Empowering patients through innovation

People with motor neurone disease (MND) face many challenges. As their muscles weaken and atrophy, they lose the ability to walk, speak, use their arms, and eventually breathe. Survival is only two to five years. There is no effective treatment.

They sometimes come up with innovative solutions to maintain their quality of life, like texting when speech becomes a problem, wearing silk pyjamas to aid turning in bed, or switching to an electric toothbrush when their grip fails.

Before the Internet, there were no efficient means for the 5,000 MND patients in the UK to share these solutions with each another. That changed in 2002 when the King’s College Hospital MND Care & Research Center launched an online message forum called BUILD (www.build-uk.net) that allowed patients with MND to communicate with one another. Patients and caregivers logged on at any hour, using modified computers in some cases, and were able to take as long as they needed to compose their messages.

It was successful because patients were empowered to share their ideas. Even those unable to contribute benefitted from the system’s accessibility - a quick search of the archives avoided reinventing the wheel each time a problem needed solving.

A more recent development along these principles is PatientsLikeMe (www.patientslikeme.com), which provides online communities for people with severe chronic conditions.

The platform is free to use and allows patients to enter structured self-reported data about their diagnosis, treatments, symptoms and outcome measures. Such complexities are rendered simply onto a single profile page putting a patient’s entire medical history in context - it’s much more than a simple message board.

A recent US study found around a third of patient members were printing out their profiles and bringing them to their doctor’s appointments. In response, clinicians said that having the patients’ treatment regime and recent symptoms had made more efficient use of their limited consultation time.

Educating patients about their condition can also have useful benefits in management: 71 per cent of HIV patients said they took more of an interest in their CD4 count and viral loads as a result of the site, and 63 per cent said they had a better understanding of the consequences of a gap in their antiretroviral therapy. In patients with mood disorder, 26 per cent said they thought less about self-harm, 23 per cent said they had decided to start counselling or therapy, and 22 per cent agreed they needed less inpatient care as a result of information and support they gained on the site.

Three years after its launch, there are more than 65,000 registered patients with some of the most complex (and costly) conditions that patients can experience, including MND, multiple sclerosis, organ transplants, Parkinson’s disease, depression, anxiety, HIV, epilepsy, and fibromyalgia. The data captured in patients’ profiles is aggregated into reports so visitors can see how many other patients are experiencing a particular symptom, what they’re taking for it, and how effective they think those treatments have been, plus any side effects they’ve experienced.

These reports can be a resource for patients to learn about their condition, but also for a junior GP with little experience. They can see which symptomatic treatments their specialist colleagues are prescribing and respond locally to their chronic patients’ needs when they are in between specialist visits.

Although predominantly based in the US, there are more than 800 patients from the UK sharing data about their experiences. Long term, systems like PatientsLikeMe could be woven into the toolbox alongside NHS Direct, the Expert Patient Program, and disease-specific initiatives led by charities and specialist units.

Although initiatives such as PatientsLikeMe are not immune to criticism, ignoring the benefits could risk putting the NHS behind the US in effectively managing serious chronic conditions. Unencumbered by private health insurance, the NHS is uniquely aligned to put patients first in adopting such innovative systems for what is a difficult to reach population.

In the UK, a critical mass of expert patients who connect to one another, with their medical data as the currency of information exchange, has the potential to boost health literacy, empower patients, and become an effective voice in service provision.

We have seen increasing efforts to listen to service users through focus groups and panels, but these efforts are difficult to implement and can be unrepresentative. What if the communities we surveyed about their experiences weren’t just a “typical cross-section”, they were a statistically representative sample of the entire population?

This approach to innovation and empowering patients shows how some of the best ideas can come from those who have direct experience of using services and living with long-term conditions. Indeed, it is a good example of how patients can be empowered to take charge of their healthcare and lead more independent lives - a great example of small government and big society.

• Paul Wicks, PhD, is director of research and development at PatientsLikeMe. He was involved in a webchat on 18 August at 2pm. Read a transcript of the event