Activating the Caregiver – The Overlooked Lever in Healthcare

Activating the Caregiver – The Overlooked Lever in Healthcare

The intrinsically motivated caregiver (or circle of care) is one of the most powerful tools we have in the digital health toolbox.  And yet it has little or no focus.


As you may have noticed in previous blog entries, I’m a huge supporter of engaged patients and have posted previously on my (and my wife’s) epic journey through the health system in Australia.

@ePatientDave is absolutely right when he says that ‘the patient is the most under-used resource in the health system‘.  Health systems would do well to heed this advice, and to move beyond cheap ‘patient-centric’ rhetoric which involves no substantive change to their existing approach.  As I’ve said before, if understood correctly, the changing dynamic between patients and health providers can be thought of as a ‘healthcare reformation’, dramatically altering the traditional power balance in the clinician-patient relationship through the democratisation of medical knowledge.

Although I believe that @ePatientDave is right, I also want to add to what he says.  You see, it’s not just patients that need to be engaged and empowered…

Every day, right across the world, hundreds of millions of hours are spent by relatives and friends in caring for patients in various states and stages of disease and sickness.  Whilst a growing number of patients are engaged, many are incapable of ever being fully engaged.  Many patients are too sick, too old, too infirm or are struggling with mental health issues.  And this was my personal experience – when my wife was acutely ill and bed-bound with the extreme nausea of hyperemesis gravidarum during her two pregnancies, she wasn’t physically capable of being an engaged patient.  She was too sick.

This is where I believe that the engaged patient debate overlooks a vital component that will be key to the design of our future health system.  The caregiver.

In addition to engaging and empowering the patient, we need to activate caregivers, or more accurately, the network of caregivers that provide day-to-day support to patients.  This network, which is becoming known as a patient’s ‘circle of care’, has a strong motivation to ensure that the patient gets better or remains well, and can be used to improve levels of care plan or medication adherence.

Our current health systems barely acknowledge the existence of this highly motivated, hard working group.  Very little information is made available to the ‘circle of care’.  Almost no digital tools exist to support them.  To date, models of care have barely noted the existence of the ‘circle of care’.

But here’s the thing…  The circle of care often has the strongest motivation of any party to keep a patient well.  When a patient is too sick or infirm to speak for themselves, caregivers don’t give up.  When a patient doesn’t feel like they can fight any more, their caregivers don’t give up.  They encourage a patient to keep on going.  When a patient is struggling to adhere to treatments and medications that come with a heavy burden, caregivers are there to act as encouragers and motivators.

Used correctly, the circle of care should be the first line of defence for the health system, offering early intervention and doing their best to keep a patient out of more expensive forms of care.

The intrinsically motivated caregiver (or circle of care) is one of the most powerful tools we have in the digital health toolbox.  And yet it has little or no focus.  Health systems continue to pour money into eHealth, driving supply side efficiencies for health providers.  Through digital health technologies we now face a new opportunity – to recognise and support the circle of care as part of our new, digitally-enabled models of care.  To activate the caregiver.


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