Patients at medical congresses – here to stay

Empowered patient activist Andrew Schorr says patients want immediate updates on medical progress, and musn’t be shut out from medical congresses any longer.

Whether in Europe, the US or beyond, patients living with the conditions discussed at medical meetings have been seen as interlopers. The old line has been “They can’t understand this” or “It’s illegal or inappropriate for them to hear this”. Well, guess what – patients with serious conditions want news now, and want the same service they get for general news. And why not? It is possible, after all, that news which breaks at a medical congress could help them right away or within days. Patients don’t want to wait for this kind of news to trickle down to them or be filtered or ‘spun’ by intermediaries.

 

“I took advantage of any information I could get my hands on to help improve my care and empower me as a patient”
 

 

I have the inside track on this – I have had two cases of blood cancer (CLL and myelofibrosis) and took advantage of any information I could get my hands on to help improve my care and empower me as a patient.

That’s why my own organisation, PatientPower, is broadcasting updates and ask-the-expert sessions live from the American Society of Hematology (ASH) meeting in Orlando, from 5-8 December. These are free, online, on video and where patients anywhere in the world can text, email or pop up on their webcam and ask a question in real time: interactive television for patients. This makes an end-run around the general news media, PR firms, spin doctors, or those who say patients shouldn’t know.

This is the new paradigm of the empowered patient and family member. My hope is the pharmaceutical industry will soon ‘get it’ and adapt its conversations to include digital patients through educational channels that have speed and credibility. Many leading doctors are already there and are eager to get the live exposure, just like they would on the BBC or CNN.

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:

Patients storming the gates of medical meetings