KEY TAKEAWAYS

• From January 2025, The BMJ is offering £50 or a 12-month online subscription to a BMJ journal for patients and members of the public who review an article.
• The BMJ hopes the policy will help to expand and diversify participation from its patient and public reviewers.

Patients, advocates, and public reviewers play an important role in the reporting of medical research by offering their lived experiences and perspectives. Starting from January 2025, The BMJ is complementing the 12-month BMJ online subscription given to all reviewers, adding £50 or a 12-month online subscription to any BMJ journal for patient and public reviewers.

The BMJ introduced patient and public reviews in 2014 and have accumulated over 2,600 patient and public reviews across various article types. These help to evaluate:

• the relevance and importance of research questions
• the appropriateness of outcome measures
• how patient and public involvement is reported.

The new BMJ policy aligns with National Institute for Health and Care Research (NIHR) guidelines on payments for public involvement in research and aims to:

• compensate the time and effort of patient and public reviewers
• expand and diversify patient reviewer participation.

Expanding representation in patient and public reviews

While The BMJ has over 1,000 engaged patient and public reviewers from over 20 countries, most reviews in the past decade were conducted by women based in the UK and US. The experiences of patient reviewers for The BMJ are positive, and their feedback has helped develop further guidance and training. Feedback from current reviewers and an international patient and public advisory panel also underpins the latest change in compensation.

The BMJ hopes that remuneration will diversify participation in reviews and increase representation.

The BMJ hopes that remuneration will diversify participation in reviews and increase representation across:

• geographic locations
• ethnicities
• genders
• areas of lived patient experiences.

How will this change the future of peer review?

The BMJ announcement acknowledges the value of patient perspectives in medical research, sitting alongside other initiatives to amplify patient engagement in scientific publications and address barriers to participation. However, broader discussions persist around whether clinical peer reviewers should be compensated and how to sustainably improve the peer review process while maintaining quality and integrity. The BMJ plan to monitor the impact of the new policy – we look forward to reading their updates.

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Recently, there has been an increased awareness of the importance of ensuring that medical research is accessible to patients and of the benefits of patient involvement in developing medical communications. Following her presentation at the 2022 European Meeting of the International Society for Medical Publication Professionals (ISMPP), The Publication Plan spoke to Laura Dormer, Editorial Director at Future Science Group, for a publisher’s perspective on developing journal content with and for patients.

 Future Science Group (FSG) publishes plain language summaries of publications (PLSPs), which are standalone, full-length summaries of original articles. How popular is this article type in terms of the number of submissions received and readership?

“When we published our first PLSP article in Future Oncology in 2020, our hope was that this new article type would help address a need to make the results of medical research more accessible to a broader audience. However, even we have been surprised at the enthusiasm with which the PLSPs have been received! At the time of writing, we have published 23 PLSPs, and have many more currently in progress for publication this year. Understandably, we have had (and continue to have) many conversations with people who are interested in publishing plain language content, but who are unsure how to go about this (including how to do so compliantly). However, these conversations are definitely now bearing fruit, and we are receiving new submissions on a weekly basis, which is great to see. PLSPs have also been well received by readers, and are among some of the most-read content in the issues in which they have appeared. The most read PLSP to date, on a pneumonia treatment, has received over 9,000 downloads in the first few weeks since publication.”

“PLSPs are among some of the most-read content in the issues in which they have appeared.”

A PLSP could cover an article published in a journal from another publisher. Have you encountered any issues with other publishers viewing the PLSP as a duplicate publication? Have you experienced any issues related to copyright when reproducing data in a PLSP?

“As part of our research when setting up our process for PLSPs, we looked into the International Committee of Medical Journal Editors (ICMJE) requirements for acceptable secondary publications, to ensure our articles met these conditions. There are 6 specific conditions that the ICMJE stipulate, and we provide guidance on how authors can meet these standards.

One of the ICMJE recommendations is to obtain approval from the publishers of the original publication; we therefore ask authors to contact the publishers to obtain this and recommend they do so as early in the development of the PLSP as possible. A further requirement of ICMJE is to inform readers of the original publication, and PLSPs always include a clear link back to the original paper, both in the article itself and on PubMed, for example. Not only does this fulfil the requirement, but it also drives interested readers back to the original publication if they want to learn about the study in more detail, so is valuable to the original publishers too.

