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In a recent interview<\/a> in The Publication Plan<\/a>, patient advocate and patient research partner, Simon Stones, shared his thoughts on how to involve patients in medical publishing. Following on from Simon\u2019s insightful interview, we now hear about patient involvement in medical publishing from the perspective of Dawn Lobban, Senior Scientific Lead at Alligent<\/a> Europe, Envision Pharma.<\/p>\n In your experience, how often are patients involved with medical publications and what does their role most commonly look like?<\/strong><\/p>\n \u201cRecognition of the value of patient engagement throughout the drug development lifecycle to ensure effective and relevant medications is growing. Within medical publications, patients can and are providing valuable input at a number of key stages including:<\/p>\n In reality, patient input into any of these stages is still relatively low. However, interest in improving this situation is increasing, with the conversation progressing from the \u2018why\u2019 to the \u2018how\u2019. In particular, we are seeing more patients involved in the generation and review of publication plain language summaries for which they are one of a number of potential audiences. This increase is facilitated by the development of evidence-based, co-created, and free guidance<\/a> for plain language summaries, which highlights the importance of patient review.\u201d<\/p>\n Is there an area of medical publishing in which the patient voice is particularly lacking? What can be done to rectify this?<\/strong><\/p>\n \u201cAs patients are increasingly involved in the design of clinical trials, the potential for some of them to go on and fulfil International Committee of Medical Journal Editors<\/a> (ICJME) authorship criteria<\/a> is also increasing. How often such patient representatives are actually even considered to be authors on trial-related publications is not clear. We hope that such invitations will be made more proactively and frequently in the years ahead. The ICMJE has explicitly stated that the public has a legitimate interest in journal content and has no objections to patient authorship.<\/p>\n Further work is needed to ensure that, where relevant, patients are given the opportunity to author publications. A recent systematic review<\/a> of patient involvement in publications, co-authored with patients, identified that patient involvement brings benefits to:<\/p>\n However, for this to happen key stakeholders need to work together to consider the patient as a potential author from the outset, ensuring that they, and their co-authors, fully understand their role and the value that the patient voice can bring. With a number of key influencers encouraging patient authorship, including the Patient-Centered Outcomes Research Institute<\/a> (PCORI), Patient Focused Medicines Development<\/a> (PFMD) and medical journals such as The BMJ, this is likely to become more commonplace for relevant publications. Another major, but addressable, gap for patient involvement is in authoring \u2018reporting guideline\u2019 publications (such as the Consolidated Standards of Reporting Trials<\/a> [CONSORT], the Preferred Reporting Items for Systematic Reviews and Meta-Analyses<\/a> [PRISMA], and the Strengthening the Reporting of Observational Studies in Epidemiology<\/a> [STROBE]). We have shown<\/a> that patients (and publication professionals) have largely been excluded from these authorship groups.\u201d<\/p>\n Is it difficult to identify patient authors? What is the best way to go about doing this and what can medical publications professionals do to support and encourage the involvement of patient authors?<\/strong><\/p>\n \u201cTo facilitate patient authorship, a potential opportunity needs to be identified at an early stage and key stakeholders need to collaborate to ensure appropriate patient selection, training and contribution. Potential patient authors may include patient advocates involved in optimising a clinical trial design, or patient experts with a research question. Whatever their background, they need to have the capacity and capability to author the publication.<\/p>\n Based on our systematic review on how to enhance the benefits and reduce the risks associated with patient authorship, medical publication professions can facilitate patient authorship in a number of ways, including:<\/p>\n How commonly do journals include a patient review in addition to traditional peer reviews as part of their editorial processes? How can this shape the final published article?<\/strong><\/p>\n \u201cSince the introduction of patient editors over 20 years ago, The BMJ has led the way in patient engagement in publishing. Establishment of patient review of medical publications, alongside the traditional peer review, aims to provide broader insights into the impact of living with illness. Given the increased relevance of the content and the access to broader communities provided by patient reviewers, other journals are now also embracing similar models and including patient reviewers as part of their editorial processes.\u201d<\/p>\n Do you feel that more should be done by any other group (for example, industry, researchers, journals, or patients themselves) to increase the extent to which patients are involved in medical publications?