Mes­sage from NHS Eng­land — care.data Programme

In some cir­cum­stances, health­care staff share infor­ma­tion about your treat­ment and care to help us to improve the ser­vices we offer and the care we pro­vide to every­one. The type of infor­ma­tion shared, and how it is shared, is con­trolled by law and strict con­fi­den­tial­ity rules.

In order to plan and improve care for all patients it is impor­tant that we link infor­ma­tion from the dif­fer­ent places where you receive care to help us pro­vide a full pic­ture. This will let us com­pare the care received in one area to the care received in another, so we can see what worked best.

Your post­code or NHS num­ber, rather than your name, will be used to link your records in a secure sys­tem, so your iden­tity is pro­tected. Infor­ma­tion which does not reveal your iden­tity can then be used by oth­ers, such as researchers and those plan­ning ser­vices, to make sure we pro­vide the best care pos­si­ble for everyone.

We need to make sure that you know this is hap­pen­ing and the choices you have.

Ben­e­fits of shar­ing information

Shar­ing infor­ma­tion can help improve under­stand­ing, locally and nation­ally, of the most impor­tant health needs and the qual­ity of the treat­ment and care pro­vided by local health ser­vices. It may also help researchers by sup­port­ing stud­ies that iden­tify pat­terns in dis­eases, responses to dif­fer­ent treat­ments and poten­tial solutions.

Infor­ma­tion will also 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; and
  • 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.

What will we do with the information?

We will only ask for the min­i­mum amount of infor­ma­tion we need to help us improve patient care and the ser­vices we provide.

We have devel­oped a thor­ough process that must be fol­lowed before any infor­ma­tion can be shared. We are very care­ful with the infor­ma­tion and fol­low strict rules about how it is stored and used.

We will make sure that the way we use infor­ma­tion is in line with the law and meets the NHS con­fi­den­tial­ity code of prac­tice, the NHS Con­sti­tu­tion and other national guid­ance and best practice.

Reports that we pub­lish will never iden­tify a par­tic­u­lar person.

Do I have a choice?

Yes. If you do not want infor­ma­tion that iden­ti­fies you from being shared out­side your GP prac­tice, tell your prac­tice to make a note of this in your med­ical record. This will pre­vent your con­fi­den­tial infor­ma­tion being used other than where nec­es­sary by law (for exam­ple, if there is a pub­lic health emergency).

You will also be able to restrict the use of infor­ma­tion held by other places you receive care from.

This will not affect the care you receive.

Do I need to do anything?

If you are happy for your infor­ma­tion to be shared to help improve ser­vices, you do not need to do any­thing. There is no form to fill in and noth­ing to sign, and you can change your mind at any time.

If you would like to opt out then please com­plete a data shar­ing con­sent form. These forms are avail­able at recep­tion or you can down­load a Data Shar­ing Con­sent Form (PDF, 220kb).

Will any­one con­tact me?

We some­times release infor­ma­tion to approved researchers where this is allowed under strict con­di­tions. For most research, patients do not need to be con­tacted, but in some cases they do. If a researcher needs to con­tact you, they will only do this with the approval of your own doc­tor, who will con­tact you for your permission.

Where can I get more information?

For more infor­ma­tion about how data is col­lected and shared, includ­ing con­fi­den­tial­ity, down­load the FAQ for patients (PDF, 153kb).

A patient infor­ma­tion leaflet is also avail­able for you to down­load How infor­ma­tion about you helps us to pro­vide bet­ter care (PDF, 344kb)

NHS Eng­land and NHS.uk web­sites both have more infor­ma­tion regard­ing data sharing.