Patient engagement with the <i>BJD</i> : where do we stand?
Authors: B.W.M. Arents, J. Burton
Journal: British Journal of Dermatology (2020)

In June 2019 the BJD published an editorial on patient engagement with the journal.1 In it, an overview was given on different kinds of patient engagement in the realm of medical research and all it entails, from formulating research questions at the beginning to evidence-based practice guidelines at the end. Within that whole process – or chain, if you will – there is a role for patients and for peer-reviewed medical journals. But what could be the role of patients within a medical journal? The title of the editorial was ‘Patient engagement with the BJD: why and how?’ Reading it now, it can be concluded that many of the plans that were laid out have actually been accomplished. After recruitment, selection and interviews, two Patient Associate Editors were appointed in the autumn of 2019. They have become an integral part of the editorial team and are the authors of this editorial. An often-used quote within patient engagement is: ‘We as patients do not want to be on the menu, we want to sit at the table’. Well, that is a fact now: we are sitting at the BJD’s table, so to speak. We participate in editors’ meetings, are consulted by editors on patient-related issues regularly, and were given the opportunity to present an overview of our role and activities at BJD’s Editorial Team Day. But, what has been done? Not long ago, articles in medical journals were only accessible to the medical community. Patients and patient advocates only had access to abstracts in PubMed, if available. A lot has changed for the better, with open-access journals and open-access articles within journals. Yet, not everyone is able to understand these articles. An often-heard complaint from patients in general is: ‘They are just not doing enough research on my disease’. Well, maybe it has been done, but they are not aware of it. These are the reasons why the BJD publishes plain language summaries (PLSs): concise and easy-to-understand summaries of important articles that are accessible to the general public. This way, all patients can learn about the newest research in dermatology in an accessible way. We also feel that by providing patients with this information it will instil hope where there may not have previously been any – hope that in the future their condition will be more effectively managed and maybe even brought into long-term remission. This, in turn, may also improve the mental well-being of patients, something that has been frequently overlooked within dermatology in the past when dealing with incurable long-term conditions. BJD PLSs are published online along with each issue, where a patient may not have discovered the information. The PLSs were downloaded about 30,000 times in 2019. The British Association of Dermatologists (BAD) also has a website for the general public.2 Because we thought this would be a suitable place for patients to seek information about their conditions, BJD’s PLSs can now also be found on the BAD website under ‘resources’ and searched by condition name. It is in the process of being populated with back issues. The workflow of PLSs has been also refined and streamlined. As a result, the BJD author guidelines have also been changed and authors can now submit a PLS at submission rather than being asked for it at acceptance, which can result in delays. Now that PLSs are easier to find and searchable, the next step was to approach patient organizations and make them aware that this resource of trustworthy dermatological research exists. We are in the midst of that process by contacting and informing dermatological patient organizations worldwide, including their national, supranational and global umbrella organizations. So, if things go well, the number of downloads should go up, leading to even more informed patients, which is the actual goal. From the beginning our vision was that the connection between the BJD and patients should be bidirectional. Disseminating PLSs is one aspect; the other is to include patients and their voices in BJD’s content. Therefore, the author guidelines for ‘Perspective’ articles in the correspondence section have been amended. Although it was already in there, more emphasis has been put on encouraging patients and patients’ organizations to write a ‘Perspective’ article. The feature has not been broadcast widely, so as not to ‘open the floodgates’ and then have to disappoint people. Therefore, we have started by inviting reputable patient organizations in our network with a specific request to write a ‘Perspective’ article. It was not difficult to find topics that really need a patient’s perspective in the BJD that is also essential to clinicians. As an example, articles on COVID-19 are all over the place, and that is more than justified. But an alarming drop in dermatological consultations that are not COVID-19-related has been observed, and a dermatological clinic cannot be run the same way with the now-mandatory social distancing. Virtual consultations via telephone or video can be a solution, and are on the rise. From the patients’ view, the question arises if these virtual consultations meet their needs, for example in terms feeling cared for or in shared decision-making. We do not know well enough if there is any difference in outcomes between face-to-face or virtual consultations. Time will tell, research will tell, but we need both sides of the picture. Hopefully this will be reflected in future issues of the BJD. Is there more? Sure. We would like to see patients more involved in research projects, systematic reviews and evidence-based guidelines. Ideally, this involvement should be reflected and reported accordingly in BJD’s articles, preferably in a compulsory and standardized way. But this is beyond our scope. However, why not philosophize and dream about all medical journals requiring a compulsory checklist that could be named the Preferred Reporting Of items for Patient Engagement in Research checklist (acronym: PROPER)? We are well underway as Patient Associate Editors. It was also mentioned in last year’s editorial that Patient Associate Editors should have equal status and similar responsibilities to other associate editors. We can confirm that this has been accomplished, as we have nothing but praise for how we have been fitted in. We not only have that ‘place at the table’, but we have also had the entrée and are now looking forward to the main course, as there is a lot to do and accomplish, together. We would like to thank the staff at the BJD, the British Association of Dermatologists and Wiley-Blackwell for incorporating us into the editorial team. Special thanks go to John Ingram, John Caulfield and, last-but-surely-not-least, the incredible Shehnaz Ahmed for her support and guidance on a daily basis. Bernd WM Arents: Conceptualization (equal); Writing-original draft (equal); Writing-review & editing (equal). James Burton: Conceptualization (equal); Writing-original draft (equal); Writing-review & editing (equal).