<\/strong><\/p>\n \u201cPatient involvement in medical publications is associated with a number of potential benefits, but further work is needed by all key stakeholders to demonstrate exactly what these benefits are and to ensure that best practice guidance facilitates them:<\/p>\n Collectively, we all need to ensure that as our experience of patient engagement in medical publication grows, we commit to assessing and publishing relevant data. Only by growing the current body of evidence will we be able to clearly demonstrate the value that patient input can bring to medical publications.\u201d<\/p>\n Do you expect the next version of the Good Publication Practice (GPP) Guidelines to include recommendations on patient involvement? What would you like to see included in the guidelines regarding involving patients?<\/strong><\/p>\n \u201cGiven the growth in interest and execution of patient engagement activities across the drug development lifecycle, it is vital that the patient voice, with its important insights, is not lost from the resulting medical publications.<\/p>\n With a Steering Committee already established, revisions to the GPP guidelines are already underway. Given the amount of interest already demonstrated (via #GPP4<\/a> on Twitter) regarding the role of the patient, my hope and expectation is that GPP4 will indeed provide further guidance on the optimal engagement of patients in all aspects of medical publications.<\/p>\n I would encourage everyone with an interest to contribute to this conversation with an open-mind and genuine excitement regarding the opportunity to work with patients to advance medical publications in order to facilitate shared decision-making.\u201d<\/p>\n Dawn Lobban is Senior Scientific Lead at Alligent<\/a> Europe, Envision Pharma. You can contact Dawn via dawn.lobban@envisionpharmagroup.com.<\/p>\n \u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2013<\/p>\n With thanks to our sponsors, Aspire Scientific Ltd<\/a> and NetworkPharma Ltd<\/a><\/p>\n <\/strong><\/p>\n","protected":false},"excerpt":{"rendered":" Dawn Lobban, Senior Scientific Lead at Alligent Europe, Envision Pharma shares her experience of involving patients in medical publishing.<\/p>\n","protected":false},"author":1,"featured_media":6296,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"advanced_seo_description":"","jetpack_seo_html_title":"","jetpack_seo_noindex":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"Patient involvement in medical publishing: insights from a publication professional @eDawnlobban #medcomms #ISMPP #EMWA ","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2},"jetpack_publicize_connection_overrides":[],"_wpas_customize_per_network":false},"categories":[164971,343162568,343162384],"tags":[343162489,343162532,343162497],"class_list":["post-6285","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-authorship","category-interview","category-patient-centricity","tag-patient-involvement","tag-patient-review","tag-patient-authors","post-has-thumbnail"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/i0.wp.com\/thepublicationplan.com\/wp-content\/uploads\/2020\/01\/Dawn-Lobban_Thumbnail.jpg?fit=290%2C197&ssl=1","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5Yk5l-1Dn","jetpack_likes_enabled":true,"jetpack-related-posts":[],"amp_enabled":true,"_links":{"self":[{"href":"https:\/\/thepublicationplan.com\/wp-json\/wp\/v2\/posts\/6285","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/thepublicationplan.com\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/thepublicationplan.com\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/thepublicationplan.com\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/thepublicationplan.com\/wp-json\/wp\/v2\/comments?post=6285"}],"version-history":[{"count":5,"href":"https:\/\/thepublicationplan.com\/wp-json\/wp\/v2\/posts\/6285\/revisions"}],"predecessor-version":[{"id":6297,"href":"https:\/\/thepublicationplan.com\/wp-json\/wp\/v2\/posts\/6285\/revisions\/6297"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/thepublicationplan.com\/wp-json\/wp\/v2\/media\/6296"}],"wp:attachment":[{"href":"https:\/\/thepublicationplan.com\/wp-json\/wp\/v2\/media?parent=6285"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/thepublicationplan.com\/wp-json\/wp\/v2\/categories?post=6285"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/thepublicationplan.com\/wp-json\/wp\/v2\/tags?post=6285"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}\n
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\u201cTo facilitate patient authorship, a potential opportunity needs to be identified at an early stage and key stakeholders need to collaborate to ensure appropriate patient selection, training and contribution.\u201d<\/h4>\n
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\u201cEstablishment of patient review of medical publications, alongside the traditional peer review, aims to provide broader insights into the impact of living with illness.\u201d<\/h4>\n
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\u201cCollectively, we all need to ensure that as our experience of patient engagement in medical publication grows, we commit to assessing and publishing relevant data.\u201d<\/h4>\n
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