London, UK – October 10, 2017. Medical research can move from good to great if families affected by a rare disease are treated as partners in the clinical trial process, argues a Raremark white paper published today.
It has been about ten years since the first pioneers used the internet to advise patients directly about clinical trials, rather than relying on doctors alone to convey the information.
Despite the promise of the internet, the journey has not been smooth. “The first campaigns direct to patients were a little adventurous, with poor understanding of the conservative environment of trial recruitment,” said Julie Walters, founder of Raremark.
Recruitment companies have since learnt how to reach patients effectively online. The self-referring patient has emerged as someone more likely to learn about clinical trials searching Google than from their own physician.
Raremark’s white paper, The emergence of the self-referring patient: Lessons from ten years of direct-to-patient recruitment, outlines key influencers of success in the age of the empowered patient.
“Thankfully patients now have a way of finding out how to take part in medical research, without relying on doctors as the only gatekeeper,” added Julie. “Google, Facebook and trusted patient communities are powerful information channels, and about time too!”
Raremark’s goal is to transform one million lives in rare disease. Our community managers connect families worldwide with up-to-date scientific information, community insights and research opportunities. Raremark is privately funded and headquartered in London, UK with an office in Boston, US. The company was founded by entrepreneur Julie Walters after seeing first-hand the isolation experienced by families affected by rare disease.