requesting amendments to health and social care records… · requesting amendments to health and...

Requesting amendments to health and social care records

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Guidance forpatients, service users andprofessionals

2 | Requesting amendments to health and social care records

Contents

About this guidance 3

Section 1 - for patients, service users and the public

Summary 5

What are records for? 6

How problems happen 7

About removing information from records 8

Using information from records for purposes other than for providing care and treatment 10

What to do if you disagree with what is in your record 11

Section 2 - for professionals

Guidance for health and social care professionals 15

Appendices

1 Parents and young people 17

2 What the law and professional guidelines say about records 18

3 Members of the Working Group 20

4 The Working Group’s responsibilities 21

5 References 22

Requesting amendments to health and social care records | 3

The National Information Governance Boardfor Health and Social Care (NIGB) was setup as part of the Health and Social Care Act2008 to provide advice and guidance on,and support improvements in, howinformation is used in health and social carein England.

We heard from patients who were finding itdifficult to get changes made to the parts oftheir healthcare record they disagreed with.We felt these represented a wider issue, sowe have produced this guidance which wehope will help you. We have explained whatshould happen, but how this will happen isdown to individuals and organisations.

This guidance has been produced by agroup of NIGB members and medical andlegal experts. The working group talked tomembers of the public, GPs, CaldicottGuardians (senior staff in the NHS and socialservices who protect patients’ information)and other staff responsible for health andsocial care records, all of whom hadexperience of this issue.

In this document we will discuss:

• the purpose of healthcare and social carerecords;

• how we believe problems develop interms of what information recordscontain; and

• what the law says.

We give guidance about what shouldhappen when people ask to changeinformation in their record. Section 1 is forpeople asking to change their records andsection 2 is for professionals.

The way this guidance will apply to youngpeople will change as they grow up andbecome more able to make decisions forthemselves. Also, as children’s records maycontain information about their parents, we have used appendix 1 to explain howour guidance will normally apply tochildren’s records.

You can find more information about theNIGB and our work at www.nigb.nhs.uk.

About this guidance

Section 1 - for patients, service users and the public

We consider a ‘record’ to be informationabout providing health or social care, whichidentifies the patient or service user,whether they are an adult or a child.

The National Information Governance Boardfor Health and Social Care (NIGB) stronglybelieves that health and social careorganisations that keep records hold thatinformation for a number of people whohave a genuine interest in its accuracy and inusing it. As the patient or person using theservice - in other words, the ‘subject’ of therecord - you have a personal interest in therecord being an accurate reflection of yourconsultation (including your own views and,in a health record, the process of diagnosis).

If you disagree with what is in your healthor social care record, you should do thefollowing:

1 Explain your worries to the person whoput the information in your record. Ifthat person is no longer available,contact:

• the clinician (a doctor, nurse, healthvisitor or other person carrying out asimilar role) or social care worker whocurrently has your record;

• the chief executive of the hospitalwhich holds your record;

• the GP practice which holds yourrecord; or

• the director of adult or children’ssocial services at your local council.

Good communication is very importantwhen dealing with this problem.Everyone involved should try to deal withthe problem quickly. For moreinformation, see ‘What to do if youdisagree with what is in your record’.

2 You should always expect that if youdisagree with what is in your record, a

note about this will be added. For moreinformation, see ‘What to do if youdisagree with what is in your record’.

3 There may be rare circumstances when itwill be agreed that it would beappropriate for an entry in your paperrecord to be completely removed sothere is no trace that it was ever there,but this will not usually be the case (onpage 8 we explain in detail why this is).When an entry is removed, there mustbe a clear reason for this, andinformation about what has beenremoved should be put in the record. Formore information, see ‘About removinginformation from records’.

4 Remember that records contain opinions,and an opinion is not wrong just becauseyou disagree with it. For moreinformation, see ‘How problems happen’.

5 If you feel that your request is not beingdealt with appropriately, you should usethe NHS or social care complaintsprocedures. For more information, see ‘Ifyou do not feel that your concerns havebeen properly dealt with’.

6 If your complaint using either the NHS orsocial care complaints procedure isunsuccessful, you could also complain tothe Parliamentary and Health ServiceOmbudsman (for complaints abouthealth records) or the Local GovernmentOmbudsman (for complaints aboutsocial care records). For moreinformation, see ‘If you do not feel thatyour concerns have been properly dealt with’.

