Dave Andrews, Meridian HealthComms; Guy Yeoman, Mallinckrodt Pharmaceuticals; Tom Grant, UCB; Catherine Skobe, Pfizer
This article is derived from a plenary session delivered at the 17th Annual Meeting of ISMPP, April 12-14, 2021.
In any relationship, whether business or personal, transparency breeds trust. Today, despite the life science industry delivering unprecedented vaccine solutions to address the Covid pandemic, mistrust remains engrained in the public persona.[i] Third parties have leveraged that doubt for their own gain, as recently witnessed with political leverage of national interest in dramatizing the drug effects and outcomes that reinforced mistrust of vaccines deemed safe and effective by the regulatory bodies.[ii],[iii] This is often compounded by the instantaneous dissemination of news via social media with a lack of accountability and understanding, all resulting in increased “noise” rather than facts.[iv], [v], [vi]
Various stakeholder groups can aid in improving public trust of science and health care. This article discusses what can be done by the Life Science Industry, Patients, Medical Communication Professionals, Agencies, and Scientific Community with the Media.
Life Science Industry – Aim for transparency to build trust
To continue to improve trust with the public, the Life Science Industry needs to become more transparent. Scientific and medical data need to be appropriately contextualized to users of medicines who may directly benefit from any advancements. Measures can be employed to enhance understanding, enrich engagement, and provide more informed choices, such as generating patient perspective data, which should ultimately result in better outcomes for patients, carers, and society-at-large. In addition, it is important to be mindful and deliberate to avoid the consequences of poor reporting and medical writing, so information is not misleading or labeled as fake news.[vii]
Equally important, published research should be barrier-free and not blocked behind a journal subscription paywall. By making research freely accessible and discoverable to all via open access publishing, ongoing and new research discoveries will have a global impact that may improve health outcomes faster than ever before.
Patients – Engagement in the clinical research spectrum
At the onset, biopharmaceutical and research funders should involve patients in shaping medical research that is meaningful, review approaches to transparency, and implement open access policies or practices. Ideally, patients should be engaged at all stages of clinical research from planning disease area strategy, developing patient-centred target product profiles, designing trials that patients want to participate in, through to patient involvement in developing publications and communication materials (which should be inclusive of patient needs and those of carers, families, and friends). Clear guidance on how to work with patients exists through collaborative initiatives, such as from the International Federation of Pharmaceutical Manufacturers & Associations (IFPMA) and the Association of the British Pharmaceutical Industry (ABPI) (both freely and publicly available). The challenge for Industry is to adopt this practice into standard business practices.
Biopharmaceutical and research funders should involve patients, when appropriate, in shaping medical research that is meaningful.
Involving patients in decision-making at the outset of clinical investigation is a giant step towards improving trust. It is imperative to allow patients to identify and shape the solutions where they want to engage. Being inclusive of the patient perspective benefits the clinical discovery process and should optimize intended outcomes in disease prevention and/or treatment. Instilling practices to include a wide range of diverse populations are essential for improving trust. By applying good health literacy practices into publications and communications, research findings will be more accessible to various patient populations in making health care decisions, thereby increasing public trust.
Working with patients and patient organizations to generate plain language summaries is one tangible route to improving knowledge and trust.[viii] However, guardrails will need to be put in place to ensure positive bias in data selection is not driving these publication formats.
Involving patients in decision-making at the outset of clinical investigation is a giant step towards improving trust.
Medical Communication Professionals – Advocate for alignment and collaboration with partners
As medical communication professionals, it is our responsibility to highlight the need for alignment and collaboration to all stakeholders internally and externally. Developing content and communications that have clarity both in themes and language can be constructed when keeping the patient as the focus. By using language that is easy-to-understand, there is less room for error or misinterpretation.
Medical communication professionals in Industry should advocate for alignment and collaboration with partners, such as journal publishers, medical communication agencies, and medical societies, to unify our collective position and create one voice that should ideally limit misinterpretation by the media. It is imperative that peer-reviewed journals uphold medical integrity and avoid biased sensationalism like some media outlets. In a recent BMJ article, there was reference to the leaking of some confidential documents via the “dark web”[ix]; the article walked that fine line of sensationalism due to its lack of corroboratory evidence. During the pandemic, there has been more opportunity for medical journals to edge towards sensationalist content, as public health has come to the forefront of news and public searches.[x] As the conduit between research and publications derived from funders, medical journal publishers have a duty to communicate responsibly and accurately; they play a critical role as an unbiased source in the communication process.
