The expertise of patients and the additional insights that they can bring to medical publications is increasingly being recognised, with the role of patients and patient advocacy groups among the updates included in the Good Publication Practice (GPP) 2022 guidelines. Following her participation at the 2023 International Society for Medical Publication Professionals (ISMPP) EU meeting, The Publication Plan spoke with Catherine Skobe, Publications Innovative Solutions Lead at Pfizer, to get her thoughts on how to increase engagement with patients throughout the publication process and on other areas for innovation in medical communications.
You’ve been involved in a range of initiatives surrounding patient involvement and the broader theme of inclusivity in medical publications. Could you start by sharing a little about your background and how you came to be interested and involved in these aspects of medical publishing?
I’d like to start by thanking The Publication Plan for the invitation to share my experiences in our field of scientific publications. I began my career in a hospital lab with the patient at the forefront of my work. Over the 20 years I’ve been working in scientific publications, the patient has always been top-of-mind, but how that intersection occurs has evolved. Layering in my experience in public health is where my pursuit in inclusivity stems from, relating to both scientific communications and to who can and who should be involved. Bringing in voices from those who are impacted by a disease is vital to understanding their needs, fulfilling those needs, and delivering well-researched information that enables them, their caregivers, and their healthcare providers to make more informed decisions.
“Bringing in voices from those who are impacted by a disease … is vital to delivering well-researched information.”
At the ISMPP EU 2023 meeting, you talked about Pfizer’s Patient Collaborative Board and its purpose to engage patients as collaborators and partners in medical publishing. Could you tell us how the idea for the board came about and how it builds on Pfizer’s existing approach to patient engagement?
As we began exploring the development of plain language summaries (PLS), I felt it was important that we hear from an audience (eg, patients/patient advocates) we intended to target to fully understand their needs. In 2020, we began with outreach to Pfizer’s in-house Patient Advocacy team to identify patient advocates for an Advisory Board meeting. We also received recommendations from identified Advisory Board attendees. It was important to us to have representation across various therapy areas as well as geography, gender, and ethnicity. During this initial Advisory Board meeting, we discussed the end-to-end publication process and learned a lot about their preferences related to publications. As part of the post-meeting survey, we discovered the attendees found the meeting as rewarding as we did. At that point, we decided to establish an ongoing board to continue the conversation. Changing the name of the board to Collaborative Board was a critical move to ensure all members are equally accountable for deliverables.
“It was important to us to have representation across various therapy areas as well as geography, gender, and ethnicity.”
What’s been the response to the board so far, both from internal stakeholders at Pfizer and from external collaborators including the patients and clinicians with whom you work? What have been the most notable impacts since setting up the board?
Our Collaborative Board is comprised of patient advocates who are eager to share their expertise and provide guidance on what resonates with their communities. To date, the members of the Collaborative Board have helped develop our guidance and resource materials for working with patient authors. In addition, they have shared their voices in our effort to increase open access publishing by participating in webinars and producing video bytes that encourage our internal authors to strongly consider journals that offer open access options. Their involvement and leadership lend credibility to our initiatives with a patient-centric focus.
During ISMPP EU, you mentioned having a 3-year plan for the future development of the board. How do you see its scope evolving? Where are the opportunities to increase patient involvement in medical publications and what are the barriers preventing it – whether based on your own experience or considering the wider medical publishing landscape?
We spent the latter part of 2022 and early 2023 developing the rules of engagement, creating a mission statement, defining our purpose, and preparing a multi-year plan. There is still much progress to be made in scientific publications as far as education for both pharma companies engaging with patients and patients who want to be involved in the end-to-end process. Raising awareness, internal and external to Pfizer, is an important first step in imparting how important it is to engage patients in the process. We also need to understand the formats that resonate with patients, where they go to get their information (ie, discoverability), and which journals and congresses are patient oriented.
A key barrier is the need for peer reviewed PLS and a journal ‘home’ for them. There is a level of trust that comes with both that’s not currently as widespread as it needs to be. Involving patients as authors and as peer reviewers represents a move away from convention but is clearly an opportunity to effect positive change. By tapping into patient advocacy organizations and combined with proper training, journal publishers could transform their existing models and provide a trusted resource for all seeking information. Ultimately, this effort could improve health literacy, which, in turn, could impact patient outcomes.
“Ultimately, [involving patients as authors and peer reviewers] could improve health literacy, which, in turn, could impact patient outcomes.”
More generally, it seems like we’re seeing more consistency within recent industry guidance and recommendations and journal editorial policies regarding when and how patients should be involved in medical publishing, with the GPP 2022 update as an example. Do you think that’s the case? Are there areas where the guidance could be clearer or more consistent?
