British Medical Journal BMJ is 'Patients Included'.

Below an interview on this occasion by Trendition.org (in photo Lucien Engelen, Fiona Godlee, Melvin Samsom and Tessa Richards)

Today, the BMJ, formerly the British Medical Journal, received a special “Patients Included” certificate to acknowledge and encourage their focus on the involvement of patients in the field of medical publishing .

The certificate was awarded by prof. dr. Melvin Samson, chairman of the Board of the Radboud University Medical Center in Nijmegen (who will be the new CEO of the Karlolinska University Hospital in Sweden as of 1 October 2014).

The concept of the “patients included act” was developed by Lucien Engelen of the REshape Center from the of Radboudumc in 2010. “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. ‘And are there any doctors? ’. Yes, just one, a doctor of dentistry who it appeared, had walked into the wrong conference-room by mistake”. That there should be so much talk about what patients and doctors 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 organizing committee, or offering patients bursaries to attend and waving 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 actually stopped accepting speaking requests if the meetings did not meet the “Patients Included” criteria.

The Patients Included logo is not an official certification (although trademarked). Any conference can use the logo if they involve patients in their conference, as outlined. The great thing is that we - the REshape Center – do not determine whether or not they comply, the audience does. If a conference uses the Patients Included logo, but fails to meet the Patients Included criteria, and next week for instance Kaiser Permanente's Parkinsons event they face heavy criticism; as some conferences have already found out…

The list of conferences where patients are actually on the stage or are otherwise involved in the programme is growing worldwide. Including Doctors 2.0 & You in Paris, Medicine 2.0 at Harvard, Futuremed in San Diego, Medicine-X at Stanford, World Parkinsons Disease conference, Cleveland Clinics, personalized health care summit and Patients in power in Athens in 2012 and a conference of the Dutch Health Inspectorate June 2013 with over a 600 people where 100 of them were patients and many more conferences.

Since then, the Patients Included initiative has received a new twist. When Engelen together with e-PatientDave (Dave deBronkart), e-patient and spokesman for patient engagement, were invited to speak the IHI/BMJ Quality and Safety in Healthcare forum in London in 2013, both decided to try and ?”infect” the conference’ with the ‘Patients Included’ virus. Engelen got in touch with Fiona Godlee, editor of the BMJ, a leading international general medical journal, with a mission to increase patient participation in medical publishing. A very special move for such a traditional magazine as BMJ. Engelen “I challenged Fiona If you can come up with a bold vision on how to include patients in medical publishing - and then act on it, and come to Nijmegen (location of the REshape Center) and share that publicly, we could award your journal with a Patients Included certificate; the first ever awarded to a medical journal."

The journal has been advocating for partnership with patients for many years. In 1999 it published a special issue on the topic and emphasised the importance of share decision-making in healthcare. A year later it produced an issue lead and largely written by patients. It has long had a patient editor , and had a growing a collection of articles on shared decision making, and produced a regular series of “patient journey’s“ written by patients . But last year it made a to step up its action to help advance (the much needed) “Patient revolution” in healthcare by developing a formal patient partnership strategy with a team of patient advisors.

It established its panel of patients, patient advocates and doctors last year and together with them “co-created” a new strategy which has been introduced incrementally since January 2014, and formally launched in an editorial published last week. The journals sees the journal making bold changes. These include asking authors of research papers to state whether, and if so how, patients were involved in setting the research question, selecting the outcome measures, and the design and implementation of the study . Also to state their plans for disseminating the results of the study to participants. The journal is also sending research papers to patients and has embedded it as an integral part of its peer review processes. A further, step is to require all authors of educational papers to enlist the help of patients in drawing up their articles, and document the nature of their involvement as contributors or co authors. The number of commentaries, blogs and other articles written by patients are being increased and have patients joining the journals decision making committees.

To help with their initiative, the BMJ is actively seeking patient reviewers; that is people living with a disease or acting as a representative or advocate of a patient or groups of patients. In essence, while fellow scientists and medical researchers evaluate articles on the basis of their clinical importance, originality, and validity, and particularly on whether the findings will help doctors and policy makers make better decisions, patient reviewers (see how to submit overhere) will asked to comment on whether the study addresses a question which is important to them, and whether there are missing questions and issues which are relevant to patients and caregivers. They will also be encouraged to asked questions such as can this new treatment really work in practice? or do you foresee obstacles? Do you have suggestions to the authors, to other doctors and patients that can make their paper more useful?

Badge as encouragement

Engelen: “At present globally, the BMJ is the only medical journal that has taken these steps. With opening up their plans and acting on it publicly they took a heading from which they never could have backed off again. When we saw the impressive list of things that the BMJ is doing, witnessed some of the prior meetings, plans and efforts that preceded the adoption of their new strategy we wanted to encourage this mission. The journal is well aware that its embarking on a journey, Sure its going to get criticized, and challenged, and will stumble and learn from experience.

After speaking to some of the patients involved who completely agreed with our insights on the effort BMJ has put into this, we wanted to step ahead. Encouraging them with the Patients Included Award 2014 and the badge was therefore appropriate. “For us, this is just the beginning” Engelen adds, we really would like to stimulate change in the rest of the medical publishing world too. Sure, it is not suitable for every type of research and also for many, the steps taken above may been seen as too big. But I believe, along with many others, that patients are the experts in having “lived experience“ of disease, so why not involve them? The challenge will be how to ensure that all patients have representative participation, not just a vocal minority. And its important to clearly define what is meant by co-creation of content and patient partnership; and how to evaluate its impact.

So as we move to have Patients Included, first at conferences, and now in one of the largest medical journals in the world we hope that it will bring the same added value to medical publishing as it does to conferences. The editor of the BMJ Fiona Godlee, and patient partnership editor Tessa Richards are certainly positive and see great potential. The journal is determined that patient partnership should be an integral to how it works and thinks and thinks that by “walking the talk” it will become a more effective agent for change. “People with experience of illness and navigating our complex, fragmented health systems have much to teach us,” Fiona Godlee says.

videointerview by Skipr

And the videoregistration of the Grand Rounds lecture Fiona has given at Radboudumc the night before.