Information Technology

Should patients be able to control their own records?

BMJ 2012; 345 doi: http://dx.doi.org/10.1136/bmj.e4905 (Published 30 July 2012)
Cite this as: BMJ 2012;345:e4905

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Issues related to medical records are somewhat different in India where vast majority of Indians seek treatment sequentially / concurrently / in any order from multitude of treatment providers in public / corporate / private sector, from multiple treatment system, whether it be Allopathic, Alternative (including AYUSH - Ayurvedic / Unani / Siddha / Homeopathic), or faith-healing etc. depending on their preference and affordability. Patients approach different treatment providers with different expectations, whether generalists or specialists, based on their own understanding of problems, word of mouth, guided by others or by way of referrals.

Evolution of such system has resulted in patients being routinely given consultation cum investigation advice cum prescription documents, investigation reports, procedure outcome reports and admission / discharge summaries by most of allopathic treatment providers for each visit. With this state of play, importance of treatment provider maintained medical records gets diminished, irrespective of its quality or whether paper or electronic.

It is common sight to see patients having hoard of medical prescriptions, investigations, medical procedure details and discharge summaries etc of entire family from prior consultations, with variable and fluctuating awareness of its significance. Going through this unorganized heap of papers is a time consuming and intimidating task, but often yields invaluable clinical information pertinent to current management, saving precious resources and ensuring better clinical management.

This observation prompted us to launch a patient education initiative to chronologically organize all medical prescriptions / investigations / discharge summaries in one place for each family member separately. This Patient Treatment Record (PTR) contains reasonable amount of chronologically organized medical data at one place and is exclusive property of patient, who owns it, safeguards it and makes it available to only those he trusts.

PTR empowers patients to become knowledgeable stakeholders, reduces cost to patient and health care system, improves doctor patient communication and treatment adherence, improves communication in multi-morbidity patients between multiple treatment providers, limits unauthorized access and serves as a valuable teaching/training opportunity for trainees. Its downside appear modest in comparison to its upsides. More than a thousand patients with PTR now attend our clinics.

PTR is a negligible / low cost solution to organize medical data already available to patients in health care systems similar to India, is easily implementable and maintainable by non medical personnel / family members with minimal training and supervision.

Competing interests: None declared

Sanjay Agrawal, Professor of Psychiatry

GB Pant Hospital, Maulana Azad Medical College, JL Nehru Marg, New Delhi 110 002, INDIA

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Peter Davies’ recent report on patient controlled health records (BMJ 2012;345:e4905 ) effectively puts the case for enabling competent patients to take control of their records. Those responding have also made clear the benefits for patient care that can come from the patient themselves effectively ‘proofreading’ their records.

In paediatrics, things are not so clear cut. Where patients are not competent to control their own records there is a choice – either not to offer the system for children or to entrust their carers – usually their parents – with control of their records.

The overwhelming majority of those taking care of children would undoubtedly take this responsibility seriously. We must necessarily be mindful, however, of the tiny minority who could take advantage of such a system to cover up traces of their abuse.

The Climbie Inquiry recommended that concerns about deliberate harm of any child should form part of the child’s permanent health record. If, as suggested in the article, patients or their carers “control their records, with the right to decide who may access them,” then the safety of vulnerable children must be a serious consideration.

Competing interests: None declared

David Low, Designated Doctor for Safeguarding & Consultant Paediatrician

John Pettitt, Ethics Manager, Royal College of Paediatrics and Child Health

Royal College of Paediatrics and Child Health, 5-11 Theobalds Road, London, WC1X 8SH

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The UK Prime Minister David Cameron proposed plans to make anonymised patient data available for research purposes, with the proviso that individuals can opt out of their anonymised data being reused for research(1). In a recent BMJ feature, Davies asked if patients should be able to control their own medical records(2). In principle, like others, I would say ‘yes’. But uneasiness re patient data access and reuse makes me wary. Anderson recently argued that the difficulty of protecting privacy by anonymising data is an inconvenient truth ignored (so that medical records can be sold off)(3). I would argue that the move to patients’ control of their own records is a further inconvenient truth ignored: it will benefit research before patients.