7 You can also complain to the InformationCommissioner. For more information, see‘If you do not feel that your concernshave been properly dealt with’.

Summary



There are many definitions of what a healthor social care record is. However, in thisdocument we consider a ‘record’ to beinformation about providing health or socialcare, which identifies the patient or serviceuser personally. Records can be kept indifferent ways, including on a computer, onpaper or a mixture of both. In most cases,records are held by a professional or teamproviding care or by the organisation theywork for. In some cases (for example,maternity and child-immunisation records),the person receiving the care, or theirrepresentative, may hold the records.

Originally, individual clinicians and socialworkers kept records as personal records ofwhat had been discussed with you, whataction they had taken and their professionalopinions, examination findings, test resultsand other reports.

Providing health and social care nowinvolves teams of people rather thanindividuals. So, depending on the servicesthat you have used in the NHS and in socialcare, you may have several records inseveral different places, some or all of whichmay be linked. The teams use these recordsto co-ordinate your care. The MedicalProtection Society says doctors should beable to understand the essential parts of apatient’s medical record without having toresort to memory. Medical records shouldbe detailed enough for another doctor (orother health professional) to deal with thepatient’s case. The same should apply tosocial care records.

In recent times there has been a change inhow health and social care is provided, andpeople expect to be more involved indecisions about their care. You makeinformed choices, rather than beingdirected by a health or social careprofessional. Records are increasinglybecoming information which is shared andthat you can look at and be involved in. For

some time, professional guidelines and thelaw have allowed you to see what is in your records.

The boundaries between health and socialcare are blurred, so it is not unusual to findsome information about health in socialcare records, and vice versa.

Accurate records are important for makingsure you receive continuous care and aresafe. They may also be needed for legalpurposes (for example, if you wanted tomake a claim after a traffic accident).Records are also very important if you makea complaint about the care you havereceived - not just for you but for the personor service you are complaining about.

In healthcare there are different ways to userecords and gain access to them. Someclinicians will tell you what they have addedto the record and a small number let yousee your electronic record from your homecomputer. The Data Protection Act 1998gives you the legal right to see what is inyour record, although there are some caseswhere this is not possible. (For more detailson the Data Protection Act, seewww.opsi.gov.uk/acts/acts1998/ukpga_19980029_en_1)

In social care, where possible, it is usual forthe person putting the information in yourrecord to agree this information with you. If they cannot agree this with you, you can ask to have your comments included inthe record. Most local councils are veryopen about letting you add comments toyour record.

What are records for?


There can be several reasons why peopledisagree over what is in their record.

a The information is wrong No system is completely free of mistakes,and keeping health and social carerecords is no exception. Occasionally,mistakes will be made - the records ofpeople with the same name and similardates of birth could be mixed up withoutit being noticed, test results could getput in the wrong record, or aprofessional could add the wronginformation.

b The facts are correct but you wantcertain parts of your record removedPeople naturally worry about otherpeople sharing or seeing very sensitiveinformation without their fullpermission. You may want to avoid thisby having parts of your healthcare orsocial care history permanently deletedand, sometimes, to have no sign in yourrecord of them having been deleted.

c The difference between ‘fact’ and‘opinion’Health and social care records containfacts, but also opinions, judgements anddecisions made based on theinformation the care professional knowsat the time.

In healthcare, making a diagnosis oftenhappens in steps rather than a singleevent, and health professionals need tobe able to record their thoughts at aparticular time, even if the ‘facts’ are nottotally clear. It can be easy for opinionsand facts to be confused. Professionalsshould make it clear in the record whichinformation is there not as confirmedfacts, but to help the diagnosis andtreatment. This is especially important ifyou disagree with anything in yourrecord and you want to have your ownviews put in the record.

d Information given by, or about,another personRecords may include informationreported by or about another personwhich the clinician or social careprofessional thinks is important enoughto be included. (Professionals often callthis ‘third party’ information.) Details ofthe health and social care professionalsinvolved in your care is not third partyinformation.

If there is information about someoneelse or supplied by someone else in arecord, it should be clearly marked.Clinicians and social care staff shouldtake reasonable steps to make sureinformation is accurate before theyrecord it, and, if appropriate, try to findout from you whether the information iscorrect. If professionals find thatinformation is not accurate or that it hasbeen reported maliciously (that is, withthe intention to cause harm), theyshould say this in the record. They mayalso feel it is appropriate to remove theinformation from the record if it has notalready been used to make a decision.

