By Daniel Ghinn 
Healthcare Engagement Strategy Awards 2010
Award: Changing Healthcare Award
Winner: Patientslikeme
It’s not the fact that Patientslikeme has a community of 50,000 patients that wins it this Award. It’s not the incredible way it grew a community of almost 10,000 Fibromyalgia patients in 2009 – with over 850 more joining in just the first three weeks of 2010. It’s not even the fact that 10% of US patients diagnosed with MS, and 20% of ALS patients, join Patientslikeme.
Patientslikeme wins the Changing Healthcare Award for being the engagement strategy most likely to change healthcare. In fact, don’t take it from us. Ask one of the members who responded to a recent Patientslikeme user survey: 21% of them said they had changed their physician as a result of being on Patientslikeme.
“We’ve probably got more attention than we deserve, for where we’re at“, says Ben Heywood, Patientslikeme Co-Founder and President. It’s not the only time during my conversation with him that he plays down the scale of what Patientslikeme has achieved. “We’ve only just barely scratched the surface of the journey“. These are the words of a man who has seen the immense possibilities that emerge when healthcare becomes truly patient-centered, but knows there’s still a huge task ahead.
“One of the things we are attempting to do is to put the patient back in the centre of healthcare“, says Heywood. “The first thing that means is giving them the information that they need – not the information that’s defined by the healthcare industry… but the information that the patient needs to answer their question: ‘Given my status, what’s the best outcome I can hope to achieve, and how do I get there?’. That defines what we do.”
Patientslikeme is a patient community like no other. In fact, it is a collection of patient communities. Heywood says that as Patientslikeme grew since its launch four years ago, he and his team learned that there was really not much in common between the information needs or measurement paradigms of patients with diseases as diverse as Parkinson’s, MS and depression.
“I think our platform is significantly better than it was when we started, but really we’ve just only started on that journey“, says Heywood, referring to the changes that had to be made to keep all patients at the centre.
Amongst the direct outcomes for Patientslikeme’s members are the effects of enabling patients to find others with similar conditions.
“For patients and caregivers, we are there every day, making a difference. I can see it every day – we have this stream internally of anecdotes of people talking about how it’s changed their lives“. In Patientslikeme’s recent member survey, 85% of respondents said that they felt better about themselves because of recognition from others that their condition is real.
And the potential long term outcomes for healthcare are incredible. Browsing any of Patientslikeme’s communities provides a glimpse of the information that can be gained when thousands of patients share information about their experiences and treatments.
Heywood is cautiously optimistic about how this information might change healthcare in the long term. “This isn’t a controlled clinical trial; this is an evolutionary platform that’s continuously trying to measure better and better, human health”, he says. He sees potential for the data to be used in the clinical research space, but says there are barriers to overcome. “We know there’s a hurdle as a healthcare professional, coming to… this information that’s collected through shared experiences. …We have a long way to go to achieve full acceptance of this data.”
Advice for others? Heywood has two key points:
- Health data is individual, so doing something meaningful with it is a challenge. It’s not simply about adding IT to healthcare.
- Start by aiming to solve an individual patient’s problem; then solving two patients’ problems; before solving the whole community’s problems. Otherwise, it becomes too big a challenge.
Patientslikeme, for taking the power of a patient network and using it to change healthcare for patients right now, we award you the Healthcare Engagement Strategy Award 2010, Changing Healthcare Award. And we know there’s more still to come!
View all Healthcare Engagement Strategy Awards 2010 winners.
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