e-Patient Dave: Maximising the patient as a resource

Upon receiving some extremely difficult news about his health, Dave deBronkart’s pathway into patient advocacy was stark.
 
‘In 2007, I discovered I was almost dead with stage four kidney cancer,’ deBronkart – known to many as e-Patient Dave – told newsGP. ‘The median survival rate was 24 weeks.’
 
Although the process that followed was long and challenging, deBronkart’s story had a happy ending.
 
‘Six months later, my treatment had finished and [the doctors] said I beat it,’ he said.
 
In the course of his diagnosis and treatment, deBronkart also forged a new method of being a patient, a method he credits with a major role in his recovery.
 
‘One of the factors in my survival is that rather than sitting back and expecting the doctors to do everything, I chose to get involved and find out what I could do to help my odds,’ he explained. ‘And this is what we call being an “e-patient”, empowered and engaged.’
 
deBronkart is from the United States with a background in high-tech marketing, but today travels the world as a published author, keynote speaker, health policy adviser and advocate for patient engagement. He talks to practitioners and their patients about how his experience can be used to benefit others in healthcare.
 
When he received his cancer diagnosis, deBronkart’s GP alerted him to an online community of patients with kidney cancer. This proved invaluable, as it was from this community that deBronkart learnt about an early immuno-therapy called high-dose interleukin-2. The official literature on this treatment was daunting, showing that it only worked for 10% of its patients and resulted in death another 4% – but that literature was 20 years old. In the meantime, the kidney cancer patient community had been following patient treatment experiences, recording more up-to-date – and more positive – results.
 
After conducting his research, deBronkart was accepted for treatment at the Beth Israel Deaconess Medical Centre in Boston. Although the high-dose interleukin-2 was extremely hard on his body, it also eradicated his tumours. Despite this journey, deBronkart is careful to emphasise that being an e-patient does not mean being anti-doctor or anti-science. Far from it, in fact.
 
‘It’s not about overthrowing physicians. It’s about being an active partner with them, sharing the work,’ he said. ‘Physicians have been saying since the 1970s that patients are the most underused resource. So the question is, how we can we develop patient skills so the patient can be a productive partner?
 
‘An e-patient is one who is actively involved in every way they can be.’
 
However, this does not mean deBronkart expects all patients to be competent medical researchers; many will need coaching and assistance. But he is also aware that busy GPs are unlikely to have time to offer this kind of help in the space of ordinary consultations. Instead, he suggests utilising additional resources.
 
‘Some practices in the US have an online patient community, like a Facebook group, where patients can coach each other,’ he said. ‘What happens then is you elevate everyone’s knowledge.’
 
e-Patient Dave was a keynote speaker at the Health Informatics Society Australia conference in Brisbane earlier this year. Click here to view his live presentation.

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