Under the Data Protection Act 1998,when you ask to see what is in yourrecord you should be able to see asmuch information as possible. However,in some circumstances, you may not beable to see any information which couldidentify another person, unless thatperson agrees that you can see it or theperson who holds the record feels that,given all the circumstances, it isreasonable to give the information toyou without the other person’spermission.

How problems happen


Some people think that mistakes in recordsshould be completely removed so that no-one can tell that they were ever there. Withhealth and social care records, this is not thecase, and it is not safe, for you or theprofessionals providing your care, forinformation to be completely removed.

The organisations which advise, supportand give guidance to doctors nationally, theInformation Commissioner’s Office and theNational Information Governance Board forHealth and Social Care all agree that theinformation in health and social care recordsshould never be changed or removedwithout an explanation being recorded.

Records are a history of the care ortreatment you have had. They often containlarge amounts of information, includingyour opinions, details of the treatment andcare you have received, test results and theopinions, judgement and advice used byhealth or social care professionals to makedecisions about your care. The main reasonfor keeping a record is to support you.

Providing care and treatment is oftencomplicated and based on trust betweenyou and the professionals providing it.Professionals will usually make decisionsabout care or treatment based on whathappened or what was done previously. Forthis reason, it is important to you and theprofessionals that the whole record(including any amendments, who madethem, and why) is available.

Completely removing one or more pieces ofinformation from a record so that no oneknows it was ever there can be like taking achapter out of a book - the followingchapters often do not make sense.

If information is removed and there is notrace that this has happened, it can make itdifficult for professionals to understand therecord, and it may not be reliable. This cancreate two problems.

The first is that not having the relevant factsavailable about your care or treatment may,in some circumstances (such as in anemergency), put you at risk. The second isthat if something goes wrong, you mightnot be able to show that you were givenpoor advice, care or treatment. Also, theprofessional might not be able to show thatthey provided good advice (for example, onthe side effects of drugs).

If you ask to have information removedfrom your record, the professional will haveto take account of the importance of havinga complete record.

Information is normally removed from apaper record by drawing a line through itand adding a comment to say why it isbeing removed. This shows that theinformation should be ignored, and explainswhy, but means the record is still complete.

We accept that there may be rarecircumstances when, after a full riskassessment, which involves the person therecord is about, it will be agreed thatinformation will be completely removedfrom a paper record leaving no trace that itwas ever there. We cannot say when andwhy this might happen as it will depend onthe risks and benefits in individual cases.

An advantage of new modern electronicrecords systems is that they automaticallykeep information about what has beenchanged in a record, when it was changedand who has changed it. This information iscalled an ‘audit trail’. People who need tosee your record for care purposes will notbe able to gain access to the audit trail. This means that information can beremoved from your record, but the audittrail will always keep the record complete.Information in the audit trail must stay complete.

When someone asks for information to beremoved from their record (whether

About removing information from records


electronic or paper), they must be madeaware of any potential consequences fortheir future care. There must also be a clearexplanation of the reasons for removing theinformation and we would expect thefollowing to be recorded:

• The fact that information has beenremoved;

• The justification for removing it;

• The date the information was removed;and

• The person who removed the informationor authorised this to happen.

This would allow the patient to be askedabout why the information was removed, if necessary.

When the professional holding your recordfeels that information should be removedfrom it, they should tell you, ask for yourpermission and record this. They do not need to do this if they are removingsomething which is not relevant to yourcare or medical treatment.

In June 2009, the InformationCommissioner agreed that if a patient asksfor all of their summary care record(summary care records are part of the NHSCare Records Service) to be removed, andthe record has not been used for clinicalcare, the record should be completelydeleted, without keeping an audit trail of itscontents. This fits with our guidance, asinformation is not entered directly into thesummary care record - it comes from otherelectronic record systems (for example, GPs’systems). The Information Commissioner isnot suggesting that the information inthose other electronic records systemsshould be deleted, and so the originalrecords and audit trails remain complete.

About removing information from records

Note

1 The Care Record Development Board Working Group’s report on the ‘Secondary Uses of PatientInformation’, August 2007. Available at www.connectingforhealth.nhs.uk/crdb/workstreams


In 2007 the Care Record DevelopmentBoard published a report on what are calledthe ‘secondary uses’ of patient information(see note 1 below). ‘Secondary use’ meansusing your information for purposes otherthan providing care and treatment. Thiscould include, for example, managing theNHS or carrying out research.

