The evolving role of patient advocates at medical congresses

Organisers of medical conferences should include patient advocates on the podium and in the audience as their direct experiences of diseases and treatments can provide greater understanding, leading to improvements in drugs and care.

I want to talk about the increasing role of patient advocates at medical congresses. While I’m unfortunately not able to attend this week’s San Antonio Breast Cancer Congress (SABCS) in the US, I have had some fantastic experiences there since my first visit in 2006, as a patient advocate and breast cancer survivor myself.

In Europe,until just a few years ago, the attitude of patients and patient advocates was that they should follow their doctors’ advice without any further consultation, particularly with a cancer diagnosis. The dominant, patriarchal attitude of some doctors did not leave much ground for questions or challenging treatment proposals – and I’m not talking about 20 or 30years ago, but as recently as the turn of the 21st century, before the massive introduction of social media and mobile internet.

Technology has contributed a lot in terms of patients becoming more educated, connecting with other patients and reaching out to them to ask questions and share experiences. It’s also enabled information sharing about upcoming medical congresses – I first found out about SABCS and Alamo Breast Cancer Foundation (ABCF) online.

Much has changed since my first visit to SABCS, which was an eye-opener for me. Before that I had attended much smaller national or European cancer conferences. In 2006, I considered myself lucky to be given the chance to listen and learn from distinguished oncologists. I was amazed when a patient advocate and now good friend, Ann Fonfa, dared to stand up in a conference hall of more than 2,000 participants and ask the presenters challenging questions.

Nowadays, the participation of patients both on the floor and in the audience is central to the most successful medical conferences. There is even the PatientsIncluded conferences movement, of which SABCS is unfortunately not yet a member. There are, indeed, patient advocates in the audience, who actively attend, take notes and write reports. However, so far, it has not crossed the organiser’s mind to invite them to present. Why not

“In 2012, a patient advocate was asked to chair a session for the first time in the 35-year history of SABCS”

In 2012, a patient advocate was asked to chair a session for the first time in the 35-year history of SABCS. Susan Rafte, survivor founder of Pink Ribbons Project in Houston, moderated a panel on “Navigating the Obstacles and Risks of Survivorship” with three oncologists. Although many well-known oncologists commented on this ‘first’ at SABCS with praise for patient advocates, no-one took the next step and stated that in future, they would like to team up with patient advocates and share the floor with them, which was a shame.

Susan’s involvement was communicated across the media, but was this really so revolutionary? Surely, the natural place for patient advocates is together with their physician counterparts. Only patient advocates can present the reality of treatments and the need for translational research into medical conferences, as they have unique knowledge and expertise from living with a disease, living with a treatment or suffering because there isn’t one for them.

The mentor sessions are a part of the SABCS programme that I enjoyed very much, but I feel that the time has come to review their structure and delivery. Many advocates are in awe of being among the top physicians in oncology and there still seems to be some distance separating cancer specialists from patient advocates. Just think how the interaction between healthcare professionals and patient advocates could improve if they all sat around the same table, as we’re now seeing more in Europe?

SABCS is an excellent educational and connecting opportunity for patient advocates. It remains to be seen if it is also a great ‘participatory opportunity’ in practice.

About the author:

Kathi Apostolidis is chair DE.DI.DI.KA., Intergroup Committee for Cancer Patient Rights Advocacy/Greece and vice president of the European Cancer Patient Coalition/Belgium (ECPC). She is involved in public affairs and social media.

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