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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:


 

 

 

 

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Matthew Gordon

VP, Real-World Evidence
Matthew has more than 25 years of experience in real-world evidence and observational, non-interventional research. He has led studies across the full life cycle—from startup through publication—supporting objectives that range from understanding a disease’s natural history to fulfilling global safety surveillance requirements. Matthew brings deep expertise in orphan disease programs, having overseen more than 25 long-term, global initiatives, as well as in disease and product registries, prospective pharmacoeconomic studies, and systematic literature reviews. Matthew leads the RWE Registries team, responsible for building the business and team. Prior to joining Aptitude Health, he held senior leadership roles at Parexel, Worldwide Clinical Trials, inVentiv Health Clinical, Quintiles Outcome, and ICON Clinical Research. Matthew holds a BA in sociology from Boston University, is a long-standing member of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), and is a frequent speaker at ISPOR, the Center for Business Intelligence, and related industry conferences.

Gerald Stanvitch, PhD

VP, Scientific Content

Cate Browning, PhD

VP, Global Medical Affairs

Erin Zingales Rau

VP, Account Services

Kelly Kocor

VP, People & Culture
Kelly leads both the human resources and talent acquisition teams, ensuring that Aptitude Health attracts, retains, and develops top personnel to drive our continued success. With over 17 years of experience transforming global HR initiatives, Kelly is an expert in harmonizing HR policies and fostering a culture of engagement and partnership. She is committed to partnering with all areas of the business to ensure full regulatory compliance and delivering value-added services to our organization and its people. Kelly is passionate about developing and implementing HR strategies that help support our employees’ professional and personal growth. She is dedicated to fostering a culture that encourages innovation, collaboration, and inclusivity, helping Aptitude Health continue to be a great place to work.

Bart Zygmond

VP, Finance
Bart brings a wealth of experience to the organization, having worked in the life sciences, pharmaceuticals, manufacturing, and service industries. With his expertise in financial reporting, US GAAP, SOX, cash flow modeling, and financial analysis, he plays a crucial role in the company’s financial management and strategy. Prior to joining Aptitude Health as VP, Finance, Bart held several controller positions: at Q2 Solutions, he oversaw the global finance team and financial operations, ensuring the accurate and timely financial reporting of the company. He also held controller positions at Domtar Inc and Veristat.

Eugene Vissers, MD

Senior VP, Global Scientific Content
Eugene is a seasoned medical doctor with over 20 years of international experience in pharma, consultancy, and agency environments. Eugene leads the US team of dedicated experts responsible for developing high-quality medical content. Prior to joining Aptitude Health, Eugene served as medical director at Ipsen and AstraZeneca. With both his medical degree and an MBA, Eugene brings a unique perspective to his role. His clinical background, combined with his business acumen, allows him to develop innovative strategies that drive results. Under Eugene’s leadership, the medical content team delivers scientific information of the highest quality, providing valuable insights to our clients around the world.

Adrian Barfield

VP, US Business Development

Kelley Hernandez

Executive VP, US Business Development
Kelley has over 18 years of experience in the oncology space. Kelley joined Aptitude Health after working with Cardinal Health, where she was part of the Healthcare and Analytics Division, and finished her tenure there with VitalSource™ (GPO division). As the leader of the strategic business development team for the US, Kelley brings a wealth of expertise to the organization. Her experience in the healthcare industry, combined with her ability to identify and capitalize on new business opportunities, is invaluable in driving the company’s growth and success. Kelley’s dedication to building strong relationships with life science partners is a testament to her commitment to delivering exceptional value to the healthcare industry.

Adam Sinensky, MBA

Chief Technology Officer

Adam has over 20 years of experience in the healthcare industry and an MBA in healthcare management. After 10 years as a strategy consultant to life science companies, Adam has spent the last decade as a product and strategy leader focused on bringing technology products to market across the payor, provider, and life sciences segments. By combining his business acumen and experience working directly with software developers, engineers, and data scientists, Adam has successfully led numerous product launches and enhancements from ideation to development and go-to-market initiatives. His product and change management expertise has led organizational shifts from services to technology at companies such as Change Healthcare and Datavant/Ciox. At Aptitude Health, Adam is responsible for growing our portfolio of product offerings by leveraging real-world data and artificial intelligence with our existing solutions and industry-leading Axess Network of healthcare providers. He also oversees our IT and cybersecurity teams.

Stefanie Daniels

Chief Commercial Officer

Stefanie is a seasoned healthcare executive with over 20 years of experience in oncology. She brings a wealth of knowledge and expertise to the organization. Stefanie joined Aptitude Health after spending over a decade as a senior director at Physicians’ Education Resource, an oncology CME vendor. During her tenure, she led and managed teams responsible for grant development/acquisition, program creation/execution, and faculty management. Stefanie’s deep understanding of the oncology industry and her ability to lead teams through complex projects make her a vital part of the organization’s success. Her dedication to providing high-quality solutions to our life science partners is a testament to her commitment to improving cancer patient care.

Jason Cash

Chief Financial Officer

Jason is an accomplished finance professional with over 20 years of experience in the pharmaceutical services industry. Throughout his career, he has demonstrated a keen ability to navigate high-growth organizations, delivering exceptional results. Before joining Aptitude Health, Jason served as the CFO of Veristat International, a global contract research organization. In this role, he led the financial strategy and played a pivotal role in driving the company’s growth and success. Jason’s wealth of experience and expertise in financial management make him an essential member of the leadership team. His strategic thinking and ability to drive results are highly respected within the industry.

Jez Moulding

Chief Executive Officer
Jez is a seasoned leader with over 20 years of experience in general management and regional president roles. He has a proven track record of success in the healthcare industry, having worked in the US, Japan, Australia, Korea, South Africa, France, and the UK for Sanofi, where he supported the launch of 10 new drugs across various therapeutic areas. As chief commercial officer at UDG Healthcare and EVP at Ashfield, Jez demonstrated his expertise in developing and implementing successful business strategies. He joined Aptitude Health from Pharmaspectra, an IQVIA business, where he served as CEO since 2018. Jez’s extensive experience in the pharmaceutical industry and his leadership skills make him an invaluable asset to the organization.
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