We have considered what should be done ifinformation which is sent to a nationalelectronic system for secondary uses is laterfound to be incorrect and is corrected in thesystem used for directly providing care.

If it is possible to identify you from yourinformation, we believe there should be aprocess in place to correct this. If that is notpossible, the parts of the information whichidentify you should be removed, or therecord should be deleted in the secondaryuses system. In other words, we accept that

there may be a need to delete entries fromelectronic systems which are used just forsecondary purposes. As mentioned earlier,we believe that information can, andshould, never be completely removed fromboth an electronic record and the associatedaudit trail of electronic systems which areused to provide care and treatment.

If it is not possible to identify you from yourinformation, we believe that theorganisation holding the information shoulddecide whether it would be practical tochange it.

We recognise that this is complicated andfeel that the NHS Information Centre forHealth and Social Care should consider thisproblem and produce guidance.

Using information from records for purposes otherthan for providing care and treatment


What to do if you disagree with what is in your record

Health and social care organisations thatkeep records hold that information for anumber of people who have a genuineinterest in its accuracy and in using itappropriately. As the patient or personusing the service - in other words, the‘subject’ of your record - you have apersonal interest in it being an accuratereflection of your consultations (includingyour own views and, in a health record, theprocess of diagnosis).

Our guidance on disputes overthe content of records

• If you disagree with something in yourrecord, the first thing you should do is toraise your concerns with the person whoadded that information. If that person isno longer available, contact:

o the clinician or social care worker whocurrently has your record;

o the chief executive of the hospitalwhich holds your record;

o the GP practice which holds yourrecord; or

o the director of adult or children’ssocial services at your local council.

Good communication is very importantwhen dealing with this problem. Be clearabout what your concerns are and howyou want them to be put right. All thepeople involved should try to settle thematter quickly.

• If you are worried about raising thematter yourself and you are concernedabout a health record, you should askyour local Patient Advice and LiaisonService (PALS) for help (seewww.pals.nhs.uk). Every NHS trust has aPALS to provide confidential advice andsupport to patients, families and theircarers. As one of their roles is to provideconfidential help in dealing with

problems and concerns quickly, you mayfind that they can help you to find asatisfactory solution. You can use NHSDirect (call 0845 4647 or go online towww.nhsdirect.nhs.uk) to find thecontact details of your nearest PALS.

• NHS Direct, your local Citizens AdviceBureau (or Age Concern, if appropriate)can provide advice on complaints aboutthe NHS or social care.

What you should expect to happen

• In all situations where you disagree withyour record’s contents, a note about thiswill be added to the record.

• If information about you is incorrect, thiswill be corrected and a note addedexplaining what was corrected, why, bywhom and when. ‘Corrected’ does notnecessarily mean deleted without trace.The Data Protection Act 1998 gives you aright to expect that any record about youwill be accurate.

• If you are disputing an opinion in yourrecord, you must remember that anopinion is not incorrect just because you,or another professional you ask, disagreewith it. You should also note that opinionscan change or vary and that keepingprevious opinions (even if they areeventually shown to be wrong) can beimportant in understanding the careprocess. In all situations, a note of yourconcerns will be added as explained above.

We looked at the web pages of severalsocial services departments and they allmade it clear they would do this. Inhealthcare, both the Medical DefenceUnion and the Medical Protection Societyhave agreed that this is an appropriate wayof dealing with such a problem, and webelieve this model reflects best practice.


At the time we produced this document(May 2009), the Department of Healthguidance (see note 2 below) advisesclinicians to agree to add a comment to arecord if the patient:

• asks for this; and

• has used the NHS complaints procedure(see note 3 below); and

• has complained to the InformationCommissioner.

We disagreed with this approach. Webelieve that patients should not have tomake a formal complaint to get a commentadded to their record. We have advised theDepartment of Health that it would beappropriate to revise its guidance on thisand it has agreed to do this.

If you do not feel that yourconcerns have been properlydealt with

• You should use the formal complaintsprocess of the organisation you havebeen dealing with.

• You can find information about making acomplaint about an NHS or a social careorganisation by calling NHS Direct on0845 4647 or going to their website atwww.nhsdirect.nhs.uk. Local NHSorganisations will give you informationabout their complaints procedure. Yourlocal council’s social services departmentcan give you information about theircomplaints procedure, or you could visit

www.direct.gov.uk. Your local CitizensAdvice Bureau (or Age Concern, ifappropriate) may also be able to provideadvice on complaints about the NHS andsocial care.

