Cristin Lind and Kyle Knox discuss their experience of co-producing a conference with patients

Cristin Lind: The patient perspective

If someone had told me when I arrived at the IHI/BMJ International Forum on Quality and Safety in Healthcare (International Forum) in Paris in 2014 that I would be a member of the planning committee two years later, I don’t think I would have believed them. I am a mum of a child with special needs and I self-financed my own trip from Stockholm to co-present a poster with a doctor I had worked with.

I expected to find fellow patient and family leaders there and I scoured the programme and tweeted tentatively to identify them among the 3000 attendees. But there were only a handful there and we weren’t able to connect and plan with each other. As presenters shared their improvement projects I felt “talked about” rather than part of the conversation. The experience contrasted badly with a meeting I’d attended in 2012 (the IHI National Forum in the US). The patient engagement team at that conference had high expectations of the 30 or so patient and family leaders who had applied to be there. We were expected to ask thoughtful questions in sessions, present content, spark debate via social media, and participate in workshops. We were also invited to provide guidance on how to advance patient partnership throughout the entire conference where delegates were urged to visit a booth placed smack bang in the path of major foot traffic, with a sign overhead saying: “The patient is in.” It was exhilarating.

To enable this level of participation, the conference planners paid for our registration and travel costs. New attendees were matched with experienced patient mentors, who prepped us before arrival. Dinners, breakfasts, and resting rooms were arranged, just as they were for other sub-groups like junior doctors and people from different geographic areas. Our conference badges sported ribbons that communicated clearly that we were welcome in the room. We were there to remind all participants that healthcare was shifting from something done for patients to something done with them.

During the 2014 event in Paris, I connected with the conference organizers and offered to help them think about how to increase patient participation in their next event. I was asked to join the BMJ patient advisory panel, and its advisory board, and shortly after, the planning committee for the International Forum.

As a patient member of the International Forum’s advisory committee the work I am asked to do is the same as that asked of other members: I review proposals for sessions, suggest content and speakers, review the programme, and moderate conference sessions. Some of my work is about improving patient participation in the conference, and some of it is about co-producing a good conference. My advisory role to the forum is supported by my employer, the Stockholm County Council, for whom I work full time on patient professional partnership. If that was not the case, the forum organisers would pay for my input, as they do with other patient advisors they work with.

It’s been encouraging to see how involvement of patient and family leaders in the International Forum has increased. Last year the inclusion of patients as speakers and moderators sent a strong signal to all attendees that patients were in the room, and that they have challenging, robust innovations to share. Other important behind-the-scenes changes took place too; including asking all those who submitted proposals to to speak at the conference to explain how patients had been involved in their work and how they would share the patient perspective in their presentation.

Key success factors from my perspective are clear support from leadership and the front-line staff, increased financial resources to pilot new things, updating procedures like the submissions process to foster a change of mindset among attendees, and greater interest about what patients need and can offer.

Kyle Knox: The conference organiser’s perspective

I joined the BMJ Events content team in 2012, and my role is to work closely with our programme planning committees and specialist advisors to create event programmes that are exciting, challenging, and focus on the key questions in healthcare today. Our large events are shaped with the input of different programme groups which all contain at least one (and in some cases two) patient or family representatives.

I became involved with BMJ’s Patient Partnership work after taking over content management for the International Forum three months prior to the London event in April 2017. We considered the Patient’s Included charter, and I was involved in many exciting conversations around pushing patient involvement further than we had ever done before. Two out of four keynotes featured patient presenters and we had a special mini course facilitated by patients, with patients given free places to attend. We had patients presenting and chairing content across our main programme and evening activities, and there was reimbursement available for their travel and accommodation. It was great to see them involved across all areas of the conference for the first time.

In this year’s International Forum in Amsterdam we plan to have patient presenters included in two of our four keynotes again, but have expanded their role. As well as talking about their own experience, together with clinical co-presenters they will contribute on equal footing to the general discussion of how we should improve care. We are also including patient presenters in our science and research symposium, a course primarily targeted towards academics. We have set up a formal application process for patients to claim a limited number of complimentary passes if they are interested in contributing to discussions across the event; those selected have been chosen on the basis that they are involved in some capacity with an organisation seeking to improve healthcare quality or advocating for patients. Next year we hope to broaden our eligibility criteria and provide more complimentary passes to patients. We are keen to ensure the patients view and voice is integrated throughout the programme, not confined it to “special guest” involvement.

