Over the holidays I caught a BBC Radio 4 item about the days of the touch typist. It was one of those gems of broadcasting which looked through a narrow lens to tell the listener much about how the world has changed. It also brought back many memories of my time as a messenger at the old Department of Education delivering brown envelopes – many of them with a red flag meaning it was from the Minister’s office – to the typing pool. About the same time my Dad (who was a schools inspector) got one of the first computers which sat in the corner of his office at the DofE in Arthur C Clarke fashion. Indeed, I am not too sure who was more afraid of it – him or me.
Since then there has been an ‘information revolution’ of course, And it just so happens that this is the title of the Department of Health consultation about information use and access in the health service to which AMRC has responded today . We have made the following key points:
- Research is central to the information revolution’s aspiration of delivering broad benefits to patients and society through improving access to information.
- We welcome the government’s ambition that by 2015 “The quality and scope of information available for analysis and research will be considerably higher, more comprehensive and based on accurate recording.” and urge the government to work with us to ensure the information revolution can deliver this
- Confidentiality and security must be central to the revolution to underpin patient support for the use of their data
- Issues around the use of identifiable patient information in research must be addressed.
- We urge that the recommendations of the Data Sharing Review and the ongoing work of the Research Capability Programme and Health Research Support Service be included in this strategy.
- More focus is needed on informing patients to understand how their data will be used and supporting them to find out about research opportunities open to them.
The truth of the matteris that good information useage and good communication rely on sound leadership from the top – in this case Ministers.
As we finalised our response this week, the irony was not lost on me that the Department should be seeking views on this issue shortly after a Christmas period in which it was roundly criticised for not pursuing a public information campaign on flu vaccination. Why is it that, in this information age, all Governments wantonly cut back on communications, marketing and information activities? Ultimatelyit can only short-change patients.
I sometimes think that when politicians become Ministers they forget that they have become heads of ‘corporate’ beings. Good communications is vital to whatever service their Department is delivering. They neglect it at their peril – a lesson learnt by most businesses long ago.
For those wanting to get a grasp of some of the issues around the NHS White Paper ‘Equity and Excellence: Liberating the NHS’ of which the ‘Information Revolution’ is just one aspect, I encourage you to read yesterday’s House of Lords debate. What would we do without the Upper House I ask myself?
It being the end of the week I should perhaps mention several other interesting bits of news from the last five days…
First, the data sharing agreement announced by the Wellcome Trust and other research funders.
Second, a union of national importance on the scale of William and Kate it may not be, but this week the Association of British Healthcare Industries (ABHI), Association of British Pharmaceutical Industries (ABPI), BioIndustry Association and British In Vitro Diagnostics Association (BIVDA) announced the formation of LifeSciences UK to facilitate joint-working between different parts of the healthcare industry and strengthen their voice with Government.
And, third, this item about Cancer Research UK setting up a c-team of experts composed of four world-class research groups to launch a new blitz on cancer by targeting rogue stem cells that cause tumours to spread and become untreatable.
That’s it this week from the A-team.
One thought on “Getting touchy over the information revolution”
Elisabeth Pisani talked about some of the issues of data sharing on one of the ‘Strange Quarks’ podcasts, which I recommend. She also highlighted that patients consent to all sorts of prodding and questioning and it’s a shame that data is sitting on someone’s computer for months / years before the findings are written up and published.