Intended for healthcare professionals

Observations Patient Partnership

Patients and healthcare conferences: what does true involvement look like?

BMJ 2015; 350 doi: https://doi.org/10.1136/bmj.h1325 (Published 10 March 2015) Cite this as: BMJ 2015;350:h1325
  1. Anya de Iongh, member, patient panel, The BMJ,
  2. Ceinwen Giles, independent consultant in field of patient experience and engagement and member, patient panel, The BMJ
  1. anya.deiongh{at}cantab.net, ceinwen.giles{at}gmail.com

In the circus of healthcare conferences how can we make patients the ringmasters and not the monkeys?

In the past decade patient involvement has gained global prominence in health policy. The Health and Social Care Act 2012 in the United Kingdom, for example, set out duties for NHS commissioners with respect to the participation of patients and the public and also reflected themes embedded in European Union legislation and draft World Health Organization legislation. The slogan “nothing about us without us” sums this up, and involvement of patients individually and collectively has expanded.

This shift has created opportunities for us, as people with experience of long term illness, to use our experience to drive improvements in the design and delivery of healthcare. This has taken place through a range of activities, from sharing our stories with healthcare professionals to working with organisations to redesign health services and taking part in healthcare events. We have often observed, however, that although “patient and public involvement” is increasingly spoken of—and opportunities for engagement have increased—there is relatively little understanding about how to do it well.

We believe that health conferences are a useful lens through which to examine the quality of patient involvement. In early 2012 Lucien Engelen created the Patients Included campaign, stating, “I will ‘NO-SHOW’ at healthcare conferences that do not add patients TO or IN their programme or invite them to be IN the audience.” This established a simple but useful framework for measuring patient involvement, but we believe that it is now time for a deeper exploration of what it means to be truly included. Conferences are basically collections of conversations, and while there is an increasing understanding of the need to involve patients in those conversations, how this happens is rarely debated.

Meaningful involvement

We understand that organising a large conference is no simple task; however, in reflecting on our experiences, we have found that the conferences with the most meaningful patient involvement have been defined by several things. These are conferences where we have been given plenty of notice when asked to speak and provided with a clear brief for our session, as well as an understanding of how it fits with the rest of the event. Our remuneration was agreed, and all arrangements ran smoothly. We were profiled in conference materials and given timely thanks. When things changed we’ve had a key contact and the changes were explained to us. By and large, our roles remained similar to what was originally asked of us, without “mission creep.” Those events have also given us the opportunity to shape the agenda for our sessions and feel that we were as integral to the session as other expert speakers.

All too often, in our experience, these elements are missing. We may appear on stage, providing organisers the opportunity to show how well they’ve involved patients, but without deeper thought we may actually be little more than puppets. Seldom, for example, are patients given the same profile in conference materials as other speakers. Our experience indicates that this is because, at least in part, conference agendas are set by professionals who then seek out a patient who can fit into a predetermined topic. While we recognise the need to recruit high profile speakers to attract delegates, there is a growing group of patients and patient activists who are experienced speakers and who have important arguments to make and interesting backgrounds to draw on. In situations in which less experienced speakers are recruited, reasonable lead-in times, coupled with relevant support to develop their talks, possibly from other patient speakers, are one way to improve this.

Ensuring the patient has influence

Patient involvement at conferences should not be limited to what happens on stage; patients are also occasionally included on organising committees. It is quite easy to say that “a patient sits on the committee” without exploring the detail of whether their inclusion actually works or has led to change. Having a patient on a steering committee is a step in the right direction but is pointless unless the patient is given the opportunity to contribute both to the way in which involvement is designed and delivered and to the themes of the conference. Truly inclusive working requires a willingness to embrace different perspectives and to put some of those contributions into action. Patient involvement at this level also requires recognition that power lies with the healthcare organisation behind the conference, as well as its funders; patients may be invited in, but it’s not into an arena in which they have influence.

The patients’ perspective on the success of involvement needs to be captured. While organisers may believe that they have done an excellent job of involving patients, that belief may not be shared by the patients. The only way this can be understood is to ask them what they think and seek to learn what could be changed.

Patient involvement at healthcare conferences may look right on the day and have ticked the right boxes, but we need to go further. The whole process needs to feel right as well. This isn’t achieved by a single task but by ensuring that the process of patient involvement is the same as it is for others involved.

Notes

Cite this as: BMJ 2015;350:h1325

Footnotes

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