This is a story about the Digital Health Workshop held at North Shore Hospital on 30 October. Six of us attended as well as a number of health care workers. Dave deBronkart who is famous in health circles as a strong advocate for a new health care paradigm, is speaking at a number of events in Auckland and elsewhere. 

The photo is of Dave, Diana, myself and a Waitemata DHB doctor.

The internet has changed everything. 

Remember when it was first available in New Zealand? 1996? Little did we know then how our lives would change. 

The internet has enabled us to connect with medical people and each other. The former is slow to develop in New Zealand but the latter has been going on since the internet began. 

Dave deBronkart was already clued up about technology in 2006 (he used the internet before most of us could) when he was diagnosed with metastatic kidney cancer. It had spread to his lungs with metastases also appearing on his head, his tongue, his arm and his thigh. 

Dave wasn't going to take this lying down. He was determined to walk his daughter down the aisle. With the support of a progressive GP, he joined a patient group on the internet where he learnt about a new treatment that worked for some: Interleukin. They also gave him a list of hospitals where the treatment was carried out. To cut a long story short, he was cured.

So slow is the normal run of events that Dave's treatment is still not in the medical literature ten years later. The internet and a strong patient group enabled him to bypass the normally slow progress of revolutionary treatments. 

(I liken his happy ending to the way that immunotherapy like Keytruda, for a small number of people at least, can bring about a good remission when nothing else works for metastatic head and neck cancer.) 

Fortunately for us, Dave's survival enabled him to become a patient advocate. In the ten years since his treatment, he has rebranded himself as ePatient Dave and made educating others his life's work. The "e" is for electronic, yes, but also for Engaged, Enabled, Empowered and Equipped. We can all be ePatients! He thinks this is a good thing for both patients and health care workers. 

An ePatient doesn't say, "There's nothing I can do." She says, "What can I do?" I interpret this to mean that we can make the system work better by working with our doctors, not passively accepting whatever is given us. There won't always be a cure but we can negotiate with health care workers for excellent palliative care, for example. 

On the cover of Dave's book "Let Patients Help" is a picture of him, a computer screen and his GP. They are working together with both of them having access to the notes on the screen. This is the "triangle" that works, he says.

The old model of care is is called "paternalism" because the patient is treated like a helpless child. That disempowers the patient.

Do all patients want to knock the barriers down between them and the information that doctors have about them? There's a movement called "Open Notes" where a study was carried out to see if patients could handle full access to all their health information. According to Dave, only 1% of patients were freaked out. The other 99% wanted to carry on with open notes. 

https://www.opennotes.org/

He said that Wikipedia is an example of how patients can help. You can learn to edit entries and a patient might be able to add a side effect or other patient-reported information not known to the writer.

Dave was wearing pink socks at the workshop as was Dr David Grayson whose department organised the visit. The socks (the moustaches have no meaning) are an emblem of a social movement to change medicine from the ground up. (I have four pairs to give away if anyone wants to join the revolution ...) The movement is towards participatory medicine, the name given to the society Dave runs. 

https://participatorymedicine.org/

Finally, an interesting nugget. In digital matters skills usually filter down from a younger to an older audience. I like the topsy turvy nature of that. It's not like most situations where we older people think we can teach the younger folk a thing or two.

In Dave deBronkart's case though, he tips this concept on its head too. A proud grandfather, he has the latest technology at his fingertips. He'll be there when the "chatbots" take over!

O brave new world,
That has such people in't! (The Tempest, 5.1.182-184)

Maureen

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Diana Ayling

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