Background As more people live longer with chronic conditions, such as arthritis and rheumatism, it is essential that they become involved in healthcare to help improve the patient's experience, identify patient priorities, reduce burden on services, and advance research [1,2]. There is growing awareness of the benefits of patient and public involvement (PPI) across healthcare, for example co-producing research, on ethics panels, developing guidelines and influencing health policy [3–5].
Patients and carers may not be aware of the different ways they can be involved or how to make involvement effective. Health professionals and policy makers can experience difficulties in engaging or accessing people, and providing suitable training.
Objectives The European Patient Ambassador Programme (EPAP; www.EPAPonline.eu) has been developed to enable and empower patients to represent themselves and others in six key areas: reliable health information; public awareness; treatment and care; research and development; healthy policy, and the media.
The European Lung Foundation (ELF) developed the free online course with the help of patients, patient organisations, and professionals with expertise in each area. They aimed to create a programme relevant to anyone across Europe with any condition and an interest in influencing healthcare.
Methods Initial evaluation of the data was completed in January 2014. Organisations and individuals were invited to complete the programme, with feedback received via surveys before and after completing the course. Focus groups with patient organisations and patients with a range of conditions were held across Europe. The data was analysed using SPSS, and thematic analysis.
Results At the time of evaluation, there were 251 registered users. Sixty-one of these users (24%) had completed all six modules. People with experience of over 90 different conditions had registered (including 5% with arthritis and/or rheumatism).
After completing the programme 80% feel they understand how decisions about healthcare are made, and feel confident to interact with professionals, policy makers and the media (87%). Over 82% of respondents found modules 1-5 “interesting” and “useful”.
Conclusions EPAP is meeting its aim to enable and empower patients to seek involvement opportunities and ensure that their experience helps shape healthcare.
ELF plan to work with partners across Europe to ensure EPAP is accessible to everyone. Introductory videos will be developed in all European countries, and full translations will be carried out where there is in-country interest. A full German translation will be available from September 2014.
Fletcher M, Are patients shaping healthcare across Europe? Breathe 2013; 9: 333-334.
Richards T. Tessa Richards: the rise and reach of expert patients. British Medical Journal Group Blogs. http://bit.ly/1fbKFCm. Date last updated: Jan 17 2014. Date last accessed: Jan 31 2014.
Fitch N. 9 reasons why you need to include patients in your research projects. http://bit.ly/1n6DWPG. Date last updated: February 19 2013. Date last accessed: January 31 2014.
Evans DH, Bacon RJ, Greer E, Stagg AM, Turton P. 'Calling executives and clinicians to account': user involvement in commissioning cancer services. Health Expectations. 2013. [Epub]
Thompson J, Bissell P, Cooper CL, Armitage CJ, Barber R. Exploring the impact of patient and public involvement in a cancer research setting. Qualitative Health Research. 2014; 24(1): 46-54.
Acknowledgements Thanks to NIHR (National Institute for Health Research) CLAHRC (Collaboration for Leadership in Applied Health Research and Care) for Leeds, York, Bradford for their collaboration throughout the project, and for the contribution of Neil Betteridge (EULAR), among others.
Disclosure of Interest None declared
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