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Case notes: why more medical meetings are involving patients

Once they relied on actors or even mannequins, but more and more medical associations are involving real patients in their congress programmes and, writes Francesca Manzani, it’s helping to transform the learning experience…

 

Give patients an active role at your medical congress – as speakers, panellists or event co-designers – and, chances are, the event will never be the same again.

Patients add a completely different perspective, and the result is a programme that is more engaging, insightful and enlightening.

The fact that more medical associations are choosing to involve patients in their meetings reflects a broader shift in attitude towards healthcare – away from the traditional, paternalistic approach towards something altogether more ‘patient-focused’. This term, along with ‘person-focused’, promotes the idea of greater partnership between patient and doctor and more flexibility in healthcare provision.

At the same time, patient associations are making their voices heard in the healthcare debate, increasing awareness of chronic diseases and offering mutual support and knowledge sharing.

Working with a patient association is probably the easiest way to involve patients in your congress. Typically, they will have accrued vast knowledge of the treatments and services surrounding a particular illness and the legislation that affects patients at a national and regional level. Often, they have excellent media contacts and relationships with public health authorities, too.

That said, involving patients in congress is probably easiest when the speciality is a chronic or epidemic disease, where it is more likely that patients have developed a ‘community’ or association of their own. In any event, it is crucial that you involve patients from the start to make shared decisions. Involving patients is a sensitive matter, which must be carefully managed. Ethics and compliance rules – around sponsored content and exhibitions – must be scrupulously followed.

But despite the risks, various studies have shown that patient involvement in medical and scientific meetings can have major benefits for patient and physician alike by fostering more collaborative relationships. Patient involvement in meetings and events can help healthcare professionals better understand how to communicate effectively with patients and how to motivate them to take responsibility for their own care, by adhering to their medicine programmes for example.

Patient feedback is crucial to gauging the effectiveness of medical treatments and how they can be improved. Involving patients in meetings can contribute to a change in the culture and a more patient-centric approach. At the same time, patients will gain access to the latest research in clinical treatments, which might have a direct impact on their health. Being involved in the discussion can improve their mental wellbeing, helping them feel less alone, more respected and listened to.

HOW CAN YOU INVOLVE PATIENTS?

Logistics counsellor

It is important to meet the medical needs of any patient attending congress and ensure physical barriers are eradicated as far as reasonably possible. Patients can be invited to provide advice on the meeting itself, the venue, accommodation options, location and the cost implications. They can suggest additional facilities that might be needed: rest spaces, wheelchair-friendly elevators etc.

An additional point of view

Patients can be engaged as active audience members or to provide first-person experience on panels, in workshops or
in education programmes for healthcare professionals (focusing on soft skills training, for example). Patients can also intervene as speakers, adding a new voice to the discussion.

Event co-designers

Patients can help put together the scientific programme, identifying conference themes and proposing speakers. They can advise on the kind of activities and workshops that they feel are most relevant to their needs.

The most significant thing about patients is the most obvious thing: they are real people. Patients and their families have stories to tell, which are much more likely to attract the attention of the media than the often dry, technical press releases distributed during medical congresses and which may only be of interest to specialist publications. If you really want to raise awareness of an illness, or new treatment, involving patients in your next congress is the best way to go about it. Further to this is the fact that patients can act as great social media ambassadors, spreading information to a broad community, beyond the conference hall and professional delegates. According to some studies, conferences involving patients generate more social media posts than those without.

CASE STUDY How we did it:

The World Systemic Sclerosis Congress

In 2010 a group of specialist professors held a conference in Florence dedicated to improving the lives of those – mainly women of child-bearing age – affected by a rare and complex disease.

Systemic Sclerosis – or scleroderma – means ‘hard skin’, but the condition, which affects around 2.5 million people, can cause vascular damage, organ scarring and immune system dysfunction.

Because there is no fix-all treatment for all the symptoms, it was felt that scleroderma deserved its own congress, rather than just appearing on the agenda at various rheumatology congresses.

Patient involvement was always going to be a feature of this event.

Opening up a conversation between doctors, nurses and patients was deemed essential to advancing treatment of the disease, which has perplexed the scientific community.

The bi-annual congress was built from scratch by a working group consisting of the World Scleroderma Foundation, various European rheumatology associations,  professional congress organiser AIM Group and FESCA – the Federation of European Scleroderma Patients’ Associations.

Over the years, the presence of patients has given the congress a unique flavour and focus, and now around 250 of the 1,000 delegates that attend the event are people suffering from scleroderma.

In fact, there are two parallel meetings, one aimed primarily at doctors and one for patients, which take place at the same time and venue. Young rheumatologists, dermatologists and cardiologists who are unfamiliar with the disease really benefit from deep and open discussions with the patients

Prof. Marco Matucci Cerinic

Prof. Marco Matucci Cerinic, WSF chairman, said: “The congress has contributed significantly to the fortunes of the WSF in different ways: image, awareness, organisation, fund-raising. The WSF will be able to continue its mission thanks to these results and our hope is that our studies and research will produce a cure for scleroderma.”

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About the author: Francesca Manzani, is head of the Florence office of professional congress organiser AIM Group.