Stewarding Hope: The Evolving Landscape of Huntington’s Disease Science Communications

For individuals faced with Huntington’s disease(HD), media— social, online, print, and otherwise— can be simultaneously a blessing and a curse. From Google alerts to listserves, Facebook forums to web-based communities, in today’s day and age there is no lack of access to information about the newest research topics and care trends. Unfortunately, making sense of this volume of information presents a modern challenge to families who are eager to follow every whisper of hope.

Some information is blatantly untrue. Thankfully, this information is usually caught by the filters of traditional media outlets and family forums are quick to police out the obvious falsehoods. More challenging, however, is the volume of press releases and journal articles from academic and corporate research alike. These sources may be truthful in their presentation, but without context, patients are left to figure out how relevant and ‘hopeful’ the information really is.

Consider the number of articles that include the words HD “cured,” “delayed” or “treated” in their headlines. In the last 10 years, far too many news releases promoted findings in this manner, raising the expectations of families affected by HD around the globe. For example, we have read about “ground-breaking evidence for a cure for Huntington disease” or that a “nutritional supplement slows onset of Huntington’s”. Some institutions have even claimed its researchers had discovered a “way to delay symptoms of deadly Huntington’s disease.” If true, these are the types of research breakthroughs that answer the dreams of generations of HD families.

Unfortunately, use of these headlines to represent the underlying data is often misleading. The truth is that there are no current therapies that could reproduce these claims in people, but the average HD information consumer would not have this knowledge base. And while it may seem obvious, too often institutional press offices forget the simple fact that mice are not humans.

While over-hyping research results may get the attention of media outlets, the burden of the false expectations they create is a real challenge for families, patient advocacy organizations, clinicians and scientists. Exaggerated reports can put the aforementioned groups in a state of damage control by having to manage unrealistic expectations of the patient community and place them in the unfortunate situation of being seen as dashing hope.

In the past, groups like the Huntington’s Disease Society of America (HDSA) relied on annual print publications and mailings to share important research information with the community. Rising shipping and printing costs (both financial and environmental) and the slow speed of transmission have made “snail mail” an antiquated information delivery device. The pace of HD research has accelerated exponentially over the past 15 years and so too has the ability to disseminate that information via online media, websites, personal blogs and unmoderated social media sites. This means evolution of our communication strategies is essential.

In recent years, HD patient and science organizations have reacted to this problem by creating their own networks and resources to try and get ahead of the news and address misinformation. A number of reputable groups have developed online patient-friendly resources to expedite the transfer of important research results. Organizations like HDSA, the Huntington Study Group, Hereditary Disease Foundation and CHDI Foundation, host annual meetings and conventions to share the latest in HD research and care. While these forums are not new, the recording and live webcasting of the scientific talks for many of these is new. Without incurring the travel costs and burden to attend a conference in person, HD families can now watch recorded versions of conference presentations from the comfort of their own homes. For example, the 2016 Annual HDSA Convention in Baltimore, MD had 950 attendees; however, attendees that were able to watch live or archived research sessions totaled more than 1,500 people. Similarly, online sources, including Facebook Live and YouTube, allow delivery of live video content and recorded research webinars to thousands of HD families at the press of a button.

To specifically address the challenge of providing context for HD science news, HDBuzz.net (HDBuzz) was launched in 2010 as a unique information hub for HD families. HDBuzz is a web-based resource that translates HD research news into plain language so that families can truly understand what is being reported. Co-founders Dr. Edward Wild (University College of London) and Dr. Jeff Carroll (Western Washington University) assembled a team of scientists to provide an impartial and easily understood interpretation of important HD research activities. Since HDBuzz launched, it has become a valuable and highly reputable resource for HD family members across the globe.

The positive impact of HDBuzz on the HD community is clear. In an average month, HDBuzz.net receives more than 160,000 homepage views, and approximately 5,000 unique visitors visit the site each day [1]. The demand for their simplified science is also increasing. What started as a two-person writing team has expanded to 30 writers with 129 translators who volunteer their time to translate each of the more than 225 articles published in 13 different languages. For each Facebook post of their articles, HDBuzz reaches an average of 6,700 people. For a rare disease like HD, online community reach like this is impressive.

What is more difficult to quantitate is the emotional impact HDBuzz has had on HD families. Too often, people are blindsided by an HD diagnosis in the family. Finding out that that you are at-risk for HD is terrifying. To get more information, most HD families turn to the internet. After visiting traditional organization websites, many look to peer commentary on social media where blogs and online posts can be scary and leave HD families feeling overwhelmed and hopeless. A resource like HDBuzz can provide a sense of comfort by knowing the information was crafted by actual HD scientists on their behalf, specifically to keep them and their families properly informed on what the potentially confusing science really means to them. It is this non-quantifiable characteristic that has allowed HDBuzz to garner the support of 17 HD patient advocacy and research organizations around the world and will continue to keep them as a mainstay in the research communications strategy for each of these organizations for years to come.

The quickly changing landscape of modern communications presents a unique opportunity for families affected by HD. Using their smartphones, tablets, laptops and more, individuals are following HD news and accessing information in real-time and engaging with one another and thought-leaders as it happens. To support them in this rapid-fire environment, HD organizations have a responsibility to participate with families in these forums and respond with contextual information efficiently, collaboratively and effectively. They must speak with the families on their terms and in their language.

The days of the one-way media announcement, where a press release was issued and the news flatly accepted by the reader, have passed. Today’s HD communications are dynamic and incite conversation from families who are truly engaged in their health and that of their loved ones. Fundamentally, scientists with research news to share should be mindful of the dialog in which they are participating and of the hopes that they may be raising as they seek awareness for their work. To help families navigate these waters, patient advocacy organizations must remain a vigilant counterbalance by providing access to expertise and context to information that stewards the hope of HD families responsibly.

CONFLICT OF INTEREST

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