So far, we have received very limited push back from the publishers approached, which is great; and generally, any conversations have been around explaining exactly what the PLSPs entail, as they are such a new offering.”

How important do you think it is to publish some form of plain language summary (PLS) for scientific papers and do you think they should be available for all publications? Which types of article do you think are most suitable as a basis for a full-length PLSP?

“I am very much in favour of publishing some form of PLS alongside research results wherever possible. The aim of plain language content is to provide access to the results of medical research to anyone who is interested in reading it. In many cases this is the very people (patients and patient carers) who have been directly involved in that research or who will be directly impacted by the results being presented. It only seems right to me to make this information accessible to as many people as possible.

But it’s not just patients and other members of the public that are finding PLS useful; another goal of our PLS content is to provide a resource to clinicians, nurses, and other healthcare professionals and decision makers. There is so much research published each year, and clear, easily digestible content is extremely helpful when it comes to keeping up to date with the latest findings. PLS content is also a valuable resource to aid patient–physician dialogue, and with patient centricity such an important goal for healthcare, PLS can really help drive this.

“It may not be realistic to publish PLS for every piece of research due to lack of resources; but I think these should be included wherever possible and at least for Phase III research results.”

It may not be realistic to publish PLS for every piece of research due to lack of resources; but I think these should be included wherever possible and at least for all Phase III research results. Certain pharmaceutical companies are really leading the way in terms of PLS content, and Ipsen recently committed to publishing, as a minimum, a 250-word PLS alongside all company-sponsored journal publications from human studies.

It is also important to remember that there are many different types of PLS: short-form text PLS (similar in length to a traditional article abstract), graphical abstracts, infographics, and PLS as supplementary materials, along with standalone PLSPs. The most appropriate type of PLS to develop for an article will depend on many things, from the time and resources available to develop it, through to the intended audience of the work.”

“The most appropriate type of PLS to develop for an article will depend on many things, from the time and resources available to develop it, through to the intended audience of the work.”

From your experience, what are the main difficulties faced when writing a PLS? Can you give any tips on how to convey complex information accurately without being patronising? Have any examples been particularly successful or well received by patients?  

“Writing in plain language is a real skill, and is a lot harder to do well than would first appear. The authors in our journals are very used to writing in a particular style, for peer-to-peer communication, and switching to appropriately pitched plain language can be challenging. In my experience, authors often still include language that is too technical (rather than the other extreme of appearing patronising)!

In terms of tips, new guidance is available (and more is on the way) to help in the writing of PLS, including the Patient Focused Medicines Development (PFMD)’s how-to guide for PLS co-creation (the development of which was described in a recently published article), and the PLS toolkit from Envision Pharma Group. There are also various online tools that can be helpful, such as a readability test to find the reading level of a piece of writing. We include a list of these resources in our PLSP author guidelines, which we are continually expanding to include the great resources coming out. It can also be useful to look at the different PLS that have been published by others, and see what appeals to you as a reader. We also recommend that our authors have their first draft read by a non-specialist before submission – whether this is a colleague in another department or even a family member, it is useful to see what feedback they have.

On a personal level, I find it useful when PLS include infographic-style elements and images as much as possible, as these help me to understand and remember information. All of our PLSPs include illustrations in this style, which have received very good feedback from reviewers and readers.”

“Writing in plain language is a real skill…authors often still include language that is too technical (rather than the other extreme of appearing patronising).”

Other options offered by FSG journals include graphical abstracts, infographics, and videos. How useful are these formats to patients? They may represent a significant investment for article authors or sponsors, as well as publishers supporting these formats, so what’s the evidence that these additions increase the reach or citations of the accompanying article?

“This is a good question, and something that we and other publishers are gathering data on all the time, as more and more of this type of content is published. Some great research presented at the 2022 European Meeting of ISMPP (Winter S et al. Do plain language summaries encourage readers to access your publication? A pilot study) found that the inclusion of PLS in open access articles led to increased readership of those articles compared with similar articles without PLS.

And while research of other enhanced content (such as graphical and video abstracts) is currently scarce, initial research (such as the following presentations from the 2022 European Meeting of ISMMP: Helson R et al. Enhanced content and social media activity: a case study from ASCO 2021; Hammad M et al. The effect of accompanying publication extenders on publication metrics in sets of similar oncology papers) also suggests these types of feature potentially extend the reach of the research, including via social media channels, for which they are ideally suited.”

