Patients doing it for themselves.

Vivienne Parry explores how and why people with major illnesses are taking control of their own treatment. She looks at cases where patients are not only researching their symptoms by searching and reading medical research online, but also by being actively involved in developing and running their own clinical trials. This has also involved bringing together other patients like them to research treatment and medicines through a trend largely driven by social media. Vivienne Parry looks at the case of Tal Golesworthy who designed his own solution for his hereditary heart condition of Marfan syndrome. With the support Professor Tom Treasure, a cardiographic surgeon, he put a technical team together, started a company, raised money and started working with Imperial College and the Royal Brompton Hospital to develop a new device for his condition. In another case Steve Heronemus, who has amyotrophic lateral sclerosis, challenged the medical establishment along with a group of other people by setting up their own drug trial. Paul Wicks of PatientsLikeMe, a patient-powered research network, describes the tools and medical expertise his organisation provides to support patients involved in clinical trials and research. Other patients with serious and rare conditions discuss how they have used the internet and social media to share their findings and create dialogues with other sufferers. There is a discussion of the resistance of the medical and research establishments to these developments. It is argued that increased access to information through the internet and social media is revolutionising how patients respond to their conditions and is providing new opportunities within the medical profession.