What patients organise for themselves online
Online patient communities provide support, exchange practical knowledge and enable patients to initiate research around their own health concerns.
Support and shared knowledge
By June 2012, online collective health activity extended beyond emotional support and information exchange to health literacy, research, prevention and the search for therapies. Engaged citizen scientists could contribute alongside medical professionals, blurring the boundary between experts and laypeople.
Disease-specific networks can provide emotional and informational support for people with rare or chronic conditions. A study cited in 2012 found that 23% of internet users with high blood pressure, diabetes, heart or lung conditions, cancer or other chronic illnesses went online to find patients with similar concerns.
Patient-led examples documented by June 2012 included:
- DiabetesMine, established by a woman with type 1 diabetes to share medical information and practical advice.
- Crohnology, where people with Crohn's disease or colitis could learn about treatments, meet nearby patients, and track and share their health.
- stupidcancer.com, launched by a young man with rare paediatric brain cancer who felt isolated between adult and paediatric oncology.
- A community begun by a mother with spontaneous coronary artery dissection, a rare heart condition, that eventually prompted Mayo Clinic research into the disease.
Patient-initiated studies
By June 2012, web platforms enabled patients motivated by their own health concerns to propose ideas and initiate trials, rather than relying solely on researchers and institutions. Some platforms allowed any member, professional or layperson, to start a study.
DIYgenomics, a nonprofit research organisation, used the falling cost of genome sequencing to support patient access to genomic data and partnered with Genomera on crowdsourced studies of vitamin deficiency, ageing and mental performance. Participants shared genomic and phenotypic information through a website that collected, analysed and visualised the data. In 2012, the service was free, with revenue hoped for from referrals, sponsors and analytical services.
Althea Health provided web infrastructure to plan studies and deploy them on smartphones: initiators defined the aim and key parameters, posted an enrolment form and recruited participants, while the company aggregated and reported the data. Patient-oriented sites such as CureTogether and QuantifiedSelf mainly connected people seeking to learn about their health, conditions, other people's experiences and treatment options.