Some publishers involve patients as peer reviewers. What benefits do patient peer reviewers bring and when do you think their input is most relevant?

“We include patient reviewers for our PLSP articles, and their feedback has been invaluable. Their input has really helped get the level of the content right (in some cases further simplifying the information, but in some cases adding further detail from the original publication). Interestingly, we also ask patient reviewers to review PLSPs outside of their scope of expertise, as we find this also aids with the overall review of the article in ensuring that the content is understandable.

As yet, we have not involved patient reviewers for non-plain language content to any extent, but I think this is also an interesting area to explore, particularly for clinically focused papers and trial results.”

Are there currently any patient editors at FSG or plans to appoint them in the future? What are the benefits to stakeholders including publishers and patients if patients are involved as journal editors? Are there any challenges or obstacles that need to be considered?

“As part of our process of setting up the PLSP project, we established an Advisory Panel of plain language experts, including many patients. Not only have the members of the panel been extremely helpful in the peer review of our plain language content, they have also been invaluable more broadly in establishing, and continuing to evolve, our PLS publication process. For example, they have provided useful feedback on how to make the review process of PLSPs work for patient reviewers and helped us to provide appropriate guidelines for those performing a review for the first time (which differ from the guidelines we provide to scientific peer reviewers).

Although FSG doesn’t yet have patient editors on our journal Editorial Boards, I know some other publishers have taken this step (and the journal Research Involvement and Engagement has a patient Editor-in-Chief), and it’s something we definitely plan to explore at FSG, particularly for journals that are beginning to include a lot of plain language content.”

In order for patients to benefit from medical research, materials must be accessible. What are the main barriers to patients accessing information? How important is open access in disseminating data to patients?

“I think there are two things to consider in terms of accessibility – the first is open access publication, and the second is the discoverability of the content. I think it is vital for PLS to be available freely or open access, as non-specialist readers are unlikely to have access to peer-reviewed journals via an institutional subscription, for example.

“I think it is vital for PLS to be available freely or open access.”

However, in order to access this content, readers first need to be able to find it. One of the advantages of the standalone PLSP article is that it is discoverable in its own right, and isn’t hidden within an article or a supplementary materials file. We recommend PLSPs include ‘plain language summary’ within the article title, so readers searching online or on indexing sites like PubMed can find them more easily.

But even before you consider how patients access the information, you need to ensure that they are aware that PLS exist in the first place. The more that publishers include PLS, the more those patients seeking information will know to look for them, and in turn they can spread the word to fellow patients that PLS exist to help them understand medical literature. It is also important that we, as publishers, are doing all we can to make sure other types of plain language content are discoverable, for example by making sure within-article PLS are tagged appropriately so that they can be found easily on PubMed. Many publishers are also starting to launch microsites on their regular journal platforms to pull plain language content into one location for all their journals, again making it easier for readers to find.”

Have you worked on any articles that have included patient authors? What are the potential benefits and challenges involved with patients authoring peer reviewed articles for scientific journals? 

“Along with authors of the original publication, we encourage the inclusion of patient authors in PLSPs wherever possible. Patient authors can add valuable insight to publications, particularly when they have been involved in the research. Beyond PLSPs, patient authors are also starting to be involved in other article types published in FSG journals, which is great to see.

“Patient authors can add valuable insight to publications, particularly when they have been involved in the research.”

I think one of the perceived barriers for patient authorship is the ability of patients to meet authorship criteria as per the ICMJE recommendations. However, if patients are involved from the start of planning a publication, these criteria can definitely be met. Another challenge is identifying patient authors on publications, as it is not always clear from their affiliation that they are a patient. We wrote about one potential solution for this in a recent article in Research Involvement and Engagement, and this has already led to some interesting conversations – definitely an area of further discussion! It is valuable to be able to identify patient authors, so we can track whether their inclusion is increasing over time and to provide more examples of where this has been done successfully.”

Finally, what more do you think should be done to encourage patient involvement in publications?

“The fact that we are talking about this more and more is a great step, and the more patients are involved in publications, the more examples others will have to follow. I think the important thing is to keep discussing this in as many places as possible – to shout about the successes, but also discuss the challenges and share tips and resources to help successfully involve patients more and more in the future.”

Laura is Editorial Director at Future Science Group. You can contact Laura at l.dormer@future-science-group.com or via LinkedIn.

