The individual projects that Open Pharma champions contribute to a wider paradigm shift in the way healthcare information is produced, published and accessed. During this time for reflection at the start of a new year, we consider the significance of our 2024 projects in the global context, particularly their alignment with the HIFA–WHO commitment to global access to reliable healthcare information.
Universal access to healthcare information
Imagine a world in which every person has access to reliable healthcare information, regardless of where they live or their socioeconomic status. This is the vision of Healthcare Information For All (HIFA), a global initiative dedicated to ensuring that everyone has the information they need to protect their health and the health of others.
In 2022, HIFA entered into official relations with the World Health Organization (WHO); together, they agreed a collaborative plan to fulfil the WHO’s constitutional mandate to extend “the benefits of medical, psychological and related knowledge” to everyone.
To this end, HIFA conducted a global consultation for WHO in 2024 to assess stakeholder views on the importance of reliable healthcare information and what should be done to improve its availability and use.1 The consultation involved over 2400 respondents from 135 countries and reported overwhelming agreement that access to reliable healthcare information is crucial. Respondents called for WHO to champion the goal of universal access to reliable healthcare information and to help develop a global strategy towards achieving this goal.
The collaboration between HIFA and WHO is a powerful force for change. Together, they are working to bridge the information gap that exists in many parts of the world. By promoting universal access to healthcare information, they aim to empower individuals and communities to make informed decisions, ultimately leading to better health outcomes globally.
The role of Open Pharma
A commitment to universal access motivates much of the work of Open Pharma and our Member and Supporter organizations. Our activities, which promote the accessibility, readability, discoverability and transparency of healthcare information, are driven by the same principles as those of the HIFA–WHO collaboration.
Accessibility
Throughout 2024, Open Pharma worked to engineer meaningful change in the way pharma-sponsored research is communicated. One of our primary initiatives was to increase open access (OA) to research outputs.
After developing our OA dashboard in 2023, in 2024, we published a manuscript (as a preprint) explaining the development process behind the dashboard and reporting benchmark OA publication rates for the pharma industry and research-intensive academic institutions.2 In the future, we hope that the dashboard will be used by pharma companies and publishers alike to identify and address barriers limiting the uptake of OA.
One barrier that likely limits optimal selection of OA licences by authors is the lack of true understanding about the options available. To begin addressing this need, we published an article titled Demystifying Creative Commons licenses for industry-funded research in the April 2024 edition of The MAP Newsletter. The article was so well received that we were invited to host a follow-up webinar on OA licences for the ISMPP University during International Open Access Week in October 2024.
Through our efforts to benchmark the OA landscape and educate authors, we aimed to support researchers, healthcare professionals, and the public to access and benefit from the latest advancements in medical science.
Readability and discoverability
Access to information is only meaningful if the information can be found and understood by those who want to read it. Access without understanding limits the power of health information to support individuals and communities to make informed decisions. To this end, Open Pharma is also dedicated to promoting the publication of easy-to-find plain language summaries (PLS).
In September 2024, we published the results of a survey we conducted to capture publisher perspectives on PLS. The survey revealed opportunities for journals to do more to support the discoverable publication of PLS; while some journals offered PLS, many did not because of a perceived lack of reader demand.3 Despite these challenges, the journals that did offer PLS believed that they helped to increase and diversify the readership of their scholarly journals.
Building on this initial research, we conducted a second survey in 2024 to explore how PLS are found and used by healthcare professionals. The results of this survey were presented in a poster at the 2025 European Meeting of the International Society for Medical Publication Professionals (ISMPP).
We believe that including easy-to-find PLS in all medical research publications can make complex medical information more understandable for non-specialists, including healthcare professionals, patients and the public. As Joana Osório (Communications Team Leader at Oxford PharmaGenesis and Project Lead of Open Pharma) explains, “PLS can help anyone to find, understand and use research information. They are part of a healthy and inclusive communication ecosystem.” Increasing the publication and discoverability of PLS is a crucial step towards making global access to healthcare information valuable to everyone.
Transparency
In a world increasingly plagued by misinformation, trust in healthcare research is vital now more than ever. We believe that transparent research practices and ethical data sharing play an important role in fostering trust in biomedical research and healthcare information.
The results of our data sharing survey, presented at the 2024 Annual Meeting of ISMPP,4 made it clear that, despite commitments to responsible patient-level data sharing, there are a number of challenges when trying to comply with journal data sharing requirements for pharma-funded publications.
Recognizing an opportunity to affect positive change, Open Pharma Supporter Taylor & Francis initiated an STM Open Research Committee project to create best practice guidance clarifying journal medical and health sciences data sharing requirements. We hope that clear and consistent data sharing requirements will make it easier for sponsors of medical research to share data while protecting patient confidentiality and intellectual property rights. The STM Open Research Committee guidelines will be released later in 2025.
The role of individuals
Of course, it is not only organizations like Open Pharma, HIFA and the WHO that can engineer positive change in the communication of health information. In September 2024, Open Pharma Co-founder Chris Winchester (CEO of Oxford PharmaGenesis) had the honour of awarding Professor Eric Topol with the Friends of the National Library of Medicine’s (FNLM’s) Donald AB Lindberg Distinguished Health Communications Award for his personal, outstanding contributions to trusted health information.
As the Executive Vice-President of the non-profit Scripps Research and Founder and Director of the Scripps Research Translational Institute, Professor Topol has made complex biomedical information more understandable and accessible to the public.
Looking ahead: a year of progress and positive change
Moving into 2025, we at Open Pharma remain committed to our mission of making pharma-funded research open and accessible to all. We will continue to build on our successes, collaborate with global partners and advocate for policies that support universal access to healthcare information.
For Open Pharma Members and Supporters, our 2025 projects offer further opportunities to engineer meaningful change. For more information about our ongoing projects – including the Request OA project (a joint venture with the Sustainable Medicines Partnership) and the PLS of publications playbook – please contact the Oxford PharmaGenesis team.
As exemplified by Professor Topol, individual contributions can also lead to tangible improvements in the communication of and access to healthcare information. We invite our followers to join us in supporting efforts towards achieving universal access to healthcare information. Consider endorsing our position statement on OA, advocating for open science policies within your organization, or simply signing up to our newsletter. Together, we can make a meaningful difference to the lives of people around the world.
Happy New Year from all of us at Open Pharma!
References
- HIFA. Universal access to reliable healthcare information: a global consultation. 2024. Available from: https://www.hifa.org/sites/default/files/articles/HIFA-WHO_report_final.pdf. (Accessed 9 January 2025).
- Rees T, Philippon V, Liew A et al. Benchmarking open access publication rates for the pharmaceutical industry and research-intensive academic institutions. bioRxiv: 2024.09.14.613042 [Preprint]. 2024. Available from: https://www.biorxiv.org/content/10.1101/2024.09.14.613042v1.full (Accessed 15 January 2025).
- Baróniková S, Rosenberg A, Winchester C, et al. Publisher perspectives on plain language summaries of scientific publications: an Open Pharma survey. Medical Writing 2024;33:54–61.
- Osório J, McIlwaine P, Bhatia R et al. Unraveling the story behind challenges with journal data sharing requirements: an Open Pharma survey [poster]. Presented at the 20th Annual Meeting of the International Society for Medical Publication Professionals, 29 April–1 May 2024, Washington, DC, USA.
Sophie Adams is a Medical Writer at Oxford PharmaGenesis.
Sophie Nobes is a Senior Medical Writer at Oxford PharmaGenesis and Co-lead for the Open Pharma plain language summary and discoverability working group.