By using language that is easy-to-understand, there is less room for error or misinterpretation.
Medical Communication Agencies – Inform about opportunities
- Medical communication agencies have a vital role in informing their clients when there are opportunities to improve and clarify their research through literature searches/gap analyses, particularly when exploring alternative metrics for online exchange, interacting with external authors/investigators, and editing medical publications.
- By guiding the stakeholders they work with to be transparent and deliver clear communications, agencies can offer oversight throughout the planning and development process and provide the external recipient’s perspective.
Scientific Community and the Media – Reducing misinterpretation and misinformation
Last, but not least, there should be open cooperation with medical societies to garner cross-industry, multi-stakeholder perspectives on methods to alleviate the possibility of distributing information that could be misinterpreted. As a scientific community, we can engage by educating media journalists and the public about medical publications and their impact.
As a scientific community, we can engage with educating media journalists and the public about medical publications and their impact.
A recent example, which was highlighted during the pandemic, is the use of preprints. It would be highly beneficial to educate the media and public on the differences between preprints and peer-reviewed articles. Here is where medical societies, including the International Society for Medical Publication Professionals (ISMPP), have led the way. The Joint Position Statement between the American Medical Writers Association (AMWA), European Medical Writers Association (EMWA), and ISMPP[xi] provides guidance on how to properly consider preprints in the context of broader research and future communications. When the media use preprints as the basis of their news articles, the door to misinformation has been opened in some instances.[xii] The media must explain any limitations in terms their readers can understand since the nuances of preprints and peer-reviewed articles will most likely not be understood by their readers.
When the media use preprints as the basis of their news articles, the door to misinformation has been opened in some instances. The media must explain any limitations in terms their readers can understand.
- Working together as a unified medical communications community by building on our diverse contributions will be more impactful on affecting change and informing media sources to communicate in a fair and balanced manner.
- Advocacy throughout the process and acting as watchdogs for potential risks will combat distribution of, and protect the public from, medical misinformation and, in the end, increase public trust in science.
[i] Transparency, communication and trust: The role of public communication in responding to the wave of disinformation about the new Coronavirus (OECD.org, July 2020 last accessed 8 Oct 2021)
[ii] Witze A. How to detect, resist and counter the flood of fake news. Science News. 6MAY 2021. How scientists are fighting fake news and misinformation | Science News
[iii] Mamak, K. Do we need the criminalization of medical fake news? Med Health Care and Philos 24, 235–245 (2021). https://doi.org/10.1007/s11019-020-09996-7
[iv] Menczer F, Hills T. Information Overload Helps Fake News Spread, and Social Media Knows It – Scientific American 1DEC 2020
[v] Chou W-YS, Gaysynsky A, Cappella JN. Where We Go From Here: Health Misinformation on Social Media. Am J Public Health. 2020;110(S3):S273-S275. doi:10.2105/AJPH.2020.305905 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7532328/
[vi] Suarez-Lledo V, Alvarez-Galvez J. Prevalence of Health Misinformation on Social Media: Systematic Review. J Med Internet Res 2021;23(1):e17187 10.2196/17187
[vii] Treharne T, Papanikitas A. Defining and detecting fake news in health and medicine reporting. Journal of the Royal Society of Medicine. 2020;113(8):302-305. doi:10.1177/0141076820907062
[viii] Sykes A, Whann B, Dooley S. A Company’s Approach to Developing Publication Plain Language Summaries | the Map (ismpp-newsletter.com) 10AUG2021
[ix] Tinari S. The EMA covid-19 data leak, and what it tells us about mRNA instability BMJ 2021; 372 :n627 doi:10.1136/bmj.n627
[x] Ottwell R, Puckett M, Rogers T, Nicks S and Vassar M. Sensational media reporting is common when describing COVID-19 therapies, detection methods, and vaccines. Ottwell R, Puckett M, Rogers T, et al. J Investig Med 2021. Epub ahead of print doi:10.1136/jim-2020- 001760
[xi] American Medical Writers Association, European Medical Writers Association & International Society for Medical Publication Professionals AMWA-EMWA-ISMPP joint position statement on medical publications, preprints, and peer review, Current Medical Research and Opinion, 37:5, 861-866, DOI: 10.1080/03007995.2021.1900365h
[xii] Belluck, P. Many ‘Long Covid’ Patients Had No Symptoms From Their Initial Infection. 8MAR 2021. https://www.nytimes.com/2021/03/08/health/long-covid-asymptomatic.html
The authors acknowledge editing and project management assistance from Beryl Gonzalez – Meridian HealthComms.