Central to future data sharing [1] plans is the principle of public interest, intended to be underpinned by transparency in all parts of the process, to be supported by an informed public. Three principles that are also key in the plan for open policy. The draft ethics proposals [2] start with user need (i.e. what … Continue reading Ethics, standards and digital rights – time for a citizens’ charter
The world you will release your technology into, is the world you are familiar with, which is already of the past. Based on old data. How can you design tools and systems fit for the future? And for all? For my 100th post and the first of 2016, here is a summary of some of … Continue reading Thoughts since #UKHC15. UK health datasharing.
The Freedom of Information Act has enabled me to stand up for my children’s rights. It really matters to me. And we might lose it. For every member of the public, who has ever or who has never used their rights under the Freedom of Information Act laws, the government consultation on changing them that … Continue reading Act now: Stand up and speak out for your rights to finding out the facts #saveFOI
Parliament’s talking about Talk Talk and Big Data, like some parents talk about sex ed. They should be discussing prevention and personal data protection for all our personal data, not just one company, after the event. Everyone’s been talking about TalkTalk and for all the wrong reasons. Data loss and a 15-year-old combined with a … Continue reading Parliament’s talking about Talk Talk and Big Data, like some parents talk about sex. Too little, too late.
Enabling public trust in data sharing is not about ‘communicating benefits’. For those interested in nitty gritty, some practical suggestions for progress in Building Public Trust in data sharing follows on from my summary after the NIB Bristol event 24/7/15. Trust is an important if invisible currency used in the two-way transactions between an organisation and … Continue reading Building Public Trust [2]: a detailed approach to understanding Public Trust in data sharing
In recent weeks rebranding the poverty definitions and the living wage in the UK deservedly received more attention than the rebrand of the website NHS Choices into ‘nhs.uk.‘ The site that will be available only in England and Wales despite its domain name, will be the doorway to enter a personalised digital NHS offering. As the … Continue reading The nhs.uk digital platform: a personalised gateway to a new NHS?
“By when will NHS England commit to respect the 700,000 objections [1] to secondary data sharing already logged* but not enacted?” [gathered from objections to secondary uses in the care.data rollout, Feb 2014*] Until then, can organisations continue to use health data held by HSCIC for secondary purposes, ethically and legally, or are they placing … Continue reading Reputational risk. Is NHS England playing a game of public confidence?
Patient online medical records’ access in England was promised by April 2015. Just last month headlines abounded “GPs ensure 97% of patients can access summary record online“. Speeches carried the same statistics. So what did that actually mean? The HSCIC figures released in May 2015 showed that while around 57 million patients can potentially access … Continue reading Off the record – a case study in NHS patient data access
Differentiation. Telling customers apart and grouping them by similarities is what commercial data managers want. It enables them to target customers with advertising and sales promotion most effectively. They segment the market into chunks and treat one group differently from another. They use market research data, our loyalty card data, to get that detailed information … Continue reading The Economic Value of Data vs the Public Good? [2] Pay-for-privacy, defining purposes
Demonstrable value of public research to the public good, while abstract, is a concept quite clearly understood. Demonstrating the economic value of data for private consumer companies like major supermarkets is even easier to understand. What is less obvious is the harm that the commercial misuse of data can do to the public’s perception of … Continue reading The Economic Value of Data vs the Public Good? [3] The value of public voice.
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