Patient Participation at Conferences

[Annette McKinnon]

When I mentioned this at the Steering Committee meeting today some members were interested the exchange. This is from a discussion on the Society for Participatory Medicine.

Below is a response to this comment

"I get regular email invitations to a host of different kinds of healthcare and medical conferences. I used to simply discard most of those emails, but I have a new approach I want to share.

I click on the link to the conference details and look for evidence of patient participation in planning or presentation. In the great majority, there is no evidence of a patient voice. In these circumstances I use the 'contact us' form and send the following short message:

Thank you for the email suggesting I attend this meeting. I am one of a large and rapidly growing group of clinicians and patient-advocates who will not even consider attending a conference that does not include a significant patient voice among presenters and panelists. Looking at the information about your conference, it is clear that you see patients as a consumable to be exploited, not as collaborators in their health or healthcare. I have no interest in programs like yours. Peter Elias, MD

Here's the reply:

"I think that if someone were to take this route, they should be really careful, especially in making inferences, and should also remember that:

1. As all health professionals are also patients, the terms are not mutually exclusive. So, a conference that has 3,000 delegates probably has about 3,000 patients.

2. Invited speakers are usually chosen because of their track-record in writing or speaking on relevant topics at conferences. Unknown doctors who don't publish and who don't present at conferences rarely get invited to speak at conferences; the same applies to patients. The same applies to any professional conference. I use roads and buildings every day, and yet I have never been an invited speaker at a civil engineering conference. It's not really surprising, given that I have never written or presented on any topic related to civil engineering, and my being a road and building user does not automatically qualify me as a speaker.

3. Apart from invited speakers, any person is entitled to submit an abstract for a presentation. Abstracts are accepted or rejected on a range of criteria such as relevance to topic, quality of writing, etc. I've not heard of an abstract rejection because the person was a patient. If patients do not submit, then, like anyone else, they won't be heard. Without a track-record, though, this might be difficult if the conference is overwhelmed with submissions, but it can be overcome by teaming up with someone who is established - just as many new researchers begin their careers by teaming up with established researchers.

4. A particular difficulty is that most medical conferences want presentations based on solid research. Research based on a study population of n=1 has to be well presented and demonstrate that it is an extremely unusual or illustrative case, and then the presenter will be expected to show clearly how the lessons learned from this case have broader applicability. If a patient wishes to speak only about themselves, they are presenting (expectedly) biased research where n=1. Without great polishing or something very unusual, their work would fall under personal anecdotes; personal anecdotes are usually at the bottom of the pile.

5. Most people who attend conferences have to fund themselves or receive (usually only partial) funding from professional institutions. But to receive even partial funding from one's institution, the conference has to be related to one's course of research. Unfortunately, any private individual, patient or other, is going to find attending conferences expensive.

With all that said, you might be pleased to know that this years' Association for Medical Education in Europe (AMEE) conference (Basel, Switzerland, August) will include a 1.5 hour symposium on the e-patient. Two of the four speakers will be Dave de Bronkart and Elizabeth Rankin. Because of costs and logistics, their participation will be via two-way video/audio feed. That symposium will be live-streamed for anyone who wishes to register for online access (fees have not yet been announced, but last year they were GBP100 for the conference). A few weeks after the conference, the recordings of the sessions are usually made freely and publicly available.

So, when invited, perhaps a compromise might be to accept the invitation, and then present something from a patient's perspective, or team up with another patient and present together. "