• If your complaint is about an NHSorganisation, your local Patient Adviceand Liaison Service (PALS) can tell youhow to make a complaint to the NHSorganisation which holds your record.The PALS can refer you to theIndependent Complaints AdvocacyService (ICAS) if you need help withmaking a complaint. Again, NHS Directcan give you the contact details of yourlocal PALS.

• If you are not happy with the result ofyour complaint, you can refer the matterto the Parliamentary and Health ServiceOmbudsman (health) or the LocalGovernment Ombudsman (social care).You can also complain to the InformationCommissioner, but they will only getinvolved after you have contacted theorganisation concerned and given it anopportunity to put things right (see note4 below). The Information Commissionercan assess whether your information hasbeen used in an appropriate way underthe Data Protection Act 1998. Althoughthe Information Commissioner can issuean enforcement notice to make theorganisation keep to the Data ProtectionAct, they usually only do this in caseswhere the organisation has broken theconditions of the Data Protection Act in aserious way, or repeatedly.


Notes

2 Department of Health guidance on access to health records - www.dh.gov.uk/en/Managingyourorganisation/Informationpolicy/Patientconfidentialityandcaldicottguardians/DH_4084411

3 NHS complaints procedure - www.nhs.uk/choiceintheNHS/Rightsandpledges/complaints/Pages/NHScomplaints.aspx

4 Information Commissioner’s Office, ‘Data Protection Act 1998 - When and How to Complain’, page 4.See www.ico.gov.uk/upload/documents/library/data_protection/practical_application/dp_how_to_complain_final.pdf



‘Significant damage or distress’ - section 10 of the Data ProtectionAct 1998

The Data Protection Act deals with‘processing information’ and this includeskeeping and using information. If you feel,and can show, that keeping someinformation about you in your record iscausing you a significant amount ofunnecessary damage or distress (the Actcalls it ‘substantial and unwarranted’),section 10 of the Act (see note 5 below)allows you to write to the organisationconcerned asking that they stop keeping orusing the information. You will need toquote section 10 and give the specificreasons for why keeping or using theinformation is causing, or is likely to cause,you significant, unnecessary damage ordistress. If they refuse and you do notaccept their reasons, you can take thematter to court to stop the organisationfrom keeping or using your information.However, you do need to be aware thatsection 10 is a complicated part of the Data

Protection Act and that there are severalexceptions under which it does not have tobe enforced. For example, it does not applyto a record which has to be kept by law.

Some people may want to use section 10 tohave removed from their record factuallycorrect information which they do not wantanyone to see. If you want to take this step,you should have tried all other ways ofgetting your record amended and also haveconsidered what effect removing theinformation could have on your care andtreatment, including on decisions thatmight need to be made in the future.Ideally, you should have discussed this witha professional who understands the contentof your record.

Every NHS and social care organisation willhave one or more people responsible foroverseeing how the information they hold ishandled. This person (or people) may becalled the Caldicott Guardian, theInformation Governance Manager or theData Controller. They may be able to helpand give you more advice.

Note

5 Data Protection Act 1998, section 10 - www.opsi.gov.uk/acts/acts1998/ukpga_19980029_en_ 3#pt2-l1g10

Section 2 - for professionals

In all situations where a person disagreeswith the content of their record, you shouldadd a note of this to the record.

Most examples of disagreements over arecord’s contents seem to be caused byopinions in the record. When we werepreparing to produce this guidance, wewere made very aware of the stigmaspeople suffer when inappropriate orprovocative comments or opinions areadded to their record. We take this veryseriously, and we expect that all health andsocial care professionals will share ourconcerns and always act appropriately.

You should always remember that patientshave a legal right to see their record. Youshould make sure that you fully consider theopinions you plan to include in a record,and that you can justify them as being anecessary part of the patient’s care.

Patients, service users and otherprofessionals can be given access to healthand social care records in circumstancesother than when treatment or care is beingprovided. As a result, when you add yourcomments or opinions to a record, youshould consider how these might be viewedby the patient, service user or anotherprofessional and also how they might reflecton you in the future.

We recognise the challenges of providingtreatment and that the steps in a differentdiagnosis can often blur into opinion. Forthis reason, when you are recording anopinion you should make it clear that it isopinion and, if the opinion came fromsomeone else, include who gave it andwhen. If possible, you should also includethe contact details of the person whoprovided the information.

