Enhance Accessibility
Patients want — and need — to understand scientific data that can affect their health.
PLS should be available in local languages and multiple formats, including visual and audio. “Adding voiceover to a video makes it even more accessible,” King said. We must have an ambition that PLS, plain-language videos and other materials intended for patients be published Open Access.
Remember that patients’ ability to access and understand medical information can be affected by their emotional state as well. “When you’re creating content, know that you may be creating content for someone who is having a really difficult day,” Malone said. Patient input can help you select the proper terminology and strike a patient-friendly tone.
Post-Publication Engagement: Information Dissemination
Patients are well positioned to share health information with other patients and health care providers.
“Patients and families who live with rare conditions often educate ourselves and bring things forward to our physicians,” Dubois said. Congenital adrenal hyperplasia, the condition that affects Dubois’ son, is a small part of his endocrinologist’s practice, so Dubois is often aware of new clinical trials and research before her son’s physician.
Advocacy organizations and patients can “use their platform to share with their community, particularly when they have been invested and involved,” Riaz said. PLS can be shared via social media, community newsletters and during patient events.
Patients can also be involved in the dissemination of information to professional audiences. Consider including audio slides featuring patient voices, for instance, during presentations
Assess the Impact of Patient Involvement
Assessing the short-term effect of publications can be challenging because online engagement with articles typically fluctuates and changes over time. We often turn to basic quantitative metrics, such as website hits and article views, which can be compared between articles that do and do not include the patient voice. However, the picture this generates can be one-dimensional and may not capture all levels of engagement.
Soliciting feedback from the patient community provides deeper insight than looking at the number of page views. “Speak directly to the patients who have been involved so you can understand how they feel about it,” Allred said. “Do they feel like it was a success? In the short term, that’s most important.” Furthermore, feedback is a two-way street, and an open dialogue with patients — not only about how they view the resulting publication but also from us about the effect and importance of their input — ensures that patients feel their voice matters. Building relationships with patient-advocacy groups is key to maintaining these open dialogues; partnering with an agency that has strong ties may help when soliciting honest feedback that can help improve processes for all involved.
Ultimately, inclusion of patients in publications may fundamentally change how we conduct research and assess the success of clinical trials and health economics and outcomes research.
“In the long term, the real measure of success will be how the patient voice changes our approach to clinical trials, real-world evidence studies and the reporting of data. What patients consider important does not always align with outcome measures in clinical trials. Although I don’t think this is something we’ll be able to measure for a number of years, I am excited and hopeful about the changes that may happen.”
Imogen Allred Senior Medical Writer at OPEN Health
Embracing the Patient Voice
“Understanding patients’ unmet needs and what it’s like to live with these diseases on a day-to-day basis is so important.”
Alex Dubois Senior Vice President for Patient Engagement at OPEN Health and a Board Member of the CARES Foundation
Involving patients throughout the publication process offers another opportunity to build trust with patient communities and will help ensure that clinical and health economic and outcomes research becomes more accessible. When patients are better informed, researchers and clinicians gain a better understanding of the patient experience, and patients can, if they wish, participate in their health care decisions as equal partners.
We are on a journey to unlock the full value of embracing the patient voice in publications. We believe this will be achieved through thoughtful patient engagement along with scientific rigor and good publication practices. When planning your publications with your authors, please consider how OPEN Health can help deliver positive outcomes for all.
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