature reviews, to explore the relevance of emerging interventions, and (later) to identify some of the parameters needed for our own analyses.
Martin Knapp and Valentina Iemmi are leading and conducting much of the work, based in the Personal Social Services Research Unit at the LSE. Margaret Perkins (Research Officer in PSSRU), Anna Rupert (Research Assistant and speech and language therapist), and Dylan Watts (volunteer and carer) are currently assisting on the evidence review. Jeroen Luyten (Fellow in Health Economics and Health Policy in the Department of Social Policy at LSE) is assisting on ethical and related issues.