“Ask questions. Get answers. Connect with others like you”, reads HealthUnlocked’s invitation on its website, a mega-community of more than 500 individual patient communities all over the world, united by disease, treatments, and in some cases geography.
I accept the invitation. Since I’m currently editing a research study on views about treatments for diabetes, I enter the name of a product and hit ‘Search’. In around one second, the first page of thousands of results appears: personal stories from patients about their experiences with the product I searched for.
Each story is the beginning of a conversation among patients, advising each other and sharing experiences. The stories are posted in numerous different communities, ranging in topics from coping with chronic disease to healthy living.
I’m quickly hooked and decide to connect with others like me, as HealthUnlocked suggests. I join the ‘Couch to 5K’ community, a forum supporting NHS Choices ‘Couch to 5K’ running plan for beginners. From here I can join in conversations with more than 15,000 others who, like me, are beginning to take up running.
Built for technophobes
It’s an incredibly simple way to connect with others. According to Matt Jameson-Evans, HealthUnlocked’s co-founder and a former practising Doctor, the platform was developed with ‘technophobes’ in mind, since it had to be accessible to older patients living with chronic disease:
“We’ve made it simple because we think it should be. 85% of HealthUnlocked users have long term conditions, from Atrial Fibrillation to Ataxia, from Lymphoma to Lupus. And over 50% are over the age of 50. When we visualize our typical user we’ll most likely think of the 65 year old technophobe struggling to break the news about her Ovarian Cancer diagnosis to her family than the 25 year old discussing their Jawbone data in our running community. HealthUnlocked is about democratizing peer access for everyone.”
Jameson-Evans says that HealthUnlocked’s success is down to the simplicity of connecting people together. “In 2015 the vast majority of digital health stories are about wearables, gadgets, apps and how they can change the face of health and the role of the patient in the future”, he says. “But simple intelligent human connections through the web is still the big health revolution yet to touch most people.”
This is important because according to data from HealthUnlockled, 67% of new patients had still never met anyone else with the condition online or offline before.
“In 2015 being a patient is still an isolated experience,” says Jameson-Evans. “The mission of HealthUnlocked is to make human health connections easy and intelligent, i.e. personalised and useful. And being able to find someone else who relates with you at a particular moment or stage of life, health or illness is transforming many thousands of lives.”
Finding and starting conversations
When I first met the team behind HealthUnlocked, several years ago, they had all sorts of ideas about how to support patients. In the years since, the service has been refined as the company has learned through the sharing of more than 2.5 million experiences on its platform.
“Back in 2010 HealthUnlocked started off building self-reporting symptoms, outcomes and trackers,” says Jameson-Evans. “Hardly anyone wanted to use them. What exploded was the conversation – from 1.4 million conversation views per month in 2012 to 5.1 million per month in 2014. The penny-drop moment was finding out this was the obvious need. We ditched the trackers and dedicated our technology to making it easier to find or start those conversations and to understand what ‘clicks’ with individual users. Suggestions and recommendations come from what ‘you may also like’ rather than filling in online forms or profiles.”
The results for patients, shared through HealthUnlocked’s member surveys in 2014, are impressive: 90% of respondents said that knowledge of treatment options had improved; 75% said confidence talking to doctors had improved and almost 70% wanted to participate in research including clinical trials, advisory boards and surveys.
Collaboration with industry
This willingness among members to participate in research provides an opportunity that also supports a sustainable business model for HealthUnlocked: the company is able to provide healthcare companies with access to targeted participants for patient market research.
“The same technology that brings people together also powers the business of HealthUnlocked, connecting interested users to opportunities in the rest of healthcare”, says Jameson-Evans. “We map relevant clinical trials, market research surveys and other services to an increasing volume of users wanting to get actively involved in more than a quarterly doctors appointment.”
Perhaps this will be a key theme for the next phase in the e-patient movement: patients who want more than peer collaboration, and are willing and even eager to collaborate with industry.
This article was first published in pharmaphorum.