(This blog post was corrected on the 29th of September 2017)
This Sunday, October 1, 2017, we launch the first-ever REFLECT event, a forum in patient-oriented suicide prevention research. Our aim is to produce a best-practices guide for researchers seeking collaborators among the service-user population, and we have very high hopes for this conference, but already, we know that it will be imperfect.
Perfection is a troubling thing. We want it, but we know that we will never have it. We will strive for it, knowing we will fail, and yet it remains the goal.
In the case of REFLECT 2017, there are two major pieces that are already, to my mind, in need of repair. They were brought to my attention on August 14th by two Twitter users, @unsuicide and @couragesings, who posted comments on the Hatching Hub Twitter page. This post concerns the first of the two recommendations, with the second to be addressed in our wrap-up blog post coming next week.
@unsuicide’s comment had to do with a very important initiative, the “Patients Included” charter, which I describe here. They pointed out that REFLECT was not a “Patients Included” conference, with @couragesings asking if we would consider certifying future events according to the charter’s principles. We did. And we will.
The “Patients Included” charter is a vision that our team shares. And I think it is a perfect example of the kind of organizing that is needed right now: a clear statement of expectations, to serve as a base-line if collaborative scholarship between patients and physicians is to proceed. It illustrates some of the excellent work being done by patient advocates, as it does the need to publicize such work. It’s our hope that a best practices guide in patient-oriented suicide research, to come out of this year’s REFLECT conference, will serve as our contribution to these efforts.
If you haven’t heard of the “Patients Included” charter, I strongly recommend you visit this website (https://patientsincluded.org/). It is an initiative that was inspired by the experiences of Lucien Engelen of the REshape center, who was struck by a fundamental problem in research when attending a medical technology conference. In his words,
“When I was presenting at medical and technology conferences around the world people used to talk about what the patient wants, or what the doctor wants, without a patient, doctor or nurse being in the room. This astonished me, and a real page turner for me was a conference in Dubai, where all the major telecom companies in the world were present. Everyone was talking about mHealth, how huge it would become, and how many people would be using it, and thereby earning many billions of dollars.
When it was my turn to deliver my keynote, I asked the audience ‘How many patients are present here?’. Not one, it appeared.
That there should be so much talk about what patients need and want without them being present prompted me to take action.
I decided to no longer present nor visit conferences without patients being present on the stage, or as members of the organising committee, or offering patients bursaries to attend and waiving the entrance fee. During the following year, I continued to push my message and encouraged conferences that took action to use the Patients Included logo which I devised. The following year, I stopped accepting speaking requests if the meetings did not meet the Patients Included criteria.”[i]
To become a certified Patients Included conference involves signing a charter committing to five objectives:
1. Patients or caregivers with experience relevant to the conference’s central theme actively participate in the design and planning of the event, including the selection of themes, topics and speakers.2. Patients or caregivers with experience of the issues addressed by the event participate in its delivery, and appear in its physical audience.3. Travel and accommodation expenses for patients or carers participating in the advertised programme are paid in full, in advance. Scholarships are provided by the conference organisers to allow patients or carers affected by the relevant issues to attend as delegates.4. The disability requirements of participants are accommodated. All applicable sessions, breakouts, ancillary meetings, and other programme elements are open to patient delegates.5. Access for virtual participants is facilitated, with free streaming video provided online wherever possible.[i]
Patients Included conferences are identified by a self-certification process, providing conference organizers with a means of demonstrating their commitment to the above-stated principles. This involves committing to, and publicly signing the charter.
Happily, REFLECT 2017 already meets three out of the five objectives, with the signal exceptions of clauses three and five. At every stage of planning and development we have included collaborators and consultants with lived experience of suicide; patients and caregivers will be presenting, and participating as audience members. Bursaries were provided to allow patients and carers to attend as delegates, and disability requirements of participants have been given explicit consideration, with the aim of maximizing access to the event (Correction: To clarify, we were not able to provide travel bursaries for attendees this year. The bursaries provided only covered the costs of registration. A full discussion of this priority, and our intentions for REFLECT 2018, will appear in next week's blog post). We have discussed at length how we could best meet the fifth objective, but due to concerns about confidentiality, have limited access for virtual participants this time round. We will, however, be video recording the presentations, and making them available on our Youtube channel after the conference is finished.
REFLECT 2018 will be a Patients Included conference. We will be surveying participants attending this year to determine how we can best handle online streaming, recording and issues of consent, and will be making access for virtual participants a major component of planning for our event’s next iteration. In making us aware of this important initiative, I want to extend a big thank you to @unsuicide and @couragesings for their bravery and their advocacy.
[i] Engelen, Lucien. (Based on a Blog-Post from 15 February 2012) The Origins of Patients Included. Patients Included Charters. Retrieved September 27, 2017. From https://patientsincluded.org/
[ii] Patients Included. (May 2015) Conferences: What is the Purpose of the Patients Included Conference Charter? Patients Included Charters. Retrieved September 27, 2017. From https://patientsincluded.org/conferences/