In my relatively short experience as a conference organiser I have witnessed some inspirational content given by patient presenters on diverse topics ranging from self care to refugee health, but I have found that getting access to presenters can often be difficult. We rely mostly on recommendations from the networks of patients advocates with whom the BMJ works. It is a requirement in our call for abstracts that potential speakers include information on how patients have been involved in the development of the presentation, yet few patients submit abstracts themselves. It seems likely that patients and families do not yet realise that we welcome submissions from them and we need to get the message out to their communities. Online registries which offer access to a community of patients who want to get involved in all aspects of healthcare, including medical meetings, may be a source for new patient voices, although the representativeness of the voices in these communities can still be questioned.

Without doubt, one of our biggest barriers to patient involvement is cost. Currently it is impossible to support travel and accommodation costs for a large number of patient and family attendees. Conferences, especially large international ones, are very expensive to run and delegate fees are often the only way to make the event sustainable. One way to offset fees is with sponsorship, but as patients are not yet seen as “a key demographic” by the organisations which sponsor conferences, attracting funding in this way is difficult. Furthermore it is not only patients who are seeking free places. We also receive appeals for funding from medical students and participants from low income countries who face similar financial barriers to attendance.

This suggests that we need to think harder about the value of including a wide range of voices, experience, demographic and geographical groups in our conferences, and how we present this value in a measurable way to sponsors and budget holders. Perhaps we should do more to ensure that patients and others who are new to attending big conferences are supported to gain the confidence and skills to participate actively and make connections with people with whom they can collaborate with on future projects. Offering support to showcase how a conference created new opportunities for patients and healthcare professionals alike could make it an attractive proposition that justifies the investment. Sharing knowledge of new ways this is being done by other conference organisers is essential.

We should also consider ways in which participation can be expanded beyond physical attendance—as suggested in the Patient’s included charter. The International Forum livestreams keynote and mainstage presentations, and these are made freely available to watch and comment on. As events are trialling exciting new ways for virtual delegates to experience the full spectrum of the meeting through video conference and app facilities we should be looking at all such opportunities to broaden participation beyond just those who can attend in person.

Joint reflections on the way forward for #PI in medical meetings

Big international conferences are like supertankers—once they are up to speed it takes a long time to change direction without running the risk of overturning the whole enterprise. We have a long way to go in making our conferences accessible and attractive to patients, but arguably the patient community have a responsibility to grasp the opportunity offered to engage with organisers seeking their input and keen to work in partnership with them.

Our experience of working together has taught us the value of regular communication and a good personal relationship between patient representatives and conference organisers. From the patient perspective, gaining insight into the world of the conference organiser and the restrictions and challenges in place has created a better understanding of where the possibilities and opportunities lie. From the conference organiser’s perspective getting a better understanding of patient’s aims and objectives has been helpful in maximising the impact of their involvement

The biggest hurdle for us both is moving from great intentions to practical solutions, and many questions remain:

1. How can we find a viable financial model to fund patient participation in the conferences?
2. How do we harness the power of aggregated knowledge from larger and representative groups of patients in addition to the innovations of entrepreneurial solo patient leaders ?
3. How do we ensure participation in conferences avoids the dreaded “tickbox” approach of patients being brought in too late or with too little preparation?
4. How do we ensure that including patients adds value and holds real potential to spur change in the culture, organisation and delivery of healthcare?

But perhaps the biggest question we need to ask as we, and others pursue the joint quest towards patient integration is clarity of purpose about who these conferences are for?

• See also: #PatientsIncluded is harder than it looks, but worth it

Cristin Lind supports partnership between patients, families and professionals for better health and care at the Stockholm County Council. She blogs about raising a child with complex needs at www.durgastoolbox.com. She is a member of the BMJ’s Advisory Board and Patient Partnership Advisory Group. Twitter: @DurgasToolbox

Kyle Knox is Content Manager for the BMJ Events team, responsible for programme design on the BMJ Masterclasses series, BMJ Careers Fair, The International Forum on Quality and Safety in Healthcare and Leaders in Healthcare.Twitter: @Kyle_KnoxBMJ

Declaration of interest: KK is a full time employee of BMJ

• We would love to know what you think about patient involvement in conferences. Please join us on 5 April 2018 at 8pm BST for a Twitter chat @bmj_latest #BMJdebate.
• The next International Forum on Quality and Safety in Healthcare takes place in Amsterdam on 2 – 4 May.

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