Last week UK academics and representatives from the NHS and a couple of young people gathered at the House of Commons to take part in a panel run by GlobalNet21 on how we should approach meeting the healthcare needs of Generation Z. More meetup than formal consultation, I quite welcomed the unexpectedly random circumstances that gave the evening a more informal feel then you would expect: the Sri Lankan concurrent event which meant we spent ages in a very busy security queue outside, the change of room, the constant division bells for MP participation and the lack of attendance of perhaps the star of the show, the MP Lisa Cameron (SNP), herself.
None of that mattered much in the end because I was able to catch enough of the opener, the setting-the-scene Q&A between Dr. Sarah Lewis, Research Associate on the Digital Health Generation project, and two young people, Jack and Alex, and heard what they had to say about how Generation Z finds and uses healthcare information. The most important point they highlighted was the difficulty in finding information that they can trust. It was clear they feel they are navigating through all sorts of unfiltered information and it isn’t easy to find credible experiences as sites/apps aren’t advertised adequately. They noted the danger of winding up in bubbles of misinformation but seemed aware of this and clearly had started to craft strategies to mitigate its risk. To form fairly confident decisions, they reported having to constantly check with other sources in order to root out healthcare’s equivalent of fake news. In particular, they called out finding the experiences of others on YouTube as a key place to find information in a way that is not only trustworthy but engaging.
This was perhaps the most important point for me in the session and Hazel Jones, Director of Apps, Wearables and Uptake, NHS Digital, picked up on it and said that she agreed they needed to do more to reach young people through vloggers and were testing concepts using ambassadors. For me, this was the gold nugget I would take away from the event. In my own work researching perceptions around the patient journey, from symptoms, through diagnosis and then onto experiences on treatment I am often staggered by the hugely personal stories shared online by patients themselves and the way online relationships make all the difference to the quality of their lives. As an example, survivors in breast cancer tell others not to Google, not because they don’t want them to find information for themselves, but because oncology data moves so fast, what they are likely to find is already out-of-date and can even cause panic. Here, more than ever, this role of peer-advisor approach is critical. It is on the level of life and death itself, it’s that important.
Unfortunately, the subsequent conversation was directed mostly at healthcare apps. This was a shame as I didn’t see much evidence that Jack and Alex found them particularly valuable. The room was full of people who wanted to mention the buzzwords of big data and IoT and so we got carried off on a discussion on what sounded like what young people clearly want is to be able to track their data, huge amounts of it, and probably all the time. Dr. Emma Rich, Reader/Associate Professor in the Department for Health at the University of Bath tried to reel this in by saying this probably isn’t the future we should be imagining. There are mental health issues that can arise with an overzealous tracking of personal minutiae that we are best to avoid.
Emerging technologies clearly have a key role to play in this but we just need to find better ways to help people find each other to share experiences, and perhaps this is especially true for Generation Z. In this event we only briefly touched on some of what I think are the most important issues. Continuity of care was noted by Professor Andy Miah, PhD, Chair in Science Communications & Future Media, University of Salford and this is of critical importance in accessing services when you live a mobile life, for example, say at university for half the year. You could add digital literacy to that list as well as the emerging consent literacy which we all could use help with.
From my perspective, certainly in our own work at W2O with patients and clinicians, the gaps we see most are not in the technology or the capturing of the data. Where most work needs to be done is around what do the new signals we see in healthcare data actually mean? A cardiologist told me recently that he only wanted to know about a new diagnostic biomarker if it leads to a clinical decision. Whilst it might be interesting from a scientific perspective, it ultimately was just not very useful. Without a sense of what fundamental healthcare behaviours we need to encourage and without the medical evidence to really understand what data points support these over time, we won’t be able to make all this fascinating new data ‘work’ for any of us.