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KEY TAKEAWAYS

• 167 patients and caregivers were surveyed on 4 different plain language summary (PLS) formats: infographic or text-based with varying complexity.
• Infographic and medium-complexity text were the preferred PLS formats; oversimplified text was viewed negatively.

Results of a survey published in the Journal of Medical Internet Research have revealed that the preferred format of plain language summaries (PLSs) for patients and caregivers is infographic-based, followed by medium-complexity text-only summary.

Leia Martínez Silvagnoli and colleagues selected three peer-reviewed research articles on three chronic diseases representing different age groups:

• psoriasis (younger population)
• multiple sclerosis (middle-aged population)
• rheumatoid arthritis (older population).

The authors developed four PLSs for each article: three text-only summaries written using high-, medium-, or low-complexity wording, and one infographic. The readability and presentation of the PLSs were assessed via an online survey, which was sent to organisations representing patients and caregivers for each of the three disease states. A total of 167 patients and caregivers completed the survey, of whom approximately 90% were women and over half had a university degree.

Patients and caregivers showed a clear preference for an infographic PLS format.

Infographic was the preferred PLS format for all three articles, and medium complexity (corresponding to a reading age of 14–17 years) was the preferred readability level. Participants commented that the graphical and medium-complexity PLSs were clear, easy to understand, and included all the relevant details in a concise way. The high-complexity PLSs were marked down for excessive use of scientific jargon, whilst the low-complexity PLSs were criticised for being oversimplified and lacking key statistical data. These preferences did not change regardless of education status, but younger participants generally preferred the infographic over the text-only format.

The authors note that although their study provides key insights into the optimal format for communicating medicine-based research to a nonexpert audience, further research is needed to capture preferences for the broader patient population, including those with other illnesses and different health literacy levels. With PLSs becoming more commonplace for medical research articles, we hope that audience preferences are taken into consideration to maximise understanding.

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Recorded 4 December 2019 as a MedComms Networking webinar.
Produced by NetworkPharma.tv

In a recent interview in The Publication Plan, patient advocate and patient research partner, Simon Stones, shared his thoughts on how to involve patients in medical publishing. Following on from Simon’s insightful interview, we now hear about patient involvement in medical publishing from the perspective of Dawn Lobban, Senior Scientific Lead at Alligent Europe, Envision Pharma.

In your experience, how often are patients involved with medical publications and what does their role most commonly look like?

“Recognition 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:

• Publication planning: As members of a publication steering committee, to ensure that patients are a considered audience in the plan. We are currently working with publication professionals and patient advocacy staff from industry to implement this important innovation in publications.
• Publication generation: As contributors or authors to ensure that publications are relevant and reflect the lived experience. We, and others, have presented and published research with patient co-authors. Notably, patient authors can and should help with journal selection; they are likely to be strong advocates for open-access journals offering timely review and innovative ways to extend the reach of published research. They may be less likely to pursue unrealistic target journals and thus, could potentially reduce resubmission delays and costs.
• Publication reviewers: As part of the journal review process, to identify relevant research. As highlighted below, The BMJ has been involving patients as peer reviewers for many years.
• Publication optimisation and distribution: To broaden the audience of medical publications, for instance through the review of plain language summaries and subsequent online sharing. We have involved patient peer reviewers to help prepare hundreds of plain language summaries to date and their feedback has been critical to the sensitivity, relevance, and readability of these documents. We have also shown how proactive patients can be in sharing plain language summaries of publications via social media (eg, via Twitter), which reinforces just how interested patients can be in raising awareness of, and sharing, the latest research.

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 ‘why’ to the ‘how’. 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 for plain language summaries, which highlights the importance of patient review.”

Is there an area of medical publishing in which the patient voice is particularly lacking? What can be done to rectify this?

“As 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 (ICJME) authorship criteria 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.

Further work is needed to ensure that, where relevant, patients are given the opportunity to author publications. A recent systematic review of patient involvement in publications, co-authored with patients, identified that patient involvement brings benefits to:

• Publications (eg, real-world relevance, broader dissemination)
• Patient authors (eg, respected for input, new skills)
• Non-patient authors (eg, access to new funding, new research topics).

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 (PCORI), Patient Focused Medicines Development (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 ‘reporting guideline’ publications (such as the Consolidated Standards of Reporting Trials [CONSORT], the Preferred Reporting Items for Systematic Reviews and Meta-Analyses [PRISMA], and the Strengthening the Reporting of Observational Studies in Epidemiology [STROBE]). We have shown that patients (and publication professionals) have largely been excluded from these authorship groups.”

