{"id":5913,"date":"2019-07-22T15:04:20","date_gmt":"2019-07-22T15:04:20","guid":{"rendered":"https:\/\/thepublicationplan.com\/?p=5913"},"modified":"2021-03-18T17:16:12","modified_gmt":"2021-03-18T17:16:12","slug":"how-to-involve-patients-in-medical-publishing-insights-from-a-patient-advocate","status":"publish","type":"post","link":"https:\/\/thepublicationplan.com\/2019\/07\/22\/how-to-involve-patients-in-medical-publishing-insights-from-a-patient-advocate\/","title":{"rendered":"How to involve patients in medical publishing: insights from a patient advocate"},"content":{"rendered":"

\"SimonThe push to increase patient involvement in clinical trials and medical publishing is gaining traction<\/a><\/u>, and its importance is widely recognised. The Publication Plan has been talking to Simon Stones<\/a><\/u>, an award-winning patient advocate, consultant and researcher, who was a panellist at the 2019 European Meeting of the International Society for Medical Publication Professionals (ISMPP)<\/a><\/u>, to bring you some insights into how <\/em>to involve patients in medical publishing processes.<\/p>\n

From your CV<\/a>, it\u2019s clear that you have a lot of experience as a patient advocate. Could you share a little bit about your background with our readers?<\/strong><\/p>\n

\u201cHealth is a constant part of my life \u2013 personally and professionally! My experience as a patient began at the young age of three, when I was diagnosed with a form of childhood arthritis called juvenile idiopathic arthritis, as well as joint hypermobility syndrome. As I entered my teenage years, I went on to develop Crohn\u2019s disease, psoriasis and fibromyalgia. Ironically, life with chronic conditions has always felt \u2018normal\u2019 to me \u2013 after all, I can\u2019t remember what life was like before! In 2012, I went to The University of Manchester to study Biomedical Sciences \u2013 with a view to teaching. However, this all changed when I was invited to join a national clinical studies group for paediatric rheumatology, as a patient representative. This new voluntary role was my first opportunity to be involved in bringing the voice of patients to the table, to say what really mattered. It was the first step on the road to me realising that my expertise as a patient, and subsequently as a carer for my mother, is incredibly important if we\u2019re to transform the health and wellbeing of our communities. Being involved as a patient advocate has also empowered me to be in control of managing and coordinating my health, and the health of my family too!\u201d<\/p>\n

What kind of medical publishing projects have you been involved in as a patient advocate?<\/strong><\/p>\n

\u201cWorking with my academic and clinical colleagues, I have been involved as a patient advocate and patient research partner on a variety of projects, including co-authoring journal articles, systematic reviews, conference abstracts; as well as more contemporary forms of media, such as blogs and videos. With my industry colleagues, I\u2019ve been particularly active in writing and reviewing plain language summaries of conference abstracts and manuscripts. Recently, I was involved in co-producing the Plain Language Summaries\u00a0Plain Language Summaries (PLS) of Publications Toolkit\u00a0<\/a>with Envision Pharma Group and Patient Focused Medicines Development (PFMD). I\u2019ve also had opportunities to work with industry colleagues when thinking about how best to communicate with patient and carer communities, as well as how to go about involving patients and carers in designing research.\u201d<\/p>\n

Which have you found the most rewarding? Are these the same activities that have had the greatest impact on the wider community of patients that you advocate for?<\/strong><\/p>\n

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\u201cMedical professionals are no longer the sole recipients of medical publications \u2013 with patients and carers turning to the latest news on research for hope.\u201d<\/em><\/strong><\/h4>\n<\/blockquote>\n

\u201cCommunicating the findings of research to people in an accessible way is certainly one of my highlights from being involved in medical publishing as a patient advocate. This is particularly relevant in the era of information overload \u2013 when patients and carers are faced with deciphering fact from fiction. Medical professionals are no longer the sole recipients of medical publications \u2013 with patients and carers turning to the latest news on research for hope. However, this isn\u2019t always helpful \u2013 especially when research is interpreted wrongly. This is why it is so important that we make research accessible for everyone.\u201d<\/p>\n

Are there other types of projects in which researchers, the pharmaceutical industry and publishers should involve patients more?<\/strong><\/p>\n

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\u201cIf we\u2019re talking about patients, why aren\u2019t they involved?\u201d<\/em><\/strong><\/h4>\n<\/blockquote>\n

\u201cIf we\u2019re talking about patients, why aren\u2019t they involved? A very simple point, but one which is often overlooked. From conceptualisation of research, through to dissemination and setting new priorities \u2013 every stage of research is ultimately about patients, and their families. That\u2019s why they must be involved and valued for their insights and expertise. There are so many examples of how this can be practically achieved, such as those published on SYNaPsE<\/a>, the patient engagement mapping tool. Some examples are better than others, and best practice is always the ultimate goal. But we must be pragmatic too, so any act towards breaking down historical barriers is progress. I feel there is a long way to go until patients and carers are truly involved in all stages of the research and development process, particularly in preclinical and early phase work. There are already some good examples of where patients have been involved in clinical trials, and where their influence has changed study protocols to be more inclusive and accessible to those who are ultimately going to take part!\u201d<\/p>\n

Have you experienced any barriers to involvement? How could researchers, the pharmaceutical industry and publishers make it easier for patients to get involved?<\/strong><\/p>\n

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\u201cWe\u2019re still trying to make patients and carers fit into an existing approach to medical research and publishing, rather than evolving that model into something more inclusive and reflective of the current landscape and thirst for co-production\u201d<\/em><\/strong><\/h4>\n

\"Teamwork<\/p><\/blockquote>\n

\u201cI\u2019ve definitely experienced a lot of barriers over the years, even up to this day! As things stand, we\u2019re still trying to make patients and carers fit into an existing approach to medical research and publishing, rather than evolving that model into something more inclusive and reflective of the current landscape and thirst for co-production. Examples include:<\/p>\n