Rx4good Chief Patient Advocate On Taking the Jargon Out Of Patient Content
You headed up a number of patient organizations before joining Rx4good as Chief Patient Advocate and are also a young adult cancer survivor. What did you learn early on about the needs of patients that has stayed with you and guided your decisions in your current role?
When we were developing the core values for my first young adult cancer nonprofit, Planet Cancer, the first one came quickly and was very simple: “Young adults first.” I have held to that principle more broadly—“Patients first”– as a mantra in the nearly 20 years since, as the basis for the driving question “Will this action/program/policy best serve patients?” In healthcare, there can often be as many competing agendas as there are players—physicians, industry, nonprofits, payers, funders— but, at the end of the day I believe that most of us are in it to improve the lives of people dealing with disease. Once that principle is accepted and acknowledged, priorities generally become very clear, and competing agendas—whether internal or external–become easier to resolve.
Healthcare is a complicated subject matter and being diagnosed with a disease is a frightening experience. What are your tips for developing content that uncomplicates the science for patients and caregivers while providing them helpful emotional support?
The “patients first” mantra comes into play here as well: we have to put ourselves in the headspace of patients to create content that serves them well. Think about it: particularly at the point of initial diagnosis, a patient is drinking from the proverbial fire hose. They must rapidly and urgently learn a new language and vocabulary, all while they are overwhelmed, distraught and often physically unwell. Oh, and their life might depend on how quickly and how well they learn it. Materials have to be easily understandable, jargon-less, and readily available at the moment a patient is open to receiving it. Ideally it will be delivered across multiple channels to accommodate different content preferences and learning styles. Graphics, videos and illustrations can also help convey challenging concepts. The benefit of creating effective content that is easily graspable by a patient is huge – it can give them confidence and empower them in their healthcare interactions, which can potentially lead to better outcomes.
What is your view on the effectiveness of pharmaceutical websites that announce clinical trials to patients?
I believe that clinical trial websites are often too narrowly focused and may not adequately consider their target audience. First, they may incorrectly assume that a user already has an existing knowledge base: on clinical research, on the disease, and on therapeutic options. But patients may come into the conversation with wildly varying levels of knowledge about both clinical research and their own disease. The most responsible trial websites ensure that patients are educated about clinical trials in general—not just the one trial they are recruiting for—about their disease, and about the therapy being explored in the trial.
In addition, many sites are hamstrung by a company’s unwillingness and/or inability to stray from approved scientific talking points that were not originally developed with patients in mind. While the content is accurate, it may terrify, confuse, or go right over the heads of patients, turning them off and missing an opportunity to open the door for a more in-depth conversation that may lead to trial enrollment.
Companies should also consider the unique profile of their target patient in order to design a site that reaches and resonates with them; e.g., are they younger or older? Do they have visual limitations? Do you need to provide downloadable resources or a hotline? These characteristics should be taken into consideration when thinking about developing a trial website.
Finally, a trial website should also provide helpful resources and connect patients to related advocacy organizations or educational resources. Even if the trial is not right for them, they will still have benefited from the interaction.
When communicating with patients and caregivers, what creative approaches have you taken to convey an important message in a compelling way?
Visuals, graphics, video and audio are great ways to effectively convey important messages and simplify difficult concepts. Patient stories are a fantastic avenue to bring a message to life in the most believable and resonant way. And for those willing to go a bit farther, humor is a remarkably effective method to make a communication memorable and warmly received.
How do you communicate reflective of the diversity of patients when developing educational initiatives?
First of all, the simplest, most inclusive language will reach the broadest audience. Be sensitive in pronoun usage: he/she/their. Use photos that present diverse individuals to convey a message of inclusivity. Think creatively about which channels may be most effective for materials dissemination to diverse audiences, e.g., churches, barber shops, community health workers. And offering materials in multiple languages can help reach audiences that may otherwise find your site inaccessible.
What excites you most about where healthcare is going vis a vis the patient?
Over the past several years, we have seen a trend toward increasing patient empowerment and inclusion. Companies are hiring Chief Patient Officers to guide their increasing interactions with patients. Patient input is being solicited and included much earlier in the R&D process. Social media gives both patient advocacy organizations and individual patient influencers a much broader platform and larger voice to comment on the activities of institutional players in the healthcare ecosystem, and to hold them accountable. All of these things speak to the elevation of the patient voice and patient input in areas where they have previously been excluded, which is incredibly exciting, long overdue, and morally necessary in an era where healthcare burdens are falling more and more heavily on patient shoulders. My hope is that these initiatives are authentic and will generate meaningful change. Time will tell!