Delamothe noted how patients will be able to quickly and usefully consent to data sharing (with research) if they control their data (4). This might be music to the ears of researchers who feel that current legislation stifles the UK’s chances of producing world class science because it inhibits access to anonymised patient data (5). If patients become their own data controllers, there will not be the need for Caldicott Guardians to act as third party custodians for patient’s data. Instead research will bypass the middle man and be able to directly approach patients to seek permission for access to their data for research purposes.

This will benefit research before it does patients because making patient medical records easily accessible to research will make electronic records research more attractive to investment (6). Yet the public debates before the Health and Social Care Bill was passed by the UK parliament highlighted a level of aversion to industry profiting from healthcare. Patients may therefore not be happy if their data were used to attract research investment as this might be seen as industry profiting from people’s medical history.

1. www.bbc.co.uk/news/uk-16026827 Accessed December 2011
2. Davies P. Should patients be able to control their own records? BMJ 2012;345:e4905
3. Anderson R. The privacy of our medical records is being sold off. http://www.guardian.co.uk/commentisfree/2012/aug/28/code-practice-medica... Accessed August 2012.
4. Delamothe T. Towards a unified theory of patient data. BMJ 2012;345:e5678
5. Sample I. NHS patient records to revolutionise medical research in Britain. http://www.guardian.co.uk/science/2012/aug/28/nhs-patient-records-medica... Accessed 29 August 2012.
6. Nicolson DJ. Two Views: Should our NHS records be used for research? People and Science June 2012.

Competing interests: None declared

Donald J Nicolson, Research Fellow

None, Forfar

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30 August 2012

A single electronic record spanning home, primary, secondary and tertiary care remains a pipe dream. As Dr. Al-Ubaydli has acknowledged,[1] patient-held and controlled paper records have long been recognised in the NHS as open, transparent and reliable. They fully support shared care patterns of work. They are popular with patients and have been successful in maternity care for the past 20 years[2] and not only in the UK. A standardised hand-held mother and child record first introduced in the 1940s is still in use in modern efficiency-aware Japan and variations are used in several other countries.[3]

There are inevitable limitations to both paper-based and electronic-only record systems despite limited successes of the latter in discrete settings. For instance, current technology does not yet allow the electronic documentation of a massive postpartum haemorrhage while it is happening, paper hand-held notes are not confidential if a woman has a violent partner, and data re-entry into multiple incompatible systems is an outrageous waste of health professional time, especially midwifery.

Regardless of future feasibility, a one-size-fits-all approach is not currently practical. In the short term at least, we need hybrid solutions that incorporate the best of both worlds: a revolution in thinking about connectivity from the bottom up, that must include the most vulnerable of patients – a record that works even for the elderly or demented patient without a smartphone. There is great merit in the concept of a minimal ‘hub’ which comprises both paper and electronic records that could be located with the patient or the GP (or both), with patients controlling their data and clear audit trails showing who accessed them, when and why.[4]

Such a solution requires a blend of the energy and enthusiasm of the creative and technically competent, as typified by the NHS Hack Day[5] and HANDI[6] initiatives, combined with the wisdom and experience of those who have already ‘been there’ and seen the mayhem of ‘good ideas gone wayward’. To ensure interconnectivity and relieve the keystroke burden of data collection we need to focus on the input data, asking the right questions in a logical, flow-patterned sequence[7] rather than continuing to pour more good money after bad[8] with a striking lack of evidence of benefit to patients.[9]

REFERENCES

[1] Al-Ubaydli M. Patients must have control of their medical records. BMJ 2012;345:e5575
[2] Brown HC, Smith HJ. Giving women their own case notes to carry during pregnancy. Cochrane Database of Systematic Reviews 2004, Issue 2. Art. No.: CD002856. DOI: 10.1002/14651858.CD002856.pub2.
[3] Nakamura Y. Maternal and Child Health Handbook in Japan. JMAJ 2010 53(4): 259–265
[4] Delamothe T. Towards a unified theory of patient data. BMJ 2012;345:e5678
[5] http://nhshackday.com (accessed 28 August 2012)
[6] http://www.handihealth.org (accessed 28 August 2012)
[7] Fawdry R, Bewley S, Cumming G, Perry H. Data re-entry overload: time for a paradigm shift in maternity IT? J R Soc Med. 2011 Oct;104(10):405-12.
[8] House of Commons Public Accounts Committee. Forty-Fifth Report. The National Programme for IT in the NHS: an update on the delivery of detailed care records systems. 1. Progress in implementing the systems and value for money to date. UK Parliament, 2011. http://www.publications.parliament.uk/pa/cm201012/cmselect/cmpubacc/1070... (accessed 28 August 2012)
[9]Greenhalgh T, Hinder S, Stramer K, Bratan T, Russell J. Adoption, non-adoption, and abandonment of a personal electronic health record: case study of HealthSpace. BMJ. 2010 Nov 16;341:c5814.

