Don’t talk about patients, without patients

Interview with Bernadette Hendrickx, Scientific Advisor to PFMD, CEO and Founder SAHB Consulting
The ISPOR conference highlights major advances in technology, real-world evidence and patient-centricity but more patient input is still needed.
Patients are increasingly on the agenda at medical and research conferences, marking a clear shift in acceptance – among health professionals, policymakers and industry – that the end user is the key player in healthcare.
The recent conference of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) in Baltimore, US, showed how several trends are converging to move patients centre stage. Technology is decentralising care, giving patients more control over their data, and decision-makers are embracing patient-reported outcomes as a central component of value-based healthcare.
However, ISPOR also illustrated the relatively low number of patients and patient advocates at high-level conferences. More than 3,700 attendees from over 60 countries travelled to the vast conference halls occupied by ISPOR’s sprawling mega-event – packed with keynote speakers and parallel sessions of the highest quality. There were, by most estimates, more patient representatives than in the past, but still too few compared to the armies of regulators, policy experts, and health economists on hand to profess their faith in patient-centricity.
What’s new?
Notwithstanding this drawback, progress in the quest for patient-focused medicine continues unabated. The methodology for determining what patients want, how they value incremental benefits delivered by medicines and devices, and formula for translating this into monetary value were recurring themes.
So too was technology. Digital health was to the fore, intensifying questions over the future of clinical trials as the gold standard for testing whether healthcare products work. In an era of connected health and real-world patient data, the humble RCT is beginning to look a little jaded.
Clinical trials are an industry unto themselves. They have the benefit of history on their side, along with the fact that regulators and industry know how to ensure all the required boxes are ticked. But their long-accepted drawbacks, such as difficulties translating results into the messy, real world of diverse patient populations, are increasingly hard to ignore.
The prospect of assessing products based on real-world evidence, collected in real time from large numbers of patients, is tantalisingly close. Wearable technologies – from bracelets to watches – can now effortlessly collect and transmit data on heart rate, blood pressure, blood glucose and much more. If we are truly interested in patient outcomes, digital monitoring is the future.
Rise of the algorithm
It also promises to unlock whole new fields that will allow use to get more from the drugs and devices we use. Chronobiology, for example, can use patient data to determine when best to administer drugs to achieve optimal results.
Some of this will be highly personalised – just as Amazon and Netflix have built algorithms with an uncanny knack for suggesting products or movies that you might like, the future of healthcare will be informed by data-driven medical advice just for you. The sense from the ISPOR event – and elsewhere – is that patients are becoming ready for this. It is doctors, regulators and health systems that will adapt slowest. More than one speaker noted that tech-driven solutions raise questions about health equality, particularly where the digital divide is widest. Will those without iPhones or Wi-Fi access be locked out of the latest data-driven advances? One solution is to simply provide patients with smartphones – the essential health and wellness device for the 21st century.
Beginning and ending with patients
While ISPOR was not billed as a patient engagement event, it was a timely reminder that patients should be at the top table – not as a token speaker but as an equal partner in shaping an outcomes-driven healthcare system. It was also encouraging to hear from the ISPOR Patient Centered Special Interest Group and PE representatives of arthritis and Parkinson’s organisations.
The big challenges that lie between today and the patient-centred health system of tomorrow include finding ways of including patients in these conversations from the beginning to the end; developing the technical knowhow to make sense of the oceans of data generated by wearable devices; and figuring out to get the most from real-world evidence and RCTs.
In all of these, the answers will feature patients’ voices and digital technologies.