GPP 2022 provided an excellent foundation for patient involvement in medical publishing. It was exciting to finally see guidance written that includes this audience, particularly as they are mentioned in the Principles to Support Inclusivity section. Engaging patients at the outset through Steering Committees and Working Groups sets them up to ensure International Committee of Medical Journal Editors (ICMJE) authorship criteria are being met. GPP 2022 gives many great examples of how patients and patient advocates can be involved in publications. Acknowledging that patients/patient advocates can provide a unique perspective and meaningful insights to enrich the data is a move in the right direction for medical publications. For full disclosure, I was a reviewer of GPP 2022.
“Acknowledging that patients/patient advocates can provide a unique perspective and meaningful insights to enrich the data is a move in the right direction for medical publications.”
Switching tracks slightly, you also spoke at ISMPP EU about a recently developed process at Pfizer to use the independent open access repository, Figshare, as a platform to disseminate peer reviewed PLS for manuscripts. Could you tell our readers a little more about this project? What were the pros and cons of using an independent platform like Figshare compared to a company-hosted platform?
We began exploring use cases for Figshare a few years back in 2017–18. It was our work in PLS that became the justification for creating the Pfizer Figshare platform. As we began to develop PLS in tandem with manuscripts, we discovered not all journals have the ability to host PLS on their platforms. Figshare became the solution we decided to pursue. Due to its flexibility, we are also able to provide a repository for supplemental journal materials, enhanced publication content, and eventually a home for Green open access articles. One of the best features of Figshare is its ability to capture metrics. As of early April 2023, we’ve reached close to 10,000 views. However, discoverability of this information remains a hurdle. The Digital Object Identifiers (DOIs) from the Figshare site are shared with the journal to direct readers to the additional content on Figshare, but that is the extent to which the content is disseminated.
We didn’t pursue a company-hosted platform because Figshare already existed and met our needs. This allowed us to quickly implement our idea without the need to build a site. Developing our own site wasn’t on our radar when the need arose.
GPP 2022 contains advice on industry use of social media platforms, and in the UK we recently saw The Prescription Medicines Code of Practice Authority (PMCPA) launch its guidance on social media use for pharmaceutical companies. Do you think there’s a need for similar industry guidance on the use of independently hosted repositories and similar online platforms to enable pharmaceutical companies to use them as a means of data dissemination?
Industry guidance related to social media use, specifically related to publication content, would be extremely useful. We know there is a lot of scientific conversation being held on social media platforms. Being able to share scientific information accurately, in a safe, dare I say regulated manner, could help combat some of the misinformation that is being propagated on social media. In 2017, Sara Rouhi (now with PLOS) and I co-founded ISMPP’s Social Media and Web-based Metrics Working Group. We’ve been waiting since then for guidance on how to safely communicate on social media. Social media platforms remain a bit of a ‘Wild West’, and I believe there’s a need to apply some rigor to at least some areas of conversation when led by certain users.
“Industry guidance related to social media use, specifically related to publication content, would be extremely useful.”
Finally, and thinking more generally about innovation in the medical communications and publishing industry, of the projects that you’ve been involved in, which have you found the most rewarding, whether in terms of their impact or perhaps taking a creative or alternative approach? Are there further opportunities for innovation in patient engagement and involvement or in other aspects of medical communications?
What a fantastic question. The most rewarding project I’ve led was the design and build of our publications management system called Aurora. It was a multi-year project that encouraged blue sky thinking. Aurora launched just a year ago and we continue to evolve her functionality at an unprecedented pace. The ideas on our roadmap could carry us out several years to get to what we ultimately want to have in our publications ecosystem. One of the most compelling features to me is the inclusion of alternative metric data to help us understand how the public is engaging with our research at an article and a journal level specific to Pfizer’s performance. Monitoring engagement is intended to provide a feedback loop to the publication teams to inform them of gaps and successes in communication. Ultimately, we can use these data to make better informed target journal selections for future publications, with a goal of driving down timelines and getting our data into the hands of healthcare professionals and patients faster.
Specific to patient engagement, we will continue to work with our Collaborative Board to understand their needs, measure our performance in open access publishing and patient authorship where patients are impacted, and drive future growth. In addition to PLS, involving patients in enhanced publication content formats is an area we should be exploring. To meet their needs and to improve health literacy, we need to consider providing information in other formats beyond the print publication. Above all, it is important that we engage patients in this dialogue to innovate in meaningful ways.
“In addition to PLS, involving patients in enhanced publication content formats is an area we should be exploring.”
Catherine Skobe, MPH, MT(ASCP), is Publications Innovative Solutions Lead at Pfizer and can be contacted at email@example.com or via LinkedIn. The views expressed here are those of the interviewee and do not necessarily reflect those of their employer.