Your NHS Medical Records – and the automatic opt-in

You should by now have received a leaflet through the post (click here)  about how the government intends to share YOUR personal health data with a variety of ‘approved’ (but unspecified) organisations and ‘researchers’. The leaflet came without an envelope and  will probably  have arrived with a lot of other leaflets for pizza deliveries and cheap sofas and you will probably have thrown it away unread.

 THIS IS A SERIOUS MISTAKE.

Because, as the leaflet tells you, “If you are happy for your information to be shared “(or if you have thrown away the leaflet unread) “you do not need to do anything. There is no form to fill in and nothing to sign.” In other words – you have opted into having your full medical information shared with whoever the government decides appropriate. Or indeed, anyone who breaks into the HSCIC secure system. 

Now the first thing that worries me, is why is there no form to fill in and nothing to sign?  The government are leafleting every household in the country,and  the form could easily have contained a simple opt-in slip that you could fill in and take to your GP.  After all, almost everything in this country that’s not compulsory requires an opt in – from electoral registration, to becoming an organ donor. If the government wants to start a trend for opting-out rather than opting-in  why don’t we start with one or both of these?  

The answer is, of course, that  they really want your information and so they are relying on your apathy as much as a mobile phone provider or an energy company would be.

The second problem I have is are we identifiable through this data?   While the leaflet is a little vague, when you check at the parent NHS website they are linking “your date of birth, full postcode, NHS number, and gender.. to link your records in a secure system”.

Date of birth, full postcode, NHS number and gender? Bingo! You could identify me that way, no problem. ( And ‘secure system’? Perlease. Does the name Snowden still mean nothing?)

Don’t get me wrong,  theoretically I think NHS data sharing is a good idea. My family suffers from a vile hereditary condition that has been passed down through four or five generations and is set to continue for the forseeable future Nothing would please me – and people like me – more than if a responsible state used our medical data for responsible research to ameliorate our  current situation and make life better for future generations. However my third concern is what will be done with our data?

We are told  it will be made available to others –  such as those planning NHS services and ‘approved researchers’.

  • Is this a full list? What are the criteria for approving researchers? (Are they, for example, British researchers working within the NHS? Are they health researchers? Will they be using the research for profit – and will the NHS benefit, or  be disadvantaged by this?)
  • What if our data were sold to – or indeed, fell into the hands of –  researchers from an aggressive multinational pharmaceutical company, who patented the findings?
  • What if elements of the media saw this as the next thing after telephone hacking and hacked into such a database to establish  – and publish – things that we  would prefer to be kept private?
  • Or insurance companies found ways to plug into detailed medical histories?
  • Indeed, what if organisations started targeting us with health-specific ads?

There are a lot of questions about the use and sale of our personal medical data that are not currently being answered. I am a little worried that the government might not even have thought of some of them.

NHS data sharing? I share mine with my excellent GP practice, with various hospitals and with various expert medical personnel.  But until I get assurance as to its future use on points such as those above,  I will not be sharing it with the state!

What’s been happening in Suffolk, Jan 2014

May I start by wishing you a happy and  prosperous New Year.

 Flooding update Although Woodbridge town survived the flooding on 6 December with relatively few problems, there were breaches to the river wall to the north and south of Martlesham Creek. Cattle had to be rescued from the flood along the north bank, where a 30m wide breach left 30 acres of grazing land underwater. Work has been undertaken on the north wall and footpath which leads from Kyson Point to the footpath from Sandy lane.

Ipswich Sexual Health Clinic This fiasco continues. From Monday 28 October the sexual health service has been operating a reduced level of service from the clinic based at Ipswich Hospital , with the service having to vacate the site completely from April 2014.

We were told that the reason for this move was that there were plans to  create a sexual health hub in a more accessible location.  However it turned out that the ‘accessible location’  might as well have been picked out of a hat!  Gipping Court, Constantine Road proved not to be possible due to flooding issues. So, instead,  the service has been relocated to Lindbergh Road in Ipswich – in other words, as far out of town as Ipswich hospital but with far poorer transport links for people  from Woodbridge and beyond.  In fact, Woodbridge people relying on public transport  face a two-bus ride of about an hour plus a 20min walk to get to the new clinic. This is as opposed to the journey  to Ipswich hospital which was a half an hour single bus plus a 7 minute walk.

So much for greater accessibility and the vaunted ‘good transport links’ !  I am continuing to point this out

Highways Issues of efficiency still continue after  KierMG took over the contract to maintain  the public highway network in Suffolk at the end of last year. (The public highway consists of any verge, footway, carriageway, bridleway or footpath whether or not maintained at public expense and over which the public has a right of way) . SCC is therefore starting a political group of councillors  to work informally together in the new year with Suffolk Highways colleagues from SCC and Kier to help best meet needs for information and communication within the new contract. I am the nominated Lib Dem member of this group.

County Councillor’s Locality Budget  I am glad  to have been able to support Woodbridge town and  Choose Woodbridge in  providing funding for the skating rink, which will hopefully  bring people into the town in mid -February.

County Councillor’s Surgery Surgery dates for the next few months will be on Saturday 18 January, Saturday 15 February, and Saturday 19 April. There will be no surgery in March as I will be in China

 

Happy New Year – best wishes for 2014!

Woodbridge, from across the river Deben.  The view will have been much the same for hunderds of years
Woodbridge, from across the river Deben. The view will have been much the same for hundreds of years

After counting in the New Year on Market Hill and walking happily home in the dark under blazing white  constellations, it’s  perhaps the way of the world that there’s now a blustery beginning to another year.   Lets hope 2014 will be a good one! You can count on me to do everything I can to help make it so.

If you have problems, do tell me about them – by phone, email, face-to-face. The first surgery of the year is on

Saturday 18 January 10-12 at Woodbridge Library, as ever.
All welcome, and no booking necessary (though you may have to wait a bit if it’s very busy).

Advance warning that this year there will be no surgery in March as I will be travelling to China to visit two of my children who are working and studying in Yanzhou and Qufu respectively. I am excited already!