Patient Experts

Patient-centricity is the holy grail of modern healthcare and digital health solutions. In reality, most clinicians are focused on their patients and sometimes new technology can get in the way of doing that by increasing the time spent in front of computers and less with their patients.

Thus, we as digital health proponents must continue to make tools that are patient and clinician centric, as the main target – within a healthcare episode where the doctor and patient meet in person – is this collaboration.

However, feeling connected to our healthcare teams, even today, continues to fall short of what it needs to be. Our solutions must be spread across the healthcare spectrum, from tackling the patient visit to self-care tools and sometimes acknowledging that some patients are “experts” in their own disease.

The list of things to get right are long and dependent on the specific people involved. The argument is, therefore, one cookie-cutter solution in one setting or context may not work in another. Thus a thorough “user-needs and requirements engineering” exercise should occur in which both clinicians and patients are observed, surveyed, studied and used as testers, when developing a brand new piece of technology.

There are some examples of successful technologies based on this process, such as from the Now Healthcare Group, working alongside the NHS who have come up with a plethora of tools that help patients access better healthcare for themselves. They state:

“One in ten patients never or almost never get to see their preferred doctor.”

Their “Now GP” mobile app puts the control back into the hands of patients by allowing them to choose their preferred healthcare professional, allowing for a sustained sense of continuity of care. The tradition in the NHS used to be that any patient would usually be seen by the same doctor, most of the time.

This is certainly not the case today. This lack of continuity is a problem. The Now Healthcare CEO and founder, Lee Dentith, describes their process of doing a thorough “stakeholder” analysis before coming up with Now GP:

“in the early stages of developing our smartphone apps we spent a long time conducting extensive market research and analysing feedback from our beta-testing stages to ensure we were giving customers exactly what they wanted.”

 

On the flip side, whilst organizations such as Now Healthcare are developing tools that aid in mending the healthcare work flows for relatively healthy populations, solutions for those in most need, such as the chronically ill are having to find their own, often risky approaches, as reported on the BBC News a few days ago.

In the report, parents of type I diabetic children and other diabetic sufferers took it upon themselves to cobble together an open source solution to the current expensive and frustrating method of monitoring their disease. Traditionally, this is based on having to take repeated blood samples for glucose monitoring many times in the day, then having to be very precise with insulin injections – which if administered incorrectly, could be fatal.

The highly risky technology involves using an open source (free) platform called “Nightscout” which is run by a type I diabetic community, a DIY transmitter and a CGM (Continuous Glucose Monitor) allowing patients and their care givers to send their BG (Blood Glucose) measurements to the cloud whilst providing freedom to live a more normal life. One such parent, Mr. Samuelson put together a device for his son, George:

“I am using open source software to do calibrations. Open source software is giving me final numbers and it is not an approved algorithm – it’s not going to be exactly the same as the proprietary algorithms,” he says.

“But you have to make an informed decision… compared to all the other risks the benefits massively outweigh them.”

 

Other unregulated pieces of kit exist, such as Open APS (Artificial Pancreas System) which helps 85 people manage their diabetes with working parts that include a Raspberry Pi microcomputer.

This desperate move by some of the patient population even in developed countries, shows the health inequalities in terms of the most vulnerable patients. The diabetes charity JDRF understands this need and is even trying to develop regulated solutions themselves, but offers caution to users of these open source self-developed systems:

It’s important to add that many of these open source systems available are unregulated. They are not yet subject to the stringent testing and assessment required before they can be approved for use by people with type 1 diabetes.”

However, Dr. Joyce Lee from the Night Scout Foundation, which is based in the US, says:

“I’m a big proponent of the idea that patients are the experts of their own disease and … created tools they need for their own daily management. What the tech has done is allowed healthcare to become participatory but the healthcare system has yet to become comfortable with that,”

 

This active participation should be the actual focus for “Patient-centricity”.

THE AUTHOR

Syeeda Farruque

Syeeda Sanchita Farruque has an MBBS in Medicine from the UK and has worked in health promotion for a specialist registered charity: BAPAM (The British Association for Performing Arts Medicine) which tied in her many years as a performing and recording artist with health promotion education. Having been in a band that supported Sting in his Brand New Day tour in 2000 representing a high point in her performing career, she has returned to healthcare by completing her Msc in Health Informatics at the Karolinska Institute in Stockholm and is currently looking for meaningful work in value-based personalised and precision medicine. Her focus is to harness her abilities to be part of the team that moves solutions forward, safely and effectively, so that patients - the heart of the issue - can benefit the most

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