Understanding Information Sharing

You may have recently seen information in the press or online concerning the sharing of patient information. There are currently two different types of data sharing; the Summary Care Record and Care.data. It is important that you understand the differences between these two systems so that you can make an informed choice about whether you are happy for your data to be shared or whether you wish to opt out of one or both of these schemes.

Summary Care Records (SCR)

A Summary Care Record is an electronic record that is stored at a central location, which contains information about:

  • The medicines you take
  • Allergies you suffer from
  • Any bad reactions to medicines you have had.

The record does not include detailed information about your medical history, but only contains important health information plus your date of birth, postcode, NHS number and your gender, in order to help identify you correctly.

The only people that have access to the Summary Care Record are members of healthcare staff directly involved in your care who have the appropriate smart card access. Having this information stored in one place makes it easier and quicker for healthcare staff to treat you in an emergency, or when your GP practice is closed. The information being shared in your Summary Care Record could be critical in an emergency situation.

Opting Out: If you have any objections to your data being shared in this way, please complete the Summary Care Record Opt-Out form below and bring it along to the surgery.

Care.Data

Starting in autumn 2014, information about patients and the care they receive will also be shared in a central database managed by the Health and Social Care Information Centre (HSCIC). Once a month information will be extracted from computer records in GP surgeries and will be linked to information from all the different places where patients receive care, such as hospitals and community services.

What are the potential benefits of Care.data?

The aim of Care.data is to provide a complete picture of the care being delivered to patients and to identify areas where more work or investment might be needed. The NHS says that Care.data will help them find more effective ways of preventing or managing illness; monitor the risk of disease spread and streamline inefficiencies. Moreover, the datasets could be incredibly useful for third-party researchers investigating the causes of cancer and heart disease or to spot the side-effects from certain drugs.

What data will be sent to the HSCIC?

The data that will be extracted from GP systems includes: referrals, NHS prescriptions, your family history, vaccinations, blood test results, body mass index, smoking/alcohol habits etc - dating back to April 2013. The information will be extracted as a series of codes, not as words or sentences. Identifiers, including date of birth, postcode, NHS number and gender are required in order to link the GP data with the data from hospitals.

Will anything not be sent to the HSCIC from my records?

Currently free text notes and "sensitive data" (which includes details of infertility and assisted conception, sexually transmitted infections, abortions, gender identity matters and abuse) will not be included in the data transfer.

Who can access the data?

Information from your Care.data record will be made available to organisations within the NHS such as Commissioning bodies, but also outside of the NHS, potentially (subject to approval) to pharmaceutical companies, health charities, universities, hospital trusts, think-tanks and other private companies.

If you are unsure, you can read more about Care.Data using the links below or you can ask our practice staff.

Summary Care Records and Care.Data Overview

Summary Care Records Care.data

Information extracted:

  • Your NHS number and date of birth
  • Your postcode
  • Your gender
  • Your prescriptions
  • Your allergies
  • Information on bad reactions you've had to any medication

Information extracted:

  • Your NHS number and date of birth
  • Your postcode
  • Your gender and ethnicity
  • The medical diagnoses on your record, and any referrals
  • Your prescriptions
  • Your family history
  • Your vaccinations and screening tests (smears, etc)
  • Your blood test results
  • Your body mass index (BMI)
  • Your smoking and alcohol habits

Who can access the information?

  • Healthcare staff who are directly involved in your care.

Who can access the Information?

  • Medical charities. For example, Cancer Research UK, Arthritis Research UK, Diabetes UK
  • Universities and other academic research organisations
  • Medical Royal Colleges. For example, the Royal College of General Practitioners (RCGP), or the Royal College of Surgeons (RCS). These institutions produce standards and guide training for each speciality of doctors
  • Commercial companies. This includes medicine companies (pharmaceutical companies). The information would help them produce, develop, and target new medicines.
  • "Think tanks". These are groups of experts on particular subjects who give advice and ideas about specific problems
  • "Information intermediaries". These are organisations which liaise between the suppliers of information and those who want it.

Further information

Further information

Summary Care Records
Opt-Out Form

 

PLEASE NOTE: Opting-out of one database does not mean that you have automatically opted-out of the other.

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