How much progress has been made in developing the new Health Register for all Islanders, has there been any data protection issues

2.13   Deputy J.A. Martin of the Minister for Health and Social Services regarding the development of a new Health Register:

Would the Minister inform Members how much progress has been made in developing the new Health Register for all Islanders, whether there has been any data protection issues and, if so, what these are? Thank you.

Senator S. Syvret (The Minister for Health and Social Services):

The Health database is about getting more timely treatment to those who need it. The database is not up-to-date at the moment and therefore Island screening programmes have fallen behind that

which will take place in England. G.P.s (general practitioners), the hospital and the Public Health Department need to offer screening and other preventative services as an essential part of the Island's comprehensive health service. The States of Jersey are acting on a fundamental recommendation contained in the Medical Officer of Health's Annual Report. I fully support the creation of a health database. It will bring about a tremendous improvement in health and social care in Jersey. The approach has the full support and involvement of leading Island G.P.s and key hospital consultants who are actively working together to create the database to improve screening, immunisation and the quality and efficiency of other aspects of patients' health care.

1. Deputy J.A. Martin:

I do not think the Minister touched on my question. I did ask how far advanced it was and how much progress has been made, and whether he had any knowledge of data protection issues, and neither of these questions were answered. So could the Minister, please, answer directly both those questions?  Thank you.

Senator S. Syvret:

The screening database hopefully will be completed some time this year, and that will lead to an improvement in services in terms of screening. It should not be confused with the much broader, longer-term health I.T. (information technology) investment which aims ultimately to move towards a completely integrated patient record system that makes the sharing of information among clinicians who need to see it much more speedy and effective. There has been some discussion between the Medical Officer of Health and the Data Protection Registrar, and any concerns I think that were expressed have been done so satisfactorily, certainly as far as the Health and Social Services proposals are concerned. I could not comment whether the view is the same of the plans for the overall Island population database which is not within the responsibility of my department.

2. Deputy J.A. Martin:

Well, my understanding is that that is the concern. There are 2 departments and 2 registers, or even now maybe, the Minister has said, 3 registers. This is cost, this is duplication, and the Data Protection Registrar has issues about how one registry is being formed and whether the other population register will be just piggy-backed on to the back of it. Also, could the Minister tell the House how much his department has already put forward to this Health Registration Scheme?

Senator S. Syvret:

As far as the cost that we have invested so far in the health screening database, it is about £60,000 so far, but that, of course, is very, very small compared to the long-term investment in the overall health database. I cannot answer for the Central States' issues as far as the database is concerned. All I can tell the Assembly is that the expert medical opinion is united in the importance, and great improvement will be brought about in health care delivery by a comprehensive electronic patient

database. That is what we will be working towards in the next 2 or 3 years at Health and Social Services. The Data Protection Law is pretty clear and that database, while some of its methodology and approaches might be adopted by the Central States of Jersey population database, the information contained in the health database will be absolutely confidential. It is gathered for health purposes and that is all it can be used for.

3. Deputy P.V.F. Le Claire:

The Minister says that the reason and the rationale for the Health Register is so that we can reduce the waiting times in relation to various sectors within the health realm, whether it be screening or improving services. The National Institute for Clinical Excellence sets targets whereby patients should be receiving, or expecting to be receiving, procedures and care. Would the Minister be able

to circulate to Members now a comparison of the waiting times for various services in relation to those expectations indicated by the National Institute for Clinical Excellence, so that once the Register is in place we will be able to see whether or not there has been any marked improvement after a period of time?

Senator S. Syvret:

I am not entirely sure what the Deputy is talking about. The issues we are talking about here are the needs to improve screening, and that will make the database much more comprehensive and

patients will get called for screening and get reminded to come and get screened for a variety of illnesses. It will also enable us to keep a much more effective and comprehensive database as far as child immunisations are concerned. As far as the clinical procedures - if that is what the Deputy is getting into - that take place in the hospital operations, and so on, the waiting times in Jersey are

currently extremely good compared to the U.K. average. We have achieved great things in the last

couple of years in bringing waiting times down. I do not have the precise list of current waiting times for current procedures with me at the moment, but I can certainly make that available should the Deputy wish it.

4. Deputy S.C. Ferguson:

Will the Minister tell us whether there is an option to opt out of having your data spread all around an electronic system?

Senator S. Syvret:

I am not an expert in the Data Protection Law, but my understanding is that you can opt out if you wish, but there would be consequences. I mean, there are certain data sets that people cannot opt out of, for example, income tax and things of that nature. I do not think that kind of statutory requirement applies to the health data. The point is as society moves more and more towards a completely electronic database it is going to seriously jeopardise the speed and effectiveness of your treatment as an individual patient if you have insisted on not being a part of the electronic database, instead just using old paper records.