Competing interests: RF is the originator of the Electronic Encyclopaedia of Perinatal Data (EEPD). He has served on virtually all UK national maternity notes and IT projects since 1980. From 1990-2001 he was reimbursed by Protos(now iSoft Evolution) for the use of his expert medical knowledge. He has had no commercial connection with them, or any other company, since 2001. HP is a volunteer coeditor of EEPD sections.

Susan Bewley, Professor of Complex Obstetrics

Helga J. Perry, Grant P. Cumming, Rupert Fawdry

Kings College London, susan.bewley@kcl.ac.uk, 10th floor North Wing, St Thomas' Hospital Westminster Bridge Rd London SE1 7EH

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In addition to being able to access records and possibly control them patients must also be able to understand their records. It is often difficult even for experienced doctors to understand the medical records of other doctors, especially those from another speciality, including different general practice records.

In order to understand a record and the decisions contained in it, it is very important to have a summary that lists what the patient is consenting to have done. The next step is for the summary to link this to the reason for each action. This can be a diagnosis or differential diagnosis (it may be some self limiting unspecified condition – the patient needs to know this too). The final step is to link the diagnosis and actions to their related findings. This is the ‘patient’s evidence’: the presentation, supportive evidence and marker(s) of progress. In the patient controlled records of ‘patients know best’ patients are advised to enter this information [1].

This information can be summarised in a number of ways as explained in the Oxford Handbook of Clinical Diagnosis [2]. I would suggest that a copy of such a ‘patient’s evidence’ based summary should be inserted into every record (to help doctors and other health professionals as well as patients) and kept up to date, whether controlled by the patient or not. The GMC requires that such information is provided to patients anyway when seeking informed consent or when allowing patients to participate in decisions about their care [3].

References

1. Al-Ubaydli M. Patients Know Best. http://help.patientsknowbest.com/Diagnoses.html

2. Llewelyn H, Ang AH, Lewis K, Abdullah A. The Oxford Handbook of Clinical Diagnosis, 2nd edition. Oxford University Press, Oxford 2009, pp29-43.

3. General Medical Council (2008). Consent: patients and doctors making decisions together. http://www.gmc-uk.org/guidance/ethical_guidance/consent_guidance/part1_p...

Competing interests: None declared

Huw Llewelyn, General physician and endocrinologist

Aberystwyth University, Penglais, Aberystwyth, Ceredigion, SY23 3BZ

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I agree with the general view presented by Davies (BMJ 2012;345:e4905) but he is only correct in saying that evidence on the effects "is hard to come by" if both "patients access to" AND "control of records" are the search conditions. There have been many studies over three decades on the effects of giving patients access to records including randomised controlled trials [e.g. 1-4]. Reviews of the literature are also available [5-7]. Studies of patient control are more scarce but the one study that Davies cites [8] was not, in any case, of patient control.

While many research studies were never translated into routine practice there have also been numerous examples of routinely giving patients access to their records using the technologies of the time. For example, patients at Fisher's general practice were routinely given access to their paper records since before 1986 [9], and at Nottingham diabetes clinics given copies of their computer-printed summary since 1979 [10]. The latter included studies of withholding or censoring the information given to patients [11,12].

While Davies is right to say that there have been some 'false starts' in patient access to online records, those false starts, along with research studies such as those above, have probably contributed to changes in attitude and the development of an understanding of why and how to give patients access and control. Remember that in 1980 hospital case records routinely had 'not to be handled by the patient' in bold large letters on the front and senior medics argued against patient access [13]. For once, a Government strategy is not just based on fad or dogma, but on published research, as well as the excellent work and experience provided by Hannan, Al-Ubaydli, et al. In answer to the question in the article title... yes, of course patients should be able to control access to their own medical records.

