Few would argue with DNA-testing company 23andMe’s mission to help people access, understand and benefit from the human genome. It is a noble aim and in many ways, one that we share at Thriva – that people should be empowered with information about their own body, be that through DNA or blood, and enabled to take action to improve their health.
However as news was released last week about the company’s $300m partnership with GSK, the response was at best scepticism and in some cases outrage. Inflammatory headlines sparked privacy concerns. In response, the company has established, alongside other DNA-testing companies, new voluntary guidelines for sharing customer data.
This is a highly topical and thorny issue – in a post-Cambridge Analytica world, consumers are becoming increasingly aware of the fact their data is being used, whilst simultaneously being relatively ignorant of what data exists about them and how to take control of it.
I would council the need for a rational view. Data is the most powerful asset we have in empowering individuals to maintain their own health and in establishing a truly preventative healthcare system, but we are at the beginning of a long road.
It is a shame that this story has come at a time when consumer concern about data privacy is high and interest in personal tracking and at-home health is so nascent. Trust is vital to the at-home and health-tech industry and it is something Thriva (and other startups in this space) are working hard to cement.
There has always been an argument for using personal data for the greater good but that simply won’t wash with the general public anymore. Organisations handling data need to take more responsibility. While we must continue to build trust through transparency and learn from mistakes, we cannot let stories such as this dent progress.
The data opportunity will only be fulfilled if we’re taking consumers along that journey with us and that will come, in part, in the form of improved communication.
23andMe claim they were transparent about their use of customers’ data from the beginning and there is a clear opt-out system, but perhaps this didn’t go far enough. At Thriva, we collect data about people’s bodies through blood markers and we are open about what we collect and how we use it. Companies like ours, which are set up to handle sensitive consumer data need to be as responsible and transparent as possible at the very start. It’s our responsibility to remove as many shades of grey as possible.
This approach benefits businesses and the people who use them. It will be the new status quo.
Take a company like Monzo, which is radically disrupting a traditionally risk-averse industry with its new model of banking. It has established a policy of maximum transparency across the whole business and particularly when it comes to data breaches or technical issues. It currently has a Net Promoter Score (an index that measures the willingness of customers to recommend a company) of 74, HSBC by comparison is -14.
Companies like 23andMe have a bold and human-centric mission but they are also data companies and the information they gather is important to help progress research in healthcare.
So instead of bemoaning the fact they are selling out to drug companies, perhaps we should be looking at how we can make better use of their assets, requiring companies to behave transparently and work together to address the issues around consumer trust and understanding.
In the UK, the NHS is a ‘single payer system’ which gives us one homogenous data set. This data could provide our map; our guide and rulebook for a preventative healthcare system, but we are playing around the edges of what could be achieved, if only it lived in an intelligent way.
Simply put healthcare policy makers are only going to pay attention once credibility and trust are established. With the appointment of Matt Hancock as Health and Social Care Minister, many are hopeful that technology will play a leading role in future policy decisions. I’m sure I’m not alone in publically saying, if Matt Hancock would find it useful, we’ll gladly open up a dialogue to share what we’ve learnt to-date.
We have the very real opportunity to improve the lives of millions of people by making good on the promise of proactive, participatory health. This is not a shift that will happen overnight and the pace of change will be determined by how the companies at the forefront of innovation behave. If we act responsibly and transparently deliver actionable, contextual information then we will be supporting the progress of this shift, not contributing to fears and concerns. Only then will we see real progress.
Hamish Grierson is CEO and Co-Founder of Thriva, the preventative health-service offering finger-prick blood tests you can do at home.