How to involve patients in medical publishing: insights from a patient advocate
The push to increase patient involvement in clinical trials and medical publishing is gaining traction, and its importance is widely recognised. The Publication Plan has been talking to Simon Stones, 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), to bring you some insights into how to involve patients in medical publishing processes.
From your CV, it’s clear that you have a lot of experience as a patient advocate. Could you share a little bit about your background with our readers?
“Health is a constant part of my life – 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’s disease, psoriasis and fibromyalgia. Ironically, life with chronic conditions has always felt ‘normal’ to me – after all, I can’t remember what life was like before! In 2012, I went to The University of Manchester to study Biomedical Sciences – 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’re 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!”
What kind of medical publishing projects have you been involved in as a patient advocate?
“Working 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’ve 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 Plain Language Summaries (PLS) of Publications Toolkit with Envision Pharma Group and Patient Focused Medicines Development (PFMD). I’ve 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.”
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?
“Medical professionals are no longer the sole recipients of medical publications – with patients and carers turning to the latest news on research for hope.”
“Communicating 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 – when patients and carers are faced with deciphering fact from fiction. Medical professionals are no longer the sole recipients of medical publications – with patients and carers turning to the latest news on research for hope. However, this isn’t always helpful – especially when research is interpreted wrongly. This is why it is so important that we make research accessible for everyone.”
Are there other types of projects in which researchers, the pharmaceutical industry and publishers should involve patients more?
“If we’re talking about patients, why aren’t they involved?”
“If we’re talking about patients, why aren’t they involved? A very simple point, but one which is often overlooked. From conceptualisation of research, through to dissemination and setting new priorities – every stage of research is ultimately about patients, and their families. That’s 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, 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!”
Have you experienced any barriers to involvement? How could researchers, the pharmaceutical industry and publishers make it easier for patients to get involved?
“We’re 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”
“I’ve definitely experienced a lot of barriers over the years, even up to this day! As things stand, we’re 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:
- lengthy and difficult to interpret contracts and disclosure agreements,
- complicated payment systems,
- a lack of transparency as to how patients can request to get involved,
- and the expectation that every author has an institution to which they are affiliated.
There is also the added confusion over what constitutes ‘promotion’, which often frightens professionals into overlooking patient involvement all together. I’ve seen certain teams wrongly interpret the Association of the British Pharmaceutical Industry (ABPI) Code of Practice as well, so there’s a long way to go to ensure everyone is clear about how to involve patients in an ethical, transparent and meaningful way. Moving forward, I think the industry as a whole will need to adapt to the changing environment – where patients and carers are regarded as equals to healthcare professionals, researchers and regulators.”
Several journals now involve patient and public peer reviewers in their editorial processes, and you have reviewed manuscripts for journals including The BMJ and Research Involvement and Engagement. How could patient involvement in peer review be increased?
“What better way to assess the relevance of publications than having patients and carers be involved in their review”
“What better way to assess the relevance of publications than having patients and carers be involved in their review? Some journals distinguish ‘peer review’ from ‘lay review’, though I personally feel that they are one. This has again stemmed from a model whereby patients have been added into existing practices by professionals. If we really think about it, no academic peer reviewers are the same, and will review manuscripts according to their own views, skills and experiences, no matter how much guidance is given. The same therefore goes for patient reviewers, who simply have different views, skills and experiences to academic reviewers! I certainly see change on the horizon with regards to peer review, where a more open, transparent and inclusive process is followed for people with various types of expertise to be involved in reviewing and recommending how best to communicate research. In doing so, everyone needs to be mindful that expectations need to be discussed from the outset, recognising that patients and carers may have different needs, goals and ambitions to professionals.”
How else could funders, researchers, the pharmaceutical industry and publishers get more patients involved in each stage of the publication of medical research?
“Training and support should be offered to patient advocates”
“There’s a need for patients to be involved at every stage of the publication of medical research – but for that to happen, patients rightly need to be involved in the actual processes too – whether that be:
- conceptualising research questions,
- designing study protocols,
- reporting findings,
- communicating with fellow patients,
- or increasing public trust and transparency with research.
Firstly, training and support should be offered to patient advocates involved in these processes, so that they can complete their roles to the best of their abilities, should they wish to access such resources. Secondly, we must value the contributions of patient advocates – beyond an acknowledgement in the paper. This always begins with open and honest communication from the outset, discussing authorship, commitment, expectations and finances. The latter is a greatly debated topic, particularly among patient advocates who are often expected to work without being paid. Slowly, this is changing, and patient advocates are beginning to be recognised in the same way as freelance writers and editors are. Would we expect writers, regulators and chief executives to give up hours and hours of their time, in a professional capacity, in kindness? It’s always a difficult conversation to initiate, but one that needs raising, both by patients and publishing professionals.”
Finally, looking ahead – what do you think the future holds for patient involvement in medical publishing?
“Patients and carers won’t be recognised as mere recipients of healthcare; rather, as active partners in the grand scheme of research”
“I see journals evolving to have patients and carers involved as true equals – from editorial board level down to reviewer and author level. Patients and carers won’t be recognised as mere recipients of healthcare; rather, as active partners in the grand scheme of research – equal to researchers, healthcare professionals and other professionals within industry. I also see publishing evolving beyond the journal article, into plain language summaries, visual summaries, and more contemporary forms of communication. It isn’t good enough to expect people to come and find research findings – we must think creatively about how we can take research findings out into relevant communities, whether they be patient social media groups, medical societies, or healthcare regulators. At the same time, I expect we will see Patient Opinion Leaders appearing across the map, with Chief Patient Officers leading on delivering change from the top. It’s going to be an interesting and exciting decade ahead!”
Simon R Stones BSc (Hons) MMRS AMRSB is a Patient Advocate and Consultant at Collaboro Consulting. You can contact Simon by visiting his website https://simonstones.com, emailing firstname.lastname@example.org, or by finding him on social media @SimonRStones.
With thanks to our sponsors, Aspire Scientific Ltd and NetworkPharma Ltd
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