PatientsLikeMe: How patient experience can change the world

Jamie Heywood co-founded www.patientslikeme.com in 2004 after his brother Stephen was diagnosed with Motor Neurone Disease. A health information sharing website for patients, they hoped the site would help them find ideas to extend and improve Stephen’s life.

Now with more than 200,000 members, the site is helping to transform the way patients manage their own conditions, change the way industry conducts research and improve patient care through its sharing of real time health data. We spoke to Jamie about why he thinks the site has the potential to change the world of healthcare for the better.

Tell us a bit about PatientsLikeMe

The site encourages patients to share both personal stories and health data about their condition. People can find information about their illness and available treatments, while also connecting with other patients with the same conditions. This peer support is particularly important. You might work really closely with your doctor to manage your illness, but there are some questions only other patients can help you with. Every condition has its own unique set of questions, and we see them answered every day on the site.

And how is it helping to improve healthcare?

The data we’re collecting on PatientsLikeMe is helping to accelerate the discovery of new options and diagnostics. With 200,000 plus members, engaged and willing to share in-depth information on treatments, symptoms and outcomes, it’s a gift to anyone interested in medical research.

We can sample information, looking at different variables to see who responds to what treatments. We’re also helping to develop new ways of measuring disease better (for example our work with Max Little, Ph.D., into whether tremors in your voice can determine how ill you are with Parkinson’s).

These things are accelerating the research process and helping to reduce the time and money it takes to develop new treatments. Our open model allows clinicians, providers and the pharmaceutical industry to better understand diseases and patient experiences. And patients benefit while at the same time actively partnering with industry to improve care.

Why do you think collecting patient experience is so important?

If you think about industries that work well, like automobiles or telecommunications, it’s the sharing of consumer feedback that drives them to be better. None of our current healthcare systems (either the NHS or more commercial models in the US) really has this kind of accountability loop that asks: ‘Did the system deliver value to the people it serves?’

Allowing patients to share information about treatment outcomes creates that accountability. It creates a functioning system so that errors, best practices or effective treatments become visible and connected. This opens the door to what I call ‘measurement-based medicine’.

Tell us more about ‘measurement-based medicine’

The sad truth in medicine is that even though we say we use evidence, often it’s just really educated guesses. Let’s take a very straightforward procedure like a hip replacement... there’s lots of variables that affect whether it produces an improved outcome for the individual.

In order to really know whether it’s worked we should measure what the issue is with someone’s walking and pain prior to surgery, record exactly what was done during the procedure, and then what happens a week, a month, a year later in terms of pain and how they’re walking. You can then start to understand the relationship with other things, such as whether high blood pressure or diabetes make the hip replacement more or less effective. That way someone doesn’t get ineffective surgery, and avoids unnecessary pain. That’s what I mean by ‘measurement-based medicine’.

We really have to build a measurement culture in medicine. A great society like the United Kingdom that invests 10% of its resources in healthcare should measure whether it’s doing that well. And that’s an active partnership between the citizens and the system itself. But it’s a cultural change too.

Are you developing new ways to measure patient experience that could be used by the UK health services?                   

Absolutely. PatientsLikeMe started in areas where ‘how the patient feels’ is really what describes how severely sick they are: mental health or Parkinson’s disease for example. So we could measure things without needing the medical system to get involved.

The next step will be to partner with a health system, using measures that are relevant to everyone: the patient, the physician and the system. We’ve already demonstrated that patients will join in.

One of my favourite quotes is John F. Kennedy’s ‘ask not what your country can do for you — ask what you can do for your country’. Well the NHS needs its citizens to help it figure out how to be better, by providing information so that it can learn. You can imagine how powerful this could be in the NHS, as part of a truly transparent partnership to create a responsive and effective health system. And that’s the kind of partnership that I think we can help create.

Finally, PatientsLikeMe was named ‘one of 15 companies that will change the world’ by CNN Money. How will it change the world?

That was obviously a huge compliment. I think people understand that medicine needs to shift from a system that thinks: ‘we know the answer and we’re just making sure we do it right’ to a system that learns the right answer. Where every patient’s experience informs the next patient’s experience, so that we know the system is learning in real time, just like other markets learn and develop.

I would say we’re only about 5% along the journey to making that happen. But the vision of what’s possible – measuring what happens to everyone and using that to inform everything – that’s the thing that could change all of medicine in a hugely democratic, world-changing way. And whether PatientsLikeMe is the one to do it or not, that vision of a learning healthcare model has to succeed.