Personal health data ownership, the patient voice, and home-based clinical research were recurring themes among thousands of health industry professionals meeting in San Diego in late June 2019 for the Drug Information Association (DIA) 2019 Global Annual Meeting – a major league confab on what’s happening in healthcare product development and biotech research.
Focus on Data
As with many other annual meetings this year, the opening DIAmond session took on one of the big questions in a world of ever-increasing troves of data and the growth of artificial intelligence and machine learning in health: Who owns my data? Craig Lipset, MPH, formerly of Pfizer, led a panel of experts to delve into this question, looking at what patients want, how data is handled and how regulations are changing in the face of privacy breaches.
Later sessions during the meeting discussed wearables and other ways of remotely capturing patient data, but Harlan Krumholz, MD, a panelist during the opening DIAmond session, noted how data gathering in clinical research is changing.
“I think the future of research is going to be siteless, digital, much more comprehensive, and it will be in real-time,” he said. “I think we’re on the cusp of a very different paradigm.”
With this remote data capture, panelists return to the original question of how that data is handled and who owns it.
“There’s a common theme in discussions about health data and healthcare writ large,” said Deven McGraw, JD, LLM, MPH, panelist and Chief Regulatory Officer of the technology start-up Citizen. “Patients are tired of being on the sidelines. They want control and a voice in matters related to their health.”
Spencer’s Chief Scientific Officer, Alan Menius attended DIA and had this to add; “I would contend that it’s not just ‘who owns the data’ but ‘who stands to benefit and how’. We all know that the future of healthcare depends on using combined healthcare data from across healthcare silos but we haven’t worked out a way where all benefit and patients are protected from data misuse.”
It is well-known that healthcare has operated in silos for decades, and a major movement within the industry, especially in light of technology advances, is to increase collaboration. The opening keynote session during DIA covered how scientific advancement improves population health and the need for collaboration across stakeholders to have the most impact.
Collaboration with patients is also a growing movement and one that has been seen at other meetings addressing drug development and clinical research. An entire track was dedicated to patient engagement, discussing strategies to bring patient voices into the research process early and how to keep patients at the center of healthcare advances and technological developments.
Patient centricity is also a key focus in clinical trial development, with sessions covering protocol development, the patient experience in trials, recruitment, and patient-reported outcomes collection. An interesting session examined how disruptive technologies are transforming research, covering wearables, AI, machine learning and blockchain. Multiple sessions looked at the use of wearables in patient care and clinical trials. Yet, another session went even further to “invisibles,” which collect data without compliance issues or asking patients to take actions.
The Future of Research
It’s clear technology, data and patient engagement are changing the face of clinical research. Spencer Health Solutions was at DIA 2019, roaming the exhibit floor and introducing people to spencer. The spencer® Smart Hub is a full circle solution for clinical researchers, administering medications, collecting ePRO data and providing a communication link to the study team.
If you missed us at DIA 2019 you can download our latest whitepaper co-authored by Chief Scientific Officer Alan Menius and Exploristics CEO, Adain Flynn. “Better Adherence, Higher Engagement: Finding the Clinical Trials Sweet Spot” gives an inside look at how medication adherence through patient engagement can significantly impact clinical trial success.