Professor Hamish McLeod is a co-investigator on the EMPOWER study, playing a role in encouraging reliability in research measurement and supporting people using the EMPOWER App. Following recent widely publicised revelations about digital privacy Hamish reflects on how people respond to new technologies and the importance of genuinely informed consent in ethical research.
My family is big on telling stories, usually ones that are mildly funny or slightly embarrassing. One recurring story about my Gran was that as a young girl growing up in New Zealand she could remember when her family home first got electricity installed. Unfortunately, this was not a happy event for her as she was initially petrified that electricity would seep out of the plug sockets at night and harm her.
Fortunately this threat never transpired and she quickly got used to enjoying the benefits of refrigeration and television and forgot her fears.
Although her concerns may seem odd or fanciful from today’s vantage point, her reaction reflects a common pattern seen when people first encounter new technology. History is full of examples of how new inventions bring both awe and fear. For example, the opening of the railway link from Stockton to Darlington in 1825 triggered fears that the human body would be damaged by travelling at the “incredible” speeds of 30 miles per hour.
In more recent times, there have been fears that mobile phone radiation would cause an epidemic of brain tumours and that the internet would eliminate books. Although neither outcome has occurred, many people acknowledge at least passing suspiciousness of new technology. Such fears are common and possibly reflect an adaptive cautious response switched on when our brain’s threat system encounters new or unexpected things.
Concern that technology can be used for evil is also reflected in the bleak predictions of the future portrayed in novels such as George Orwells 1984 and Aldous Huxley’s Brave New World. These are reminders of how easy it is to tap into deep-seated fears of how technology can be used for malign purposes. Even the big tech companies seem to recognise the need to reassure us that they are a force for good.
Until recently Google adopted the corporate code of conduct motto “Don’t be evil” (although they subsequently changed this to “Do the right thing” in October 2015). Sadly, the recent media stories about Cambridge Analytica and the selling of personal data from Facebook accounts have reminded us that we all pay for “free” services with information that can then be used to sell us goods, services, and even (maybe) political messages.
Um…I agreed to what?
The Cambridge Analytica story has flushed out a major issue of how we consent to the use of our personal data when we access services provided via the internet. This has stimulated much discussion about whether we really know what we are giving away when we click on “I accept” during the sign up process for social media sites.
“This restriction will not apply in the event of the occurrence (certified by the United States Centers for Disease Control or successor body) of a widespread viral infection transmitted via bites or contact with bodily fluids that causes human corpses to reanimate and seek to consume living human flesh, blood, brain or nerve tissue and is likely to result in the fall of organised civilisation”
While such examples are relatively light hearted and show that Silicon Valley lawyers might have a sense of humour, it is important that we do not lose sight of the fact that personal information is valuable and should be treated with respect. Hopefully, the alarm bells that are still ringing after the Cambridge Analytica story emerged will help to force commercial companies to take the data protection rights of service users seriously.
EMPOWER and the Protection of Personal Data
But what about digital data collected in health research? In the EMPOWER trial we are using a mobile phone app as a platform that people with psychosis can use to monitor the ebb and flow of their mental life and can then apply this information to learn how to maximise their wellbeing and minimise distressing relapses. The information gathered can be shared with professional and family carers with the aim of making it easier to access suitable help and support when needed.
We know from our initial pilot studies with users of the app that concerns about privacy and confidentiality are at the top of many people’s minds when they are deciding about whether to get involved. Our view is that this reflects the natural human caution about new technologies that may have been heightened by recent media reports. Of course, the precise origin of any concerns will vary from person to person, so the key issue is to provide people with an opportunity to get answers to the questions they have about how personal information collected during the EMPOWER study will be used.
Because EMPOWER is being conducted as a research trial, it is subjected to a very high standard of ethical scrutiny and monitoring. An independent NHS ethics committee made up of people from a wide variety of backgrounds (including members of the public) reviewed all aspects of the research proposal before we could commence the study. As researchers we welcome this as it provides a layer of protection for the people participating and it helps ensure that we do not get blinkered or biased by our own enthusiasm for the app and its potential benefits.
Our study information sheets have all been prepared so that it is clear what data we will collect, how it will be kept secure, and who will have access to it. Instead of running to hundreds of pages, our consent form is only a few pages long and we encourage all people interested in the EMPOWER trial to take their time to read the study information, ask questions of the researchers, and discuss with people they trust before deciding whether to be involved. And we can absolutely guarantee no sub-clauses that refer to the Zombie apocalypse – in our view, informed consent and the right to respectful treatment of personal information is not a light-hearted matter.