Patients storming the gates of medical meetings

Patient opinion leader and medical journalist Andrew Schorr puts the case for pharma and event organisers to fully embrace patients as partners.

There have been times when I wanted an appointment with my doctor and I was told he was out of town at a medical conference. At the time it seemed like some mysterious, off-limits place far away where my doctor traded the secrets of his profession with old boys from hospitals around the world. I trusted he’d return with wisdom to benefit my health.

That was then, this is now, and a lot has changed. Some of it was personal. First, I became a journalist and then became interested in medical topics. Voila, I could get a press pass to attend the very same convention my doctor did. And, little by little, I began to understand the jargon. At oncology meetings, that was all about hazard ratios and p-values.

It became even more meaningful when I was diagnosed with cancer myself: chronic lymphocytic leukaemia (CLL). Now the inner sanctum of a medical convention was a pot of gold for me – the fountain of news that could give me better care right away.

Gradually, I found I wasn’t alone. Yes, I reported the news for patients – not doctors – but increasingly there were other patients who wanted to be there too. Often they came as representatives of patient organisations – advocates who were patients themselves. But then came more unaffiliated patients who just wanted to hear the news for themselves.

Today, mingling with the practising physicians and all sorts of researchers and pharma people are actual patients, who are suffering from the conditions being discussed. They don’t want to wait for their doctor to come home. And they don’t want him/her, or anyone else to filter what could be life changing or even life saving for them.

At the recent American Society of Clinical Oncology (ASCO) meeting in Chicago, the trend was in full bloom. Patients were not just hearing for themselves, they were blogging and tweeting to thousands of other patients who wished they could have been there.

And there’s more: some with iPhones were not just tweeting, but using the new free mobile app, Periscope, to broadcast live video to family, friends, and other patients.

Although I couldn’t attend myself, my colleagues from Patient Power were there in force. They put a renowned expert on my own affliction, CLL, Dr Nicole Lamanna from Columbia University, in front of a live video camera so that patients around the world could watch her in real time and ask her questions about the latest news.

 

“No longer is the latest medical knowledge just the property of professionals”

 

 

Patients have invaded medical conferences and it’s a great thing! No longer is the latest medical knowledge just the property of professionals, it is accessible real-time to patients living with the conditions.

There are obstacles, of course. For example, in Europe several major medical meetings prohibit patients – they say because of laws in some countries – from wandering the exhibit hall or attending educational symposia sponsored by pharma.

Not all medical societies have observed this ‘rule’. But the ones that have are getting tremendous flack from patient advocates and it puts those groups, and the pharma companies, in the position of being anything but patient centric. Since patients cannot prescribe medicines to themselves, why should they be excluded from understanding what’s new or on the horizon? I am sure the ‘Patients IN Not OUT!’ movement will eventually win out.

And why shouldn’t it? I have just returned from the eyeforpharma Patient Centric Clinical Trials Europe conference in London. With my wife Esther, I was a speaker. They wanted our points of view as a patient and caregiver. The term ‘patient centric’ featured in speech after speech. These people design and run clinical trials and they have come to the conclusion that they can’t do it right without patients involved, not as subjects, but as partners throughout the process, from the earliest stage to post marketing.

So, if you want patients to embrace the idea of participating in research, doesn’t it make sense to facilitate their day-in-day-out understanding of research, the latest research news, and the momentum behind, and huge commitment to, the research process?

As you know, the medical meetings are ground zero for where research news breaks. The societies and pharma are married to that platform. Patients do not want to miss out, and they shouldn’t.

Dear pharma, if you want to accelerate the uptake of new medicines, and seed the quick promise of clinical trials, open your arms to patients as partners with no holds barred. It may be uncomfortable, but I can tell you – in the Internet age – it’s inevitable.

About the author:

Andrew Schorr is the founder and president of Patient Power, a patient organisation that produces educational content on video for cancer patients and family members in the US and Europe. Andrew is a two-time cancer patient himself and, since 1984, has been a pioneer in communications programmes for patients. Patient Power’s editorial independent content, available through patientpower.info and patientpower.eu and many other partner and social media sites, reaches over 50,000 patients a month. The content also has been viewed more than 1.6 million times by oncology professionals on oncologytube.com.

Read more from Andrew Schorr:

Obstacles to true patient centricity in Europe