Patient involvement as the best path to medical research with real-world impact

Now more than ever before, life science researchers are expected to not only conduct reliable, high-quality research, but also to communicate it transparently. The time of scientists, and by that also medical investigators, as privileged individuals in ivory towers is long gone. Research focusing on medical innovation and human therapeutics is under extensive public scrutiny. The general public is keen on keeping abreast of the newest medical industry developments. In parallel, more and more patient groups are forming, where interested individuals can learn more about a specific disease and (new) treatment possibilities. The logical outcome of this raised awareness of the life science and medical sector is a call to transparent and accessible communication of research data.

To address this growing need in transparency, recent years have seen a massive evolution of medical communications. The numbers of fully open-access journals and preprint servers are increasing, novel data is being shared via more versatile platforms (social media, podcasts, infographics) and more and more patient-oriented, layman-friendly content is available.

Increasing numbers of life science journals have been requesting article authors to provide plain language summaries, to enable non-specialists gain insight into the most important findings and implications of each article. This trend of focusing on the patient interests has gone further in recent years, where patients are not just recipients of information but are also encouraged to actively participate in guiding innovation within the medical industry. Since patients are the ones with first-hand experience of the disease and available treatments, they are best equipped to inform different stakeholders (caregivers, clinical research sponsors, funders and investigators) of the real-world value of a specific research direction. Therefore, many regulatory bodies, funding agencies, publishers and journals are advocating for or even requiring patient-led medical research and patient co-authorship on publications resulting from the said research.

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Sponsors who actively involve patients in their innovation processes and medical communications are likely to reap the following benefits:

Ensure real-world impact of their research by prioritizing clinically relevant rather than only statistically significant outcomes
Extend patient support towards additional non-research business areas
Secure efficient recruitment of volunteers for future research projects
Gain trust and support from patient communities, who will provide broader outreach of the research and advocate for it among the general public
Maintain a tangible patient-oriented reputation within their domain.

Sponsors who fail to involve patients as fellow innovators or co-authors on publications run the risk of being perceived as tokenistic – claiming to be patient-focused without a proven patient involvement. Patients with an interest to participate in medical research will most likely be highly educated and informed individuals, able to creatively contribute to the innovation process. These patients can help design studies and review protocols based on clinically relevant aspects, acquire and interpret data in a way that matters most to patients. By participating in medical innovations in this way, the patients fulfill one of the criteria for becoming co-authors on the resulting publications. Involving the patients early in study design and publication planning will in turn make them more willing to discuss the results with other co-authors, shape the publications and take responsibility for the presented data.

While encouraged, achieving patient co-authorship on medical publications is a challenging, multi-stakeholder task, requiring proper patient training and coordination with the rest of the team. However, it can be attained, as witnessed by an increasing number of patient co-authored publications.

The key to successfully making patients co-authors on medical publications is integrating them into the investigator and author teams early and effectively. Skilled medical publication professionals play an essential role in this process. At Modis, we provide an experienced team of medical communication professionals (publication managers and medical writers), who can help achieve this by:

Motivating the investigators and sponsors to involve the right group of patients in their research topic
Ensuring timely and effective communication between the patients and other stakeholders participating in research
Ensuring patient authors understand and follow timelines and administrative agreements
Supporting patient involvement through theoretical and practical training, ensuring the patients are able to fulfill their roles as co-authors on relevant publications
Ensuring that results are presented in light of what matters most to patients
Translating patient input into content technically appropriate for the documents they are involved in

Irena Zurnic Bonisch
Publication Writer Life Sciences

Source: Interational Society of Medical Publication Professionals (ISMPP) part 1 and part 2

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