![\"neil-betteridge\"](\"https:\/\/stg-blogs.bmj.com\/bmj\/files\/2016\/09\/Neil-Betteridge-300x249.jpg\")
As someone who has long championed “user” or “patient” involvement in health focused organisations\u2014whether as CEO at Arthritis Care or as vice president of EULAR (the European League Against Rheumatism) representing the patient group network in rheumatic and musculoskeletal diseases\u2014I believe that the key to success is having clarity of purpose. If you are sure of “why” you want to enable patient participation at medical meetings, you are far more likely to get the “how” right.<\/p>\n
For example, the annual EULAR congress is a major global health event\u2014almost 14 000 people attended the 2016 event in London and this is a typical number. While the majority of those attending are healthcare professionals, the number of patient representatives has increased in recent years. Moreover, feedback from lay delegates has been ever more positive as we learn how to support participation most effectively. We recognise at EULAR that quality of experience is even more important than “bums on seats,” as it is the former which creates sustainability of user involvement and helps to deliver a high quality product.<\/p>\n
To achieve this we follow two guiding principles.\u00a0Firstly, “Nothing about us without us”: patients have a right to participate in discussions about their care.<\/p>\n
Secondly, “Ask, never assume.” By involving patient groups throughout the year, we ensure that the topics of most relevance to them are included on the programme. One stream of sessions is wholly organised by PARE (People with Arthritis and Rheumatism in Europe), which means that this part of the congress is not just user focused but actually user led. Several other sessions are also jointly developed, further illustrating the close integration across stakeholders.<\/p>\n
We have found that translating principles into practice delivers quality.<\/p>\n
Out of this dialogue has arisen practical means to support meaningful participation in the meeting. For example, by<\/p>\n
\u2022 offering a subsidised registration fee for patients, many of whom are volunteers
\n\u2022 providing dedicated bursaries for PARE to enable oral presentations and posters, with the accommodation for award winners pre-checked for access
\n\u2022 offering free inclusion of a personal assistant where validated by certification
\n\u2022 optimising access at the meeting itself. For example, having a small number of wheelchairs available, as well as fold-up chairs for poster tours, and minimising the distance delegates need to walk
\n\u2022 being clear that all delegates have equal rights to attend sessions in the scientific part of the meeting
\n\u2022 ensuring that meeting rooms have accessible podiums for patient presenters and any health professionals with mobility problems
\n\u2022 having seats available at all functions, for example,\u00a0the non-commercial exhibition area, networking events, etc<\/p>\n
But the most important thing of all is communication. Ask, listen, and respond. Let people know in advance if there are possible barriers to participation. Ensure that onsite staff are trained to take access issues seriously. Patients know that the world is not perfect,\u00a0but if they encounter reasonableness, their experience will be positive.<\/p>\n
Most importantly of all, by involving patients meaningfully, your event will be the richer for mining a deep vein of expertise that\u00a0would otherwise be inaccessible.<\/p>\n
Neil Betteridge<\/strong> is international liaison officer, public affairs, for EULAR. Professionally, he runs Neil Betteridge Associates, a UK patient focused consultancy designed to support those wishing to embed patient focus into their services and activities. He is co-chair of the Chronic Pain Policy Coalition and was formerly CEO of Arthritis Care, during which time he was appointed by ministers both in the Dept of Health and Dept of Transport to act as a patient adviser to the government. You can find him on Twitter\u00a0<\/i>@Neil_Betteridge<\/em><\/a><\/p>\n Competing interests:\u00a0<\/strong>I have read and understood BMJ policy on declaration of interests and declare the\u00a0following interests:<\/p>\n Organisational financial interest: Non-financial interest: Interests of related parties: Related articles:<\/strong> As someone who has long championed “user” or “patient” involvement in health focused organisations\u2014whether as CEO at Arthritis Care or as vice president of EULAR (the European League Against Rheumatism) representing the patient group network in rheumatic and musculoskeletal diseases\u2014I believe that the key to success is having clarity of purpose. If you are sure […]<\/p>\n
\nI run my own consultancy, Neil Betteridge Associates. Over the past 36 months this company has\u00a0worked with a range of clients from the voluntary, public, and private sectors, including the NHS and\u00a0some pharmaceutical companies. These honoraria have been provided for strategic advice relating\u00a0to patient engagement and other topics relating to policy and communications. Travel expenses have\u00a0been paid at economy fare rate. Fees have not exceeded \u00a310 000 for any one piece of work. Work of\u00a0a similar nature is scheduled for the coming six months or so.<\/p>\n
\n– International liaison officer, public affairs, EULAR
\n– Co-chair, Chronic Pain Policy Coalition
\n– Patient and carer adviser, Professional Record Standards Body
\n– Patient and public voice, NHS England CRG on specialised pain services<\/p>\n
\nMy spouse, Kate Betteridge, is co-director of Neil Betteridge Associates.<\/p>\n
\nEditorial:\u00a0Co-creating health\u2014more than a dream<\/a>
\nAnalysis: \u201cNothing about us without us\u201d\u2014patient partnership in medical conferences<\/a>
\nBlog: The evidence informed patient<\/span><\/a>
\nBlog: Patient involvement in the European Respiratory Society Congress 2015-16<\/span><\/a><\/p>\n","protected":false},"excerpt":{"rendered":"