By Seth Ginsberg, CreakyJoints Co-Founder

 

For most of the history of medicine, medical congresses have been gatherings of medical and scientific experts to exchange current information, medical updates, research findings and clinical best practices. There were opportunities for case studies, knowledge transfers, and popular examples for how to deal with those hard-to-treat patients. New data from studies, insight from papers, and abstracts – lots and lots of abstracts – helped informed the doctor or healthcare provider.

 

Today, medical congresses around the world offer all of that to attendees, and in the last few years, include one more important component: the patients themselves.

 

This is because many patients with chronic conditions, especially systemic, autoimmune syndromes such as Rheumatoid Arthritis, have a daily, if not hourly reminder of their disease and its limitations. Those with high disease activity or whose symptoms are not managed properly are yearning to know why, and most importantly, how to feel better. The medical congress is ‘ground zero’ for that information, so one can understand the patients’ desire to be included.

 

It is therefore very natural and very understandable for patients to want to be included in medical congresses, but how to do so in a productive and informative way is the key to success. Obviously most patients are not doctors or nurses or have any degree of medical education, so most of what is discussed at a medical congress will not make sense to the patient. That doesn’t mean that they can’t or shouldn’t be included, it just means that their inclusion has to be accommodated in thoughtful ways. The recent 2015 ACR conference coverage is an example of a thoughtful way, because it is the output from a dedicated team of doctors, researchers, scientists and other professionals, whose thoughtful review of virtually all course materials lead to the identification of what we thought would be most important to the patient and caregiver. It’s by no means an exact science, but it’s an important step toward bringing doctors and patients closer together.

 

Perhaps the most important reason why patients should be included in medical congresses is the need to help patients understand (and reinforce) their role in the research. Every poster presented at every congress is possible ONLY because of the patients’ willingness to participate in the study effort. Helping patients understand the net output of their participation – what’s learned, understood or needs be figured out – can be a huge driver for future participation and engagement by the patient. This, in turn, will unlock more clues about these conditions and hopefully lead to even more breakthroughs and discoveries.

 

Also, they (patients) deserve to know the results of the studies they were a part of, and historically, medical congresses and their abstracts, posters, and presentations, remained quarantined and off-limits to the patients.

 

Inclusion of patients in medical congresses has to be done thoughtfully, delicately and with a good dose of diplomacy. After all, the purpose and intent of a medical congress is to serve the primary audience of the doctors (and researchers). However, inclusion of patients can be done in a way to enhance the experience, improve participation and hopefully, bring the doctors and patients even closer together.

 

Deputizing the right organization(s) to do this, on behalf of their members of patients and families, ensures that delicacy is upheld. The vast majority of attendees of medical congresses should remain doctors, researchers and other medical professionals. But the patient organizations – like CreakyJoints – can play a meaningful and important role as the translators and representatives of the patients who the entire congress ultimately seeks to help.

 

How to engage patients in a realistic way – and what to expect:

 

For medical congress organizers, there are a number of ways to engage patients in conference activities. What’s most important is to do so carefully and diligently, starting off slowly and building partnerships with key organizations and relying on their involvement to integrate patients into future meetings.

 

Including notable and respected patient bloggers can also achieve this objective. It’s important to identify the right bloggers who have a track record of high standards and who will adhere to blogging guidelines – so that the integrity of the writing is as high as the science and medicine standards at the conference. This enables them (patient bloggers) to put into their own voice the experience of the congress, without worry that an ‘agenda’ or counter-productive confrontations might occur.

 

Once patient organizations are involved, and patient bloggers are integrated into the conference, there is the opportunity to create an entire patient track – specifically targeting the patient and caregiver community. This might be a culmination of the meeting’s events, a summary of the year’s findings, or an opportunity to highlight what may be important for patients and their families to know. PARE, the patient arm of EULAR, does a very good job with this and is the model for integrating patients within a medical congress. CreakyJoints is working closely with ACR to duplicate and enhance this model in the future.

 

Expect a few surprises, as with anything new. But keeping patients involved and at the center of discussions – and not just as taglines for a company – will ensure success in the long run. Changes don’t happen overnight, but thanks to technology, and the ability for people to use the Internet and social media to reach very large audiences very efficiently, there can be harmony between the medical, scientific, academic, industry and patient communities.