We believe that you should, whereverpossible, discuss with the patient what youare going to put in their record, as this will

make it less likely that disputes will arise inthe future.

Occasionally, you will need to includeinformation in the record which third partieshave reported to you in confidence. If this isthe case, you should only include thisinformation if you believe it is seriousenough and important for the person’s careto justify including it in the record.Information from third parties should beclearly labelled. Under the Data ProtectionAct, you must take reasonable steps tomake sure the information is accuratebefore you add it to the record, and, ifappropriate, when you next have contactwith the patient.

You should make sure that paper recordsare appropriately structured so that, ifsomeone disputes the accuracy of theinformation, you can include that person’sview in such a way that their concerns are clear.

In our advice to service users and patientswe have been very clear that the first thingthat they should do if they are concernedabout the content of their record is to talkto the person who created the entry or theperson who now holds the record. It is clearthat good communication with people onwhat the information means, its context,why it has been recorded and how ‘fact’may be different from ‘opinion’ are vital insettling most concerns. It is important thatyou give enough weight to the patient’sview and include in their record when andhow it conflicts with your own.

If information in a record is foundto be factually inaccurate

In paper records, in line with professionalguidelines, you should keep the informationin the record, but cross it out with a singleline and add an entry to explain theproblem and any consequences it may have.

Guidance for health and social care professionals



If reports or results have been included inthe wrong record, you should move theseto the correct record and, if necessary, add anote to the record explaining whathappened and where the report or resultscan be found if they are needed. You do,however, need to make sure that youmaintain the confidentiality of the personwhose information was wrongly filed.

The same principles apply to electronicrecords, and you should always add clearentries to identify the changes you have made.

There will be times when you are asked tocompletely remove some of the content ofthe record so that there is no trace that itwas ever there, and we have explained inprevious sections (page 8) why we feel thatthis should only be done in exceptionalcircumstances for paper records and not atall for electronic records. It is important thatyou discuss this fully with the patient orservice user. You may also want to getadvice from your Caldicott Guardian or, forhealthcare, from your medical defence

organisation or another appropriate person.

Patients may not know that makingchanges to an electronic record leavestraces which cannot be completelyremoved. You may need to explain that thisfact can protect your and their interests if adispute arises and cannot be settled.

If you send information to records which areused by more than one organisation, it isgood practice to have an agreed policyabout how you will jointly manageamendments that are made to the records.

The approach above is emphasised inprofessional, regulatory and ethicalguidance, all of which stress the importanceof accurate information and goodcommunication. Both the Medical DefenceUnion and the Medical Protection Society(who offer doctors advice and protectionagainst claims) agree that where there is adispute that cannot be settled, adding anote to the record which explains thedispute is the best way of dealing with the issue.

Guidance for health and social care professionals


Parents and young people

Our guidance applies to any record whichfits our definition (‘information related tothe provision of health or social care whichidentifies the patient or service userpersonally’), whether the record relates toan adult or a child.

However, as children’s use of our guidancewill change as they grow up and becomemore able to make decisions for themselves,and children’s records may containinformation about their parents, we thoughtit appropriate to explain how our guidancewill normally apply to children’s records.

This is a complicated area. While we havedone our best to explain the situation, theremay be exceptional circumstances where theinformation which follows does not apply.

Advice to parents (‘parents’ includes allthose people who have parental responsibility)

1 If your child is not able tounderstand and make decisions

You can see your child’s record and askfor changes to be made to the record asexplained in this guidance. This can beinformation about your child or aboutyou as their parent. If the changes arefelt to be in your child’s best interest,they will be made.

2 If your child is felt capable ofunderstanding and making decisions

a You can ask to see the information inyour child’s record, but your child willbe asked for their agreement first. Ifyou are allowed to see your child’srecord, you can ask for changes to bemade to information about your child,as set out in our guidance, but theywill be asked for their agreement.

b You can see and have changes madeto the information about you in your

child’s record. Your child will not beable to see this information withoutyour agreement and you can hide thisinformation from them.

Advice to young people

Your record will contain information aboutyou and might contain information aboutyour parents.

1 If you are under the age of 16 and theperson who keeps your record thinksthat you are able to understand andmake decisions, you can see your record.You will be shown your own information,but if there is any information in yourrecord about your parents you cannotsee this without their agreement.

