If you or anyone you know has ever had a chronic or life-threatening illness, you will probably know that one of the most difficult things for patients and families to cope with is the isolation, coupled with the feeling of powerlessness. For those with a rare disease, it is unlikely that even the health professionals caring for them have much experience of the disease, and it is often hard to make contact with other sufferers, or find information about the disease.
PatientsLikeMe aims to address that. Founded in 2004, it is a patient network which unites people living with chronic diseases and conditions online so they can track their health, learn more about their disease, and also connect with others suffering from the same and other chronic diseases. In the process, they generate data about the nature of each disease in the real world. This helps researchers, pharmaceutical companies, regulators, providers, and non-profit organisations develop more effective products, services and care. It is, in effect, a real-time research platform as well as a patient network.
PatientsLikeMe was set up by two brothers in response to their brother’s illness. It emerged from their wondering ‘are there other people out there like us?’, and ‘is what we’re experiencing normal?’. In particular, they wanted to know quickly about innovative treatments and what might be effective, without having to try everything for themselves. The member community is now over 200,000 strong, reporting on their experiences of over 2,000 diseases.
How does it work?
Members write health profiles, which they use to track the course of their disease and report on hospital visits, new treatments and side effects. The site aggregates data from all users with a particular disease, so that each member can see how they are doing alongside others, and get a real picture of whether their progress is typical. They also provide each other with support that helps to keep them going from day to day.
PatientsLikeMe also works with a wide range of partners, from pharmaceutical companies, government bodies, non-profit organisations and academic groups. Recent collaborations have included work with Boehringer Ingelheim, the Robert Wood Johnson Foundation, and the AKU Society, which works with sufferers of alkaptonuria (AKU). Together with the AKU Society, it developed the first ever open registry for those with AKU.
PatientsLikeMe is committed to working to align the interests of patients with those of industry. This will, it believes, lay the strongest possible foundation for patient-centred care, and particularly, personalised medicine. It also works with non-profit organisations to ensure that the patient voice is well-represented with both industry and government.
As well as an online presence, the company is actively focused on its mobile site, and uses social media to the full to keep in touch with its members, and support them to keep in touch with each other. After all, what use is a network if its members cannot contact each other?
The power of peer to peer
PatientsLikeMe has huge power, in that it provides real-world data for researchers, pharmaceutical companies, regulators, providers and nonprofit-making organisations to use to improve products, services and care. And it’s fair to say that the data has made a big difference to patients. For example, in 2008, data from PatientsLikeMe was used to refute a 2008 paper in PNAS (Proceedings of the National Academy of Sciences) about the efficacy of lithium carbonate on amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s Disease. A paper from PatientsLikeMe was published in Nature Biotechnology setting out an evaluation of the treatment, which refuted a clinical trial. This was the first time that a peer-to-peer network had been used to evaluate a treatment and refute a clinical trial.
At the moment, PatientsLikeMe is largely North American, although it has a growing base of members across other English-speaking countries, including the UK, Australia and New Zealand. As the peer-to-peer network grows around the world, the potential to make a difference obviously becomes greater, and patients will see bigger changes. We can probably look forward to seeing more new initiatives, as well as some of the existing ones that will continue to make a difference to patients’ lives. For example, the Open Research Exchange, which started this year, is the world’s first open participation research platform for the creation of health outcome measures. However, one thing is certain: PatientsLikeMe will continue to do all that it can to put patients at the heart of healthcare, and ensure that it focuses on their needs.