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?

“To 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.”

“To 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.

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:

• Raising the question at an early stage to ensure potential patient authorship is considered at the outset to enable all ICJME criteria to be subsequently fulfilled.
• Ensuring patient authors understand their role and responsibilities as an author.
• Engaging patients as authors according to demonstrated best practice.
• Being aware of available guidance for optimal patient engagement, while remaining open and keen to learn from every opportunity for patient interaction.
• Encouraging the development of ‘companion publications’ to original publications with patient authors. These companion publications would follow the Guidance for Reporting Involvement of Patients and the Public (GRIPP)2 reporting guidelines and document how patients were involved as authors and the effects of patient authorship.”

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?

“Establishment of patient review of medical publications, alongside the traditional peer review, aims to provide broader insights into the impact of living with illness.”

“Since 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.”

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?

“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.”

“Patient 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:

• Industry colleagues need to be open to change, address internal barriers, educate colleagues, and adapt current standard operating procedures to embrace patient engagement in medical publications.
• Publishers need to agree and implement best practices to provide some clarity and consistency to assist the reader.
  • Plain language summaries should be optimised in terms of format and length based on best practice, location, and online searchability e.g. through PubMed.
  • Patient authors should be easily identifiable and the use of patient reviewers should be increased.
• Publishers and editors can also follow the lead of The BMJ, which requires authors to include a ‘Patient and Public Involvement Statement’ in their research publications. A number of journals have now implemented this transparency initiative, including BMJ Open, BJOG, Research Involvement and Engagement, and several leading titles in The BMJ’s portfolio of specialist journals.
• Medical publication professionals need to embrace patients as key authors, providing guidance, practical assistance and training as needed, to enable them to fulfil their important role.
• Finally, patients themselves with an interest in being involved in medical publications need to ensure that they are fully aware of the implications, undergo necessary training and commit the time needed to provide valuable input.

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.”

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?

“Given 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.

With a Steering Committee already established, revisions to the GPP guidelines are already underway. Given the amount of interest already demonstrated (via #GPP4 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.

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.”

Dawn Lobban is Senior Scientific Lead at Alligent Europe, Envision Pharma. You can contact Dawn via dawn.lobban@envisionpharmagroup.com.

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With thanks to our sponsors, Aspire Scientific Ltd and NetworkPharma Ltd

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!”

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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 simon@simonstones.com, or by finding him on social media @SimonRStones.

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With thanks to our sponsors, Aspire Scientific Ltd and NetworkPharma Ltd

Patient and public involvement in clinical research is attracting increased attention, not least because it has the potential to increase the quality and value of research. The BMJ and Research Involvement and Engagement (RIE) journals have adopted innovative strategies aimed at involving patients and the public in their publishing models. These include the incorporation of patient and public review into their peer review processes. Last year, The BMJ and RIE invited these reviewers to participate in a survey to evaluate their experiences. The results were published in BMJ Open in September and are being reviewed by the journals to enhance the guidance and support they provide to their reviewers.

Overall, 224 invited reviewers responded to the survey. Of 157 who had previously reviewed, 127 (81%) would recommend being a reviewer to others and an overwhelming majority (92%) thought that patient and public review should be adopted by more journals. Reviewers described being motivated to review by the opportunity to include the patient voice in research, to ensure the literature is understandable and relevant, and by the intellectual challenge. Only a small number of reviewers (16/224, 7%) were concerned about performing open review (in which reviewers are asked to sign their reviews, and these are seen by the authors of the paper and potentially the readers of the article). When asked how their experience of being a patient reviewer could be improved, respondents were keen for more resources, training and support through the peer review process.

RIE have already acted on feedback from their patient and wider reviewer community and have developed reviewer guidelines, including links to training resources and example reviews. The BMJ are also striving to make their processes “as straightforward and smooth as possible” and provide reviewers with guidance as well as training packages. The BMJ and RIE hope that the survey results may also be of benefit to other journals thinking of initiating patient and public review and note that “further research is planned to identify where and how patient and public reviewers add value to the peer review process.”

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Summary by Louise Niven DPhil, CMPP from Aspire Scientific

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With thanks to our sponsors, Aspire Scientific Ltd and NetworkPharma Ltd