References
1. Jones R, Pearson J, McGregor S, et al. Randomised trial of personalised computer based information for cancer patients. BMJ 1999; 319: 1241-
2. Jones RB, Atkinson JM, Coia DA et al. Randomised trial of personalised computer based information for patients with schizophrenia. BMJ 2001; 322: 835-
3. Jones RB, Pearson J, Effects of different forms of information produced for cancer patients on their use of the information, social support, and anxiety: randomised trial. BMJ 2006; 332: 942-
4. Drury M, Yudkin P, Harcourt J, et al. Patients with cancer holding their own records: a randomised controlled trial. Br J Gen Pract 2000; 50: 105-110.
5. Gilhooly ML, McGhee SM. Medical records: Principles and practicalities of patient possession. J Med Ethics 1991; 17: 138-143.
6. Laughame R, Stafford A. Access to records and client held records for people with mental illness: A literature review. Psychiatric Bulletin 1996; 20: 338-341.
7. Ross SE, Lin C-T. The effects of promoting patient access to medical records: a review. J Am Med Inform Assoc 2003; 10: 129-138.
8. Walker J, Leveille SG, Ngo L et al. Inviting patients to read their doctors' notes: patients and doctors look ahead: patient and physician surveys. Ann Intern Med 2011; 155: 811-819.
9. Baldry M, Cheal C, Fisher B, et al. Giving patients their own records in general practice: experience of patients and staff. BMJ 1986: 292: 596-598.
10. Jones RB, Hedley AJ, Peacock I et al. A computer-assisted register and information system for diabetes. Meth Inf Med 1983; 22:4-14.
11. Jones RB, Hedley AJ. Patient-held records: censoring of information by doctors J Roy Coll Phys 1987; 21: 35-38.
12. Jones RB, Hedley AJ, Allison SP et al. Censoring of patient-held records by doctors. J Roy Coll Gen Pract 1988; 38: 117-118.
13. Ross AP. The case against showing patients their records. BMJ 1986; 292: 578.

Competing interests: None declared

Ray Jones, Professor Health Informatics

Plymouth University, Faculty of Health, Education, and Society 3 Portland Villas, Plymouth PL4 8AA

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I would like to congratulate Peter Davies on an excellent resume on the subject touching on some of the key issues that exist and some excellent comments raised by a consultant, a GP trainee as well as a medical student.

We at Haughton Thornley Medical Centres have been offering our patients access to their full GP electronic health record for over 6 years now and just under 2000 patients currently have access to their records. http://www.htmc.co.uk/pages/pv.asp?p=htmc0328
18% of our asthma patients and 19% of our COPD patients have access to their records and could present this to any clinician / carer / spouse or whomsoever they wish to anywhere in the world where the need arises. If thy choose to share their passwords with their loved one and were to collapse and become unconcscious (eg Acute asthma) then their loved one could put the passwords in. Alternatively we encourage patients to carry MedicAlert bracelets on their person or to have a contact number ICE (In Case of Emergency) so that emergency crew can phone the number and get urgent information about the patient. As soon as the patient regains consciousness and feels the need to change their passwords, they can do so themselves without needing anybody else to do it for them.

I would like to reassure people that presently with the system we have (EMIS / PAERS), patients can only view their record. They are unable to edit it or delete it. You can have a go and see what a record looks like by looking at our Test Patient whose details are here. http://www.htmc.co.uk/pages/pv.asp?p=htmc61

And here is Haughton Thornley Medical Centres take on privacy, confidentiality, security and the need to share information for patients. This is all part of our informed, explicit consent process.
http://www.htmc.co.uk/pages/pv.asp?p=htmc140

You can also see how patients can sign up for access to their records by clicking on the link below. Patients have the opportunity to learn about the benefits as well as some of the challenges too.
http://www.htmc.co.uk/pages/pv.asp?p=htmc60 and can even watch YouTube videos of myself as well as a patient describing what it means from a patient's perspective too.
http://www.htmc.co.uk/pages/pv.asp?p=htmc93