Your parents can see any informationabout them in your record without youragreement. However, you will be askedfor your agreement before your parentscan see the information about you inyour record.

2 You can ask for changes to be made tothe information in your record which isabout you, as we have explained in this guidance.

3 If your parents have given youpermission to see the information aboutthem in your record, you can ask for thisto be changed, as explained in thisguidance. However, your parents will beasked for their agreement first.

Parents and young people

If you disagree about who can see thecontent of a record or ask for changes, yourlocal council’s social services department oryour local hospital or GP practice will askthe advice of their Caldicott Guardian (asenior staff member who is responsible forprotecting the privacy of patients andservice users).

Appendix 1


What the law andprofessional guidelines sayabout recordsIn line with professional guidance andunder their contract of employment (andsometimes the law), health and social careprofessionals must keep records. It is notpossible or sensible to receive eitherhealthcare or social care without somerecords being kept.

The Data Protection Act 1998 is the mainrelevant law. The Act refers to ‘processing’data which covers collecting, storing,gaining access to, using or changinginformation.

The Act:

• gives people a legal right to see theirrecords;

• makes it a requirement that anyinformation held is accurate and, whereappropriate, kept up to date;

• gives people the right to have factualinaccuracies in their records put right;

• can be used to ask that an opinionwhich is factually incorrect is changed orremoved from a record (an opinion is notnecessarily factually incorrect justbecause someone else, even anotherclinician or social worker, disagrees withit); and

• can be used to ask that information isnot processed if it is causing significantunnecessary damage or distress.

The Act does not:

• give people the right to ask forprofessional opinions to be amended,unless they were based on factuallyincorrect information (or unless section10 of the Data Protection Act is used -see page 13); or

• allow people to insist that their recordsare kept in one format rather thananother (for example, paper rather thanelectronic). Also, it does not allowpeople to say where in the UK theirrecords will be kept, other than that theymust be stored securely.

Section 10 of the Data Protection Act allowsa person to ask that an organisation stopsprocessing information it holds about them,on the grounds that the processing is likelyto cause that person significant unnecessarydamage or distress. (The actual words usedin the Act are ‘substantial andunwarranted’.) However, this is acomplicated part of the Act, and there areseveral circumstances where it does notapply. Requests made using section 10 mustdemonstrate why processing is causingunnecessary damage or distress and areconsidered case by case. There is moreinformation on section 10 on page 13.

The Information Commissioner’s Office haveissued guidance (a ‘Good Practice Note’ -see note 6 on the following page) whichconfirms that the Data Protection Act 1998covers any expression of opinion about anindividual. However, it does not lay downspecific rules about what should or shouldnot be recorded as an opinion, other than itshould be the minimum necessary for the purpose.

The guidance explains that opinions shouldnot include irrelevant material. However, italso says that neither believing that anopinion contains irrelevant material, northat an opinion has failed to take accountof information which is believed to beimportant, are reasons for using the DataProtection Act 1998 as the basis for askingfor an opinion to be removed from a record.

There is no law which deals directly withdisagreements over professional opinionswhich are not factually incorrect.

Appendix 2


The Access to Health Records Act 1990 (seenote 7 below), which applied to records puttogether after 1 November 1991, gavepatients the legal right to have a commentadded to any entry in their health recordthat they disagreed with. This right was lostwhen the Act was replaced by the DataProtection Act 1998, which only deals withissues around factual inaccuracies. Thisdifference was identified as the DataProtection Act 1998 was going throughParliament and the Department of Healthagreed to issue guidance on addingcomments to records.

At the time we produced this document,the Department of Health guidance advisesclinicians to agree to add a comment to arecord if the patient:

• asks for this; and

• has used the NHS complaints procedure;and

• has complained to the InformationCommissioner.

We disagreed with this approach. Webelieve that patients should not have tomake a formal complaint to get a commentadded to their record. We have advised theDepartment of Health that it would beappropriate to revise its guidance on thisand it has agreed to do this.

Both the Medical Defence Union and theMedical Protection Society advise thatadding a note explaining the patient’sconcerns, or offering the patient theopportunity to add information to therecords, is an appropriate way of dealingwith any dispute over an opinion in a recordand maintains good doctor-patientrelationships.

