Today is the 12th International Rare Disease Day, and this year’s theme is ‘Bridging health and social care.’ To mark the occasion, we talk about the value of online communities in providing a social service for people living with rare diseases.
Rare diseases affect a very small percentage of the population – defined in Europe when a disease or disorder affects fewer than 1 in 2,000 people, and in the U.S. when fewer than 200,000 Americans are affected at any given time – and therefore are often not widely-discussed in the public domain. Indeed, people diagnosed with a rare disease may have never heard of their condition prior to receiving a diagnosis. This lack of awareness can lead to people diagnosed with rare diseases feeling isolated from the world around them.
We learned about these feelings of isolation first-hand ourselves, when conducting research as part of our Patients At The Heart (PATH)* approach with our sister agency, AXON. We learned from those diagnosed with rare forms of brain cancer that many felt forgotten and misunderstood by the public, and even close friends and family. Those we spoke with highlighted that digital groups and online communities helped mitigate these feelings by offering direct access into a world where people have a shared understanding.
Online hubs provide a unique environment to connect an often widely-spread patient population through experience-sharing, knowledge-building and advocacy. Online-sharing helps facilitate the empowerment of patients, by providing a platform for patients to speak, share and connect with others, where elsewhere their voices may simply not be heard. Rare Disease Day itself acknowledges this need to empower the rare disease community, through its #ShowYourRare social media campaign.
Services provided by online communities are by no means limited to patients themselves, but also extend to benefit families and caregivers, who may also be experiencing challenges in sourcing information regarding care, treatment and experiences of rare diseases that affect their loved ones.
Organisations wanting to get involved with rare disease communities, should look to facilitate and support these online networks between people with rare diseases, their families, caregivers and other stakeholders. Through supporting rare disease communities online, organisations will gain a better understanding of the challenges of living with a rare disease, which may ultimately help to bridge the gap between health and social care.
*About our PATH research: Our research sought to understand how language and communications used across patient journeys, impacts on experiences of managing and living with rare and chronic diseases. We identified four points of ‘tension’ in our research that should always underpin how we approach designing communications. More detailed findings on this and how we implement it in the work we do will be coming in 2019. If you would like to find out more about our research or anything discussed here, please get in touch; we want to hear from you – [email protected]