Australian medical researchers will begin trialling a data sharing and privacy platform which will allow them to access patient data from wearables and social media to aid healthcare research and pharmaceutical development.
So far St Vincent’s Hospital, Cancer Trials Australia (CTA) and Melbourne and Neuroscience Trials Australia, have signed on to take part in the MediaConsent Medical Project.
MediaConsent is a platform created by ASX-listed technology company Shareroot which gives consumers control of their data and privacy through a preference and consent management dashboard.
The medical project is being led by The Social Science, a specialist STEM digital agency acquired by Shareroot in April 2018.
“The value of data in medical research is only growing as we find better ways to access and use data,” said Michelle Gallaher, MD of The Social Science and leader of the MediaConsent Medical project.
“I’m really pleased to see MediaConsent applied to accelerating medical research and opening new ways for patients and carers to contribute to research by donating their data.”
Gallaher described MediaConsent is a type of ‘middlewear’, “a rights management platform that can give digital health developers, data creators, aggregators and users piece of mind because it ensures compliance with tighter laws and regulations around data. This is a new era of data rights and MediaConsent is a practical, simple solution that puts control into the hands of the consumer (or data creator).”
Clinical cancer trials
Through the collaboration, Cancer Trials Australia wants to support greater engagement and understanding of patients who are participating in cancer clinical trials.
“We recognise the changing interest and value placed on real world data and real world evidence by both global regulators and the biopharma industry in shaping new treatments and products,” said Kurt Lackovic, CEO of CTA.
“A platform like this could really democratise and transform clinical trials, enabling so many more people to participate in research, particularly from remote and regional areas or migrant populations that find it typically difficult to participate in clinical trials.”
The platform provides the opportunity to enrich studies with new kinds of data from patient’s social media profiles which could help understand a their lived experienced with an illness, condition or injury.
Gallaher explained the reality of taking a new drug can be very different to the experience reported to doctors and nurses, with patients often under reporting adverse and positive side effects.
Gallaher told Which-50, “Clinical settings are just that – clinical, and don’t much resemble the way patients and their carers behave and operate in the real world. We can see that a huge proportion of the population share health information, attitudes and opinions to their social media profiles and these small data crumbs may be very valuable to researchers.”
The MediaConsent Medical project kicks off with all MOU collaborators on February 1, 2019 in Melbourne, to determine how clinicians, researchers, healthcare administrators, digital health developers, patients and carers want to access, aggregate, analyse and control health data.
What exactly researchers find useful and what consumers are OK with sharing will become clearer during the MOU period, which is expected to be completed by September, Gallaher explained.
From there modifications will be made to the platform based on insights garnered during the MOU period followed by a wider commercial rollout.