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New medicines which have the potential to transform patients’ lives need to be offered to the appropriate patient at the right time; this is important for most medicines but is especially so in the field of gene therapy. Clinicians need to know that new medicines are available and be able to describe potential risks & benefits to patients. Patients need to understand their options and be able to communicate treatment preferences back to the clinician. Although the concept of shared decision-making between healthcare professionals and patients is simple, fewer than 15% of US adults have the health literacy skills needed to engage with & navigate the health care system. Low levels of health literacy have also been reported across Europe and Asia.
Health literacy is described as the ability of a patient to read, understand, and use health information. Low health literacy can affect anyone, regardless of race, age, income, or educational level. It differs from fundamental literacy or basic literacy skills but is the cornerstone for shared decision-making. Health literacy allows patients to be active participants in their healthcare. Broad efforts are underway by the Agency for Healthcare Research and Quality and the Institute for Healthcare Advancement, amongst others, to educate healthcare professionals on best practices in health literate patient communication, and to support organizations, such as hospitals, as producers of health information and services to equitably address health literacy. The adoption of best practices by healthcare professionals and organizations is increasing, but wide gaps exist, especially for new and scientifically complex innovations. In the absence of clearly communicated science there is room for misinformation, particularly in gene therapy where accusations of meddling with genetic makeup have the potential to run rife. Health misinformation has been connected to adverse consequences such as reduced quality of life, treatment delays, and increased risk of early mortality. How can a topic as complex as gene therapy be clearly communicated to allow for equitable and empowered decision-making? First, patients need to be engaged in gene therapy discovery, development, and delivery. For example, they can share the relevance of gene therapy (discovery phase), help select clinical trial endpoints that are important to them (development phase), and identify potential challenges and solutions to receiving gene therapy in the real world (delivery phase). Among other benefits, involvement of patients early and often can help shape a common lexicon for all stakeholders who contribute to bringing new therapies from bench to bedside, from scientists and healthcare professionals to payors and patients. Second, healthcare stakeholders need timely and relevant gene therapy education. To achieve this goal healthcare education should consistently apply adult learning principles and provide tailored education to meet the needs of the learner. For example, gene therapy education needs for a rurally located family physician who needs to be able to identify patients who may be eligible for gene therapy, will be different from a specialist physician responsible for communicating the risk-benefit profile of a gene therapy with a specific patient, and different again from a payor who is assessing the value of a gene therapy. Medical education needs to evolve from its current conventional multichannel approach (lectures, articles, videos, webinars, podcasts, congresses, and social media) to an omnichannel approach. An omnichannel approach delivers multichannel education in an integrated way. It is designed to spur greater engagement and learner retention by creating personalized learning experiences based on the learner’s needs and preferences. It additionally lends itself to continuous learning and bite-sized updates which may be especially important in areas of quickly evolving and complex science such as gene therapy. The healthcare industry can learn from omnichannel pioneers, such as Amazon and Spotify, as it transforms medical education to better meet the learning experience being demanded by healthcare stakeholders. Third, patient materials should be developed following health literacy best practices for readability, understandability, and actionability, and at a minimum be routinely tested via freely available standardized tools such as the Flesch–Kincaid readability tests and the Patient Education Materials Assessment Tool. None of these strategies to clearly communicate health information are unique to gene therapy. As the science becomes more complex, however, clear communication is imperative to ensure science, not health misinformation or an absence of information, leads the conversation.