A big topic of discussion at 18th Annual Meeting of the International Society of Medical Publications Professionals (ISMPP) was plain language summaries (PLS), which are intended for non-specialist healthcare professionals, patients, caregivers, and advocacy groups. It is recommended that all major studies have an accompanying PLS, but uptake is slow.

Meanwhile, the pandemic has ignited a growing interest in clinical studies among lay audiences, prompting more online health searches and ultimately more discussions between healthcare professionals and patients/caregivers. We all agree this a positive trend, right?

Let’s consider the health literacy spectrum, from specialty care to primary care and from primary care to lay audiences – the potential for misunderstanding is staggering. Even though tools that aid in shared decision-making are imperative in the post pandemic world, PLS uptake remains slow. An OPEN Health poster from ISMPP 2022, highlights that only 1.3% of 3,286 articles assessed across 30 journals had plain language summaries between 2019 -2021.

If we remove ourselves from the healthcare communications sector for a moment and cast our minds back to 1992, when the best-selling book “Men Are from Mars, Women Are from Venus: A Practical Guide for Improving Communication and Getting What You Want in Your Relationships” was first published.

The book not only explored the chasm that can exist between a message delivered and a message received but also analyzed the differences in emotional requirements between men and women in a heterosexual relationship. Yet, the premise can be applied to health communications. Let’s take a leap and apply a broad-brush approach in a chronic disease scenario.

The emotional needs of healthcare professionals may range from being respected as an expert, to being confident about a diagnosis, to seeing their decision address the clinical manifestations of a given disease. Whereas the emotional needs of patients could cover being seen and heard as a person not a disease, wanting to be confident they have the right diagnosis, and knowing their treatment will help them live as they choose, not bound by clinical markers.

Now if we stop to dissect an exchange between this healthcare professional and this patient. There is no question that the healthcare professional’s intention is to explain the diagnosis or treatment option in an approachable manner, but years of training and a highly technical understanding will inevitably result in default jargon. So, the question should not be what did the healthcare professional intend to say? But rather what did the patient/caregiver hear? What did they understand? How did it make them feel? Will it encourage them to ask more questions in the future? Who will they ask? How reliable is this source? How many sources can they explore? And so on…

This analogy is not meant to trivialize the challenges of shared-decision making in today’s information-rich world but to punctuate the need to accelerate the democratisation of data. Development of plain language summaries alongside clinical manuscripts and under the auspices of publications practitioners will ensure data is shared in a reliable, credible manner as peer-reviewed publications.

Discussions during various sessions at ISMPP shared the types of PLS formats available, where they can be found, and how they can be indexed. It was also widely acknowledged that access remains a barrier and celebrated those companies embracing open access portals for PLS. The sessions also brought a call to action within industry to explore more: more discussions with journals to encourage increased adoption; more channels; more opportunities to share data, such as abstract PLS, in conference announcements – all to help non-specialists, patients, and caregivers keep abreast of the most recent findings relative to a condition.

My personal motivation to work in this industry remains unchanged after 20 years – I want the work we do to help improve the lives of patients and caregivers. So, a topic I would like to explore more is the authorship of PLS. An effective PLS is not a jargon buster but a true appreciation of perspective and tonality of the end-user audience – the patient/caregiver. And if non-specialist healthcare professionals are expected to bridge the gap between specialty care and care within the community, they also need to have the right tools to support them. We heard some medical writers attest that they did not feel qualified to author an effective PLS, whereas others feel confident pivoting with ease. My question for ISMPP is: should we explore accreditation for PLS so we can work towards a standard across all therapy areas, with health literacy levels vetted by specialists beyond the clinical research community?