We need to talk …

We need to talk about access to medical information. I have been putting off writing about this on the blog for some months, whilst recognising that I needed to do it. Why have I been putting it off? Largely because it is complicated and I have struggled with how to explain it clearly.

General practice has led the way with electronic records and computing. Most GPs have been using electronic records in some form or another for the last 20 years. We are streets ahead of the hospital and community services in this respect. What makes the data we have collected so valuable is that the UK signed up early to a coding system devised by a GP called Dr James Read. The Read coding system  contains hundreds of thousands of terms, synonyms, and abbreviations covering all aspects of patient care including signs and symptoms, treatments and therapies, investigations, occupations, diagnoses, and drugs and appliances.

Twenty years of Read coded data potentially holds information that will assist research; improve pathways of care for patients; reduce prescribing errors; reduce duplication between services and assist information gathering for disease outbreaks and epidemics.

For all these reasons lots of people want permission to access to this information. I have already written about the summary care record on a previous blog and this is possibly the best publicised scheme and the easiest to see direct patient benefit in. Here limited data including drugs and allergies will be shared with other health care providers such as district nurses, accident and emergency and hospital outpatients. You can opt out of sharing your data by telling us so that we can code your wishes on the clinical system and prevent data-sharing.

In the course of the next few months it is proposed that data will be shared in another scheme with the local community services provided by Bromley Healthcare. Patients will have their consent to this sought by the referrer on an individual basis. The district nurse, health visitor, podiatrist, diabetic nurse or other clinician will then be able to view a read only medical record with information limited to patient demographics; (possibly) a summary medical history; medication; allergies and recent investigations. No information will be extracted from the record and your GP will be able to view a parallel record documenting the care that you have received from the community services. This has not yet been finalised but once the details are ironed out the benefit to patients care is easily appreciated.

So far so good I think, but now things get a little more complicated.

This information is taken from the NHS choices website it is not me talking:

“A modern information system has been developed, which will make increased use of information from medical records with the intention of improving health services. The system is being delivered by the Health and Social Care Information Centre (HSCIC) and NHS England on behalf of the NHS.

It is important that the NHS can use this information to get a complete picture of what is happening across health and social care and to plan services according to what works best. The new system will provide joined-up information about the care received from all of the different parts of the health service, including hospitals and GP practices.

Your date of birth, full postcode, NHS Number and gender rather than your name will be used to link your records in a secure system, managed by the HSCIC. Once this information has been linked a new record will be created. This new record will not contain information that identifies you. The type of information shared, and how it is shared, is controlled by law and strict confidentiality rules.

The new system will also provide information that will enable the public to hold the NHS to account and ensure that any unacceptable standards of care are identified as quickly as possible. Information will help to:

•find more effective ways of preventing, treating and managing illnesses

•guide local decisions about changes that are needed to respond to the needs of local patients
•support public health by anticipating risks of particular diseases and conditions, and help us to take action to prevent problems
•improve the public’s understanding of the outcomes of care, giving them confidence in health and care services
•guide decisions about how to manage NHS resources so that they can best support the treatment and management of illness for the benefit of patients”

The changes make it a legal obligation for GPs to share your information. The proposed benefits of sharing identifiable data are to help to plan and monitor effective patient services, especially where patients receive care from several different organisations. This is not your direct care but the management of the health of everyone.

There is a very clear and balanced explanation of what is going on provided for patients by the National User Group affiliated our computer systems supplier:

http://emisnug.org.uk/article/patient-information-caredata

Please use the link below to read the official information and decide whether you wish to opt in or out of this data.

If you do not wish your information to be used you have only a few weeks to let the surgery know so that we can code it on your medical records.

NHS England decided not to have a national publicity campaign publicising this and have left it up to GPs to inform their patients. For more information, please see here:

http://www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Documents/nhs-england-care-data-paient-leaflet.PDF

The legal situation is this NHS England have said that under the Health and Social Care Act, practices have a statutory duty to share information with the Health and Social Care Information Centre. However, GPs also have a duty under the Data Protection Act (DPA) not to share confidential patient information. The Information Commissioner's Office (ICO) have said that if practices do not take ‘reasonable steps’ to make patients aware of the changed, they leave themselves open to legal action from patients under the DPA.

I would value comments and feedback, giving me your views on all the aspects of data sharing by letter, email, comments on the blog or face to face. If I have not explained this clearly please ask Dr Mustapha or myself to talk it through when you see us.