Last week I attended the The Association of Regulatory and Clinical Scientists to the Australian Pharmaceutical Industry (ARCS) conference. The conference is a professional development opportunity for scientists (be they doctors, nurses, pharmacists, researcher scientists or software developers) who work in the pharmaceutical or medical device industry-including in the regulatory sphere.
The theme of the conference was “Putting patients at the centre of healthcare”, and it was heartening to see ARCS starting to walk the talk by awarding 17 consumer scholarships to cover 17 non-professionals with an interest in this area for full conference attendance. Thanks to ARCS for this opportunity and for making us so welcome-the ‘Consumer Lounge’ in the trade display hall was a really nice touch too.
Some random observations:
In general there was a real openness to consumer perspectives but this is still very new territory. Patient-centricity, patient engagement and empowerment are all the buzz but they are used in many different ways to mean wildly different things. The presenter from Google Cloud waxed lyrical about empowering patients by providing an App that would tell you that you hadn’t walked 3 miles that day and/or that you ate a muffin at 1pm. N’ah surveillance isn’t my idea of empowerment, thanks all the same. This slide looks ethically worrying to me:
The level of intrusion and sheer volume of information that can be amassed about you sounds like a recipe for discrimination and profiteering without adequate safeguards.
In general the technology with us or ‘almost’ with us is outpacing the ethical frameworks. Do you know where and how the medical data from your diabetes apps is stored and treated? It was pointed out that the business model for most app developers were built around the sale of data.
It was encouraging to hear from PBS representatives that they are very interested in hearing patient stories and about the qualitative impact of new drugs on patients’ lives. It was noted that the platform for input didn’t really encourage this. I perceive that both government and industry are recognising ‘patient’ power, I’m not sure that us patients are as smart about using that power as we could be.
I saw a number of slides like the one below, the patient in the centre of a ring of connected ‘players’, no doubt trying to embody the ‘putting the patient at the centre theme of the conference but it’s worrying that the patient is adrift whilst everyone else is connected and the arrow is only going one way-the patient is being acted upon. A telling visual representation of our lack of agency. I’d like to see us as ‘patients’ step up and change this, it’s our health, how do we make sure that we can impact upon academia, industry and the healthcare system. I think it’s a united we stand divided we fall thing so how DO we get a more unified voice?
Fortunately the ‘patients’/consumers at ARCS were neither passive nor lacking agency, what was particularly great was the response to our presence and input at this conference
“So good to see many of you at the conference. My name is Shanny and I am the CEO of ARCS Australia. I think having patients, consumers and carers at the conference was awesome and added a whole new dimension – I so loved how you stood up and asked questions, challenged folk and made your presence felt. Very proud of you and very proud of ARCS members.“
In this brave new world of big data and personalised medicine there are lots of opportunities and threats, here’s to more opportunities for us to work together as patients and with the other stakeholders, whilst reminding them that there should be ‘nothing for us without us’!Tweet