Importance Patient Perspectives Medical Research Communications Key Takeaways From ISMPP Annual Meeting

The Importance of Patient Perspectives in Medical Research: Key Takeaways From ISMPP’s 19th Annual Meeting

The 19th Annual Meeting of the International Society for Medical Publication Professionals (ISMPP) was held in Washington, DC, from April 24 to 26, 2023. As in previous years, part of the Aptitude Health team of Certified Medical Publication Professional (CMPP)-credentialed medical publications experts was present at the meeting: Sandra Mendes, PhD, and Iratxe Abarrategui, PhD, not only represented the company in the exhibition hall, but they also attended most of the sessions. They prepared a flash report summarizing the content presented during the meeting that was centered around the theme “Patients First!” This blog post provides some insights on the topics discussed during the conference. You can request a full copy of this complimentary report by clicking on the button at the end of this post.

Value of the Patient Voice and the Importance of Engaging Patients in Medical Research and Communications
The conference focused on the inclusion of patient insights in medical research and communications and featured key discussions on the significance of patient voices, advancements in science and communication, user experience enhancement, digital and social media, and the promotion of equity, diversity, and inclusion.

Sharon Terry from Genetic Alliance stressed the need for transformation in medical research and communications to benefit all. Patient partnerships and meaningful involvement are crucial for maximizing healthcare outcomes.

The “Patient Premiers” session celebrated initiatives that catalyzed change, featuring publishing, pharma, patient, and medical communications perspectives.

Patient Involvement in Clinical Research: A Crucial Component for Success
Clinical research often lacks sufficient patient involvement in the study design, execution, and communication of findings. To ensure meaningful outcomes for both patients and regulatory agencies, it is crucial to include the perspectives of patients. Researchers must communicate the study’s purpose, address personal goals and fears, and ensure that results are shared using plain language.

Successful clinical research involves patients from start to finish, incorporating their input in study design, data analysis, and reporting. Patients should be included as co-authors in publications, ensuring that accessible language and visual aids cater to patient audiences.

The Good Publication Practice guidelines emphasize the role of patients in publications. Patients can contribute by helping to identify research questions, providing input on study design, and ensuring readability of the publication. Patient-friendly summaries should be freely available, indexed, and discoverable for all publications.

Adopting clear, consistent, and inclusive language encourages patient involvement, making them feel valued as equal partners. This inclusion fosters diversity and accessibility in clinical research, leading to more effective and meaningful outcomes.

Evolution in Science and Communications
A recent discussion identified 4 crises impacting science and communication today: overbureaucracy of funding, patient involvement and public input, explaining complex ideas in simple terms, and artificial intelligence’s (AI’s) potential impact on communication. Fast Grants, a charity providing quick funding for scientific research, offers an alternative to the slow and consensus-oriented traditional funding process. While scientists desire more public input, they must acknowledge the cost of open communication, which may lead to misinformation and politicization.

Generative AI tools like ChatGPT (OpenAI) and BardAI (Google) have immense potential in medical communications, but they also raise concerns about transparency, regulation, and privacy. The American Society of Clinical Oncology is developing guidelines for AI use in medical communications.

Machine-learning scientist Loubna Bouarfa shared insights on the ongoing fourth industrial revolution, with AI playing a leading role in transforming life science and health care. Trustworthy AI, characterized by transparency and explainability, is essential for successful adoption. AI is expected to significantly impact medical writing in the coming years, with ethical concerns remaining a challenge.


You can request your complimentary copy of the full flash report here: