Real-World Medicine: The Needs in a Real-Patient World

True patient centricity in the real world is about finding a service that is responsive 24/7 to fit with the challenges of daily life.

Patients are able to have 'face-to-face' consultations with their GP over the Babylon app.



As a working mother with two children and two step children – yes four small people under the age of 8, our lives are that oxymoron of organized chaos where one small error at the start of a day has a butterfly effect for the rest of it. A lost shoe, spilled breakfast, missing approval form for a school trip can be the minor disruption that means I am in a major battle to get to my desk and manage the easier tasks of writing about medicine, drugs and health initiatives. When there’s a 4:49am midweek vomiting incident, therefore, that you know is a side-effect of the medication your daughter takes for a chronic condition but the exam she has worked diligently for the next day will now be missed because the school has an uncompromising infectious disease policy of ‘no return within 48h’ (and there’s a research presentation to 40 senior pharma executives to complete) … well that’s when the truth about ‘real world medicine’ comes to light.

True patient centricity in the real world is about finding a service that is responsive 24/7 to fit with the challenges of daily life.

Increasingly, we learn that patients are now empowered, entitled, and essential in the patient-centric movement; we are told that ‘patients are first’ in the way that pharma conducts trials, communicates and seeks to provide healthcare solutions that are ‘beyond the pill’. Apparently ‘real world evidence’ generated from tools, trackers and digital systems are assimilating to produce a ‘data lake’ that industry may struggle to navigate and harness. But these data are a luxury of academic agonising; in the ‘real-patient world’ what is relevant is how symptoms, side-effects and social obligations can be integrated productively so that we can get back to the everyday carnage of life. When I tried to explain that my daughter’s febrile-induced nausea and vomiting was not a risk to her classmates, the only solution offered was ‘Get a letter signed by a doctor that this is a side effect and then she can come into school and take the exam…’. Given that the consultant runs a quarterly clinic and getting a GP appointment within a morning for a non-emergency makes that impossible (and in good conscience a waste of resources when there are people with acute problems) true patient centricity in the real-world is about finding a service that is responsive 24/7 to fit with the challenges of daily life. Patient access isn’t just about access to drugs it’s about availability to HCPs and help at the point of need; non-emergency flexibility cannot be predicted nor prescribed. But it can be purchased …

I am not alone in these needs; last week, a study by Telecare of 2,535 people (and their carers) living with diabetes described how:

  • 77% of millennials want to use technology to track their family’s health
  • 65% of patients want doctors to incorporate technology into their care plans
  • 55% of people with diabetes communicate with their doctors more often because of health apps.

Indeed, in trying to get my daughter allowed back into class, I sent info provided online by the manufacturer of her treatment to the school’s medical center, I reached out to a known KOL who offered to do a long-distance skype consult and considered joining up to ‘Babylon Health’ such that I wouldn’t have this non-emergency, emergency appointment debacle again. This is digital health epidemiology; proactive, personalized, purchased health in real-time in the real world. Babylon Health is a subscription-based provision of medical services through your smartphone. The doctor is literally in your pocket as payment of £1,000/year guarantees you 24/7 availability with a physician and responses to frequently-asked questions are provided within an hour. If I had been a member I could’ve had that crucial ‘letter from a doctor’ to satisfy the black/white interpretation of a vomiting episode in the real world of managing a chronic condition where there are side effects, poor compliance and co-morbidities exempt from the clinical sterility of a clinical trial or the inconvenience of seeing a medical expert once every 12 weeks.

I woke up feeling really unwell. Usually I would have to compete for an appointment when my surgery opens first thing, instead I booked a ten minute video consultation at eight o’clock and picked up a prescription during my lunch break. Why would I ever do anything else?”. 

Ali Parsa, CEO, Babylon Health.

In environments like the UK where there are 1.5 million consults every 35h within the National Health Service, this patient-centred approach makes Babylon Health an affordable and desired alternative and it is also a resource filtration – eliminating everyday episodes from overburdened clinics. The CEO, Dr Ali Parsa, explains the founding principle that “being ill is difficult enough, getting healthcare shouldn’t be” and members praise the experiences with anecdotes such as, “I woke up feeling really unwell. Usually I would have to compete for an appointment when my surgery opens first thing, instead I booked a ten minute video consultation at eight o’clock and picked up a prescription during my lunch break. Why would I ever do anything else?”. One Mother explained, “I am a full-time working mum juggling a busy schedule. My employer offered Babylon as a benefit. Babylon provided a convenient and flexible way for me to consult with a GP about my child without having to take a day off work.”  

Whilst this is a commendable system for today’s needs, it is more intriguing when we consider what’s next and what’s possible with the data that personal health systems like Babylon Health gathers and garners. Dr Parsa enthuses about the potential for personal data to be aligned with population data from other members and the public to generate outbreak maps. This is health meterology and offers innovative ways to accept, comprehend and apply the insights of ‘real world’ data such as adverse events from treatment for chronic illness.

We need to rethink the way we relate with patients entirely. We have to start by altering our perspective on how we engage with patients – to stop being afraid that if we use social media to determine how our drugs perform in the real world, we will face an avalanche of AE reports that will mean drugs are pulled. Because we have to analyse this in a smarter way.

Companies like Celgene, are keen to capitalize on health meteorology and a paradigm shift in conceptual thinking about what signals from socialzsed data assembly can tell us about a drug’s real-world utility. David Gillen, Head of Patient Safety at Celgene is impressively candid about how pharma has to re-think what patient centricity is and what the industry must do to ‘be real world’ – he explains, “Industry has not done a good enough job in the way it communicates benefit/risk to patients.We don’t really respect or acknowledge that the way we communicate and treat patients has been poor. The way we produce patient information – like pill packaging, trial support etc – is dire. We need to rethink the way we relate with patients entirely. We have to start by altering our perspective on how we engage with patients – to stop being afraid that if we use social media to determine how our drugs perform in the real world, we will face an avalanche of AE reports that will mean drugs are pulled. Because we have to analyse this in a smarter way. Every AE or even side effect of a drug for a patient is important as it tells us something about that drug and better informs us about the impact of a condition on someone’s life. Within our own walls we need to persuade our colleagues in pharmacovigilance that the information we gain via such routes is not a threat to be managed but an insight to be gained that actually protects the way our drugs work and builds an integrity between us and the patients who use our products. We need to stop thinking about ticking boxes that area about PROs as Patient Reported Outcomes and evolve our engagement to be Patient RELEVANT outcomes … perhaps even Patient RESPECTED outcomes”.

With the composite of pharmacogenomics and technology on the horizon, we will soon be able to be more personal with medicines – to predict which patients are vulnerable to conditions and to then start to specify which of those patients are the most likely to benefit or experience side effects from the different variants of drugs available within the same class or different classes. That’s where we should collaborate more innovatively using technology. Pharma has a deluge of patient relevant data heading its way and we need to compete against disease and the trials of everyday life rather than each other to get better outcomes for patients. And so that working parents are able to get to their desks to write articles like these!


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