Translating Cochrane Reviews to lay people through the web: the IN-DEEP project

Oral
2013 Québec City
Colombo C1, Hill S2, Filippini G3, Mosconi P1, Synnot A4, Summers M5, Osborne R6, Hawkins M6, Shapland S7, Confalonieri P8, Traversa S9, Baroni I9
1IRCCS -Istituto di Ricerche Farmacologiche Mario Negri, Italy
2Consumers and Communication Review Group, Centre for Health Communication and Participation, Australian Institute for Primary Care and Ageing, La Trobe University, Melbourne, Australia
3Cochrane Multiple Sclerosis and Rare Diseases of the Central NervousUnit of Neuroepidemiology, Fondazione IRCCS Istituto Neurologico, C. Besta, Milano, Italy
4Centre for Health Communication and Participation, Australian Institute for Primary Care and Ageing, La Trobe University, Melbourne, Australia
5Centre for Health Communication and Participation, Australian Institute for Primary Care and Ageing, La Trobe University; The Nerve Centre, Melbourne, Australia
6Public Health Innovation, Population Health Strategic Research Centre, School of Health and Social Development, Deakin University, Melbourne, Australia
7MS Australia, Perth, Australia
8U.O. Neurologia IV - Centro Sclerosi Multipla, Fondazione Istituto Neurologico ‘Carlo Besta’, Milano
9Italian MS Society, Genova, Italy

Background:

The IN-DEEP project, Integrating and deriving evidence, experiences and preferences: Developing research-based health information applicable to decision making and self-management by people with multiple sclerosis (PwMS), is a collaboration between research teams in Australia and Italy, undertaking two parallel projects. The aim is to make high-quality evidence accessible and meaningful to PwMS and their families.

Objectives:

To discuss the implications of our project findings for the provision of evidence-based information to consumers.

Methods:

The Australian and Italian teams each conducted a mixed-method study; drawing upon the information needs of PwMS to create a website that presented Cochrane Reviews (CR) of MS treatments. Extensive formal and informal user testing with consumers and other stakeholders was undertaken during development. The websites went live in 2012 with an online evaluation survey.

Results:

Due the iterative nature of the projects and differing information needs, the Australian and Italian websites took different approaches, but both were strongly endorsed by consumers. The Italian website as a first topic covered a CR on the effects of recombinant interferons for MS with additional methodological information. The Australian website included a number of different CRs. Lessons learnt include the importance of understanding consumer needs, the complexity of being faithful to the volume/quality of the evidence and to say it clearly, and effective strategies to involve lay people in the selection of treatment topics and in the production and dissemination of evidence-based information.

Conclusions:

Preparing accessible summaries of evidence for consumers identifies potential improvements for Cochrane Reviews, eg the importance of Summary of Findings tables, but also challenges of providing the full range of information which people need to manage their health. Working in partnership with consumer organisations will aid this process. Funding: Fondazione Italiana Sclerosi Multipla (Italian arm); Multiple Sclerosis Research Australia, Multiple Sclerosis Australia ACT/NSW/VIC (Australian arm).
PDF
the IN-DEEP project_abs_2013.pdf