Begonya Nafria, Patient Advocacy Manager in Research at the SJD Barcelona Children's Hospital, presented a webinar on the use of social networks to develop rare disease clinical research projects as part of Partnerships in Clinical Trials Digital Week. Watch the full webinar presentation, as well as six other on-demand webinars here.
Running clinical trials for rare diseases can often exaggerate many of the challenges facing the rest of the research industry. Geographical dispersion and low prevalence of patients means that both recruitment and building networks between clinicians can prove particularly difficult.
As both Patient Advocacy Manager in Research at the SJD Barcelona Children's Hospital and a coordinator of the European Young Persons' Advisory Group (eYPAG) network, Begonya Nafria spends a lot of time tackling these challenges and is an advocate of the use of online technology and networks:
'The internet gives us the opportunity to reach patients and clinicians without borders. Moreover, parents of children with rare diseases develop considerable expertise and are advocating for formal collaboration in research.'
In this presentation, Nafria looks at how to involve social media in healthcare and clinical trials, the cost/benefits ratio and the ethics of using it for patient recruitment. Using real-life examples she explores where social media and other technologies have already been used successfully.