The Domains of Patient Participation in Depth
KEEP PATIENTS INFORMED THROUGH THOUGHTFUL COMMUNICATIONS
One of the longstanding challenges in HEOR has been that communications were traditionally not tailored to be engaging for, and easily comprehended by, diverse audiences, including patients. Information about the research process and its outcomes must be presented in a way that is both accurate and fully understandable for all stakeholder groups. All communication mediums that support this should be used — including digital or social media, where appropriate — and the process should be designed to enable shared decision-making.
Oliver Childs, BSc, elaborates on the need to communicate in non-specialist terms: “There are parallels between legalese and health jargon,” he says. “When you go over legal documents and contracts, you find that they are very much geared towards people with a solid grounding in law. The medical field is similarly inward-looking in the language we use — it tends to be much more medicine-centric than patient- or end user-centric. We’re not putting ourselves in the shoes of the person looking at the website, brochure, or app. This is categorically not about dumbing down information – it’s about ‘opening it up’ to be more accessible. Simpler does not mean simplistic.”
Jasmine Malone, BSc, explains that ultimate goal of HEOR communications is to facilitate accurate information exchange. “The challenge of sharing scientific information with patient communities is an exercise in health literacy communication,” she says. “The starting point is to understand right from the beginning that there is no longer just an academic audience to consider at the end of any research or scientific data project. In an information age, where the internet offers a library of content that is far more accessible than anything was in the past, more and more people are turning directly to scientific papers for their data.”
“Audiences know that they need to go straight to the horse’s mouth and look at what the scientists have written about their condition, whether that is potential treatments, survival rates, treatment adherence rates, or side effect monitoring. But when they look at those academic papers, they are in danger, because those papers are written for a level of health literacy that is so much higher than the average person’s, educated or otherwise.
This drastically increases the chance that lay readers could draw misinformation from papers that they do not wholly understand, or that their comprehension of what they read might not reflect the entirety of the picture that the research presents. It is crucial for those papers to be made available at multiple levels of health literacy.”
“HEOR has to be understood by the patient,” says Larry Radican, PhD. “We have a lot of specialized terminology within the field that’s not accessible to wider audiences. But HEOR is about practical things, like quality of life, work function, social function, family function, treatment satisfaction, preferences. These are very down-to-earth terms. Why don’t we use them more, instead of relying on jargon?”
Radican sees three main places within HEOR communications where the language could be made more accessible. “First is the inclusion of patient lay summaries (PLSs) with published articles,” he says. “We are seeing more and more journals accepting and even requiring PLSs, which is very encouraging, because it provides an opportunity for the research team to distill their jargon down to something that is accessible and usable by everyone reading the paper.”
“Next is the use of graphical abstracts to get a message across quickly,” he continues. “A graphical abstract is a box on the page containing extremely brief descriptions — usually just a few words — of the study objectives, methods, and results, combined with graphical representations of the research; this may include infographics of patients, technology, and equipment that was used in the study, outcomes, or events of interest. When we combine a PLS with a graphical abstract, we can deliver the most critical information about the study very concisely and quickly.”
Finally, Open Access publishing can also help, particularly if care is taken to ensure that language and presentation of findings are no longer barriers to understanding. In the Open Access model, published academic research is made permanently and freely available online. This includes peer-reviewed scientific research published in academic journals. All of these results can be built upon by other experts working in the same or adjacent areas, or read and shared by members of the general public.
THERE ARE FOUR KEY AREAS OF DATA COMMUNICATION THAT WE FEEL COULD BE IMPROVED:
1. Data-heavy research can be very difficult to navigate. Rather than saturating a paper with tables, what we can do is create an accessible dashboard tool that enables the user to interact with large amounts of data and even perform some basic analytics.
2. PowerPoint presentations are a common means of communicating research, but they can be quite linear and repetitive. We have ways to add more dynamism and creativity. We can combine data streamlining with the presentation, for example by integrating a slide deck and an impact model into the same tool. The user can then interact with the different aspects of the tool to best showcase the data for different audiences.
3. A lot of journal articles have appendices filled with tables of data. We can create an HTML file that includes all those extra pieces of data to act as a supplementary appendix to the article. Instead of having to make a whole second PowerPoint to explain the publication, clients can just use that one file, which lives on the journal’s website, as a detail aid. This has been very useful for data-heavy articles
4. When you perform a comparative effectiveness analysis, every country needs its own analysis because every country has a different list of chemicals or drugs that are approved and not approved. This has meant that the analysis will have to be redone for every submission. We can create an online tool that automatically performs those adaptations. We input all the data once, and then the user can perform any investigations or analyses they like with their own parameters.
— Sonya Snedecor, PhD, Executive Director, HEOR and Strategic Lead, Interactive Analytics and Communications, OPEN Health