Appendix 2

Notes

6 Information Commissioner’s Office, ‘Good Practice Note’ - www.ico.gov.uk/upload/documents/library/data_protection/practical_application/gpn_recording_and_retaining_professional_opinions%20v1_290408.pdf

7 Access to Health Records Act 1990 – www.opsi.gov.uk/acts/acts1990/ukpga_19900023_en_1


Members of the Working Group

Ian Hayes (Working Group Chair) -public member of the NationalInformation Governance Board (NIGB).

Dr Gillian Braunold - GP and ClinicalDirector for the Summary Care Record,NHS Connecting for Health.

Dr Nick Clements - correspondingadvisor of the NIGB, Medical ProtectionSociety.

Dr John Holden - corresponding advisorof the NIGB, Medical Defence Union.(The Medical Defence Union has notapproved this document.)

Rabbi Sylvia Rothschild - public memberof the NIGB.

Dr Michael Wilks - public member of the NIGB.

The members of the WorkingGroup are very grateful for thehelp and support of those whoprovided evidence to them

The patients and members of the public,who provided very helpful evidence,both by email and in person, but askedfor their details to remain confidential.

Dr Stella Clark, Fife Primary Care TrustMedical Director and Caldicott Guardian.

Dr Emyr Jones, Consultant Physician,Medical Director and Caldicott Guardianat Doncaster and Bassetlaw HospitalsNHS Foundation Trust.

Dr Richard Fitton, GP and CaldicottGuardian at Hadfield Medical Centre,Glossop.

Mr Stuart Dutfield and Mr Alan Hadfieldfor allowing the group to consider ‘TheJoy project’, which was funded by alegacy in memory of Mrs Joy Dutfield.

Johan Taylor, Practice Manager at MarpleCottage Surgery, Stockport.

Dr Mary Hawking, GP at Kingsbury CourtSurgery, Dunstable.

Sarah Egleton, Head of Health Records,Norwich University Hospitals NHSFoundation Trust.

A number of other healthcareprofessionals, who asked for their detailsto remain confidential to protect theidentity of their patients.

Penny Hill, NIGB Public member.

Appendix 3


The Working Group’s responsibilities

Purpose

a To produce a report to the NationalInformation Governance Board(NIGB), which will be made public,outlining the current position,identifying any improvements neededand making appropriaterecommendations.

b To produce the necessary advice andguidance for the NIGB, once theNIGB’s recommendations have been accepted.

Context

When carrying out its review, the WorkingGroup will follow the principles the NIGBworks to. This particularly includes givingpeople who use health and social careservices appropriate control over, and accessto, their own information. This is central tothe role of the NIGB.

Exclusions

The Working Group’s responsibilities do notinclude dealing with:

• the records of patients who have died;

• disputes raised by a third party; and

• mistakes identified through aperformance assessment or clinical audit.

The exclusions raise a number of differentissues and may need to be consideredfurther in the future.

Future work

The Group will consider how the proposedguidance and principles for health recordsmight apply to social care records.

Terms of reference

1 To review the laws and professionalguidelines related to disagreementsover the content of clinical records.

2 To understand the issues associatedwith making changes to records oradding notes about the accuracy ofinformation in records.

3 To understand the differencesbetween paper and electronicrecords, and the consequences ofusing them.

4 To understand whether the NHS CareRecords Service presents anyopportunities or affords anydifficulties in this area.

5 To gather the views of patients andclinicians to provide practicalexamples of this matter.

6 To consider whether corrections ofmistakes should include informationwhich has already been removed orwhich hides the identities of patientsby failing to include names (forexample, in the secondary usesservice).

7 To consult the Information Commissioner’s Office.

8 To involve the Information StandardsBoard in matters relating to thequality of information.

Appendix 4


References

Medical Defence Union advice onmedical records and reports - www.the-mdu.com/section_GPs_and_primary_care_professionals/topnav_Advice_centre_1/nav_Medical_records_and_reports_9. asp

Department of Health, PatientConfidentiality and Access to Records -www.dh.gov.uk/en/Managingyourorganisation/Informationpolicy/Patientconfidentialityandcaldicottguardians/index.htm

NHS Care Records Service - www.nhscarerecords.nhs.uk/what-is-the-nhs-crs

GMC Guidance for Doctors onConfidentiality - www.gmc-uk.org/static/documents/content/Confidentiality_core_2009.pdf

Medical Ethics Today: Its Practice andPhilosophy (2nd Revised edition)ISBN-10: 0727917447- BMJ PublishingGroup. This contains guidance on removinginformation from health records.

Appendix 5

requesting amendments to health and social care records… · requesting amendments to health and...

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