But then they have to take a "test" to show their competence (and also so that we as Data Controllers can check that they are capable and safe to access their records too). Do have a go and do the online questionnaire to see what questions we ask. All patients have had to complete this before they are granted access to their records.
http://www.htmc.co.uk/pages/pv.asp?p=htmc0378

As patients are accessing a "tethered electronic health record", they cannot lose the record itself. (If they lose their passwords or think somebody else has managed to get them then they simply inform the practice and we can either reset the passwords or switch off the access at our end). This means they can have access to the records whilst we still retain the data for our back office functions too eg audit, clinical review of cases etc.

Patients cannot yet automatically add things to the record although of course during consultations they tell us things which we duly record. But of course as clinicians we should actively listen to them, decipher what they are telling us and write a salient history, examination findings, order appropriate tests and investigations and agree a joint management plan (shared decision making) which the patient can then review at leisure later if they wish to.

Joan Saddler, the National Director for Patient and Public Affairs at the DH was invited by our Patient Participation Group to come and meet with a select group of patients who have access to their records last week. The event was recorded and you can watch for yourself and hear what patients themselves have to say and what it means for them too. You can also see how I explained things too as a GP as well as what the organisation (Haughton Thornley Medical Centres is doing too)
http://www.htmc.co.uk/pages/pv.asp?p=htmc0412

Clearly the practice-based web portal is critical to the success we have enjoyed because it allows people to learn for themselves in their own time from anywhere in the world (and who knows maybe even Curosity could watch this from Mars if it is seeing my tweets @amirhannan :-)

Large scale change is difficult. Joan Saddler talks a little bit about her role and what she is doing, I briefly talk about 'The online relationship with healthcare and how it supports the Partnership of Trust" based on our experiences and working with Glen Griffiths who helped to build the practice-based web portal.

I am now actively working on how to build on the experiences of those who are offering records access themselves and working with the RCGP and the DH as well as colleagues in NHS North and of course my own patient population who are now showing the world what this really means for them and in so doing what it means for us. There are still many challenges that remain both inside the practice as well as outside but I am confident they are not insurmountable.

We have been offering patients access to their records now for over 6 years and not had a single problem. But we have worked hard to provide the right support, guidance and help to ensure its success. Funding will be critical for further rollout amongst a host of other things too.

"Patients, carers and information are the most under-utilised resources the NHS has" (Dr Richard Fitton & Dr Amir Hannan 2010)

Competing interests: I am the Primary Care IT clinical lead and a member of the Health Informatics Clinical Advisory Team at NHS NW.

Amir S Hannan, Full-time General Practitioner

Haughton Thornley Medical Centres, Thornley St, Hyde, Cheshire, UK, SK14 1JY

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I would like to thank the author for a thought provoking article that raises many questions about the evolving relationship of doctors and patients.

I would like to point out to the author that patients are already controlling their own records in the NHS and with a great degree of success.
In obstetric care in the UK it is common practice for a woman to have her own set of notes for the duration of her pregnancy. She keeps these in her own posession and are reviewed as necessary with various members of the obstetric team over nine months.

Since these notes are part of a national scheme, should a woman move to another part of the country, the notes will move with her and this can potentially provide excellent continuity of care in my opinion.

Patients have reported to me that they feel it can offer a real sense of ownership over their health and I believe this is conducive to the holistic care we all apsire to, in what is physically and emotionally a very important time for them.

However, whilst this article prompts further thought and debate on the issue, I do not feel the author touches on any solutions to the potential difficulties encountered with entirely patient controlled records and therefore any feasability in terms of implementing them on a larger scale.

What if the patient loses their notes? Will patients grasp medical semantics in a manner that will be meaningful to them and if not, could this lead to a greater harm with respects to the doctor-patient relationship?

Competing interests: None declared

Junaid Hussain, GPST1 Trainee

Trafford General Hospital, Urmston, Moorside Road, Davyhulme, M415SL

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I am certainly in favour of providing paperless systems for patient notes (I will be an FY1 this time next year), and improving access for patients to their notes will improve patient empowerment. However, it strikes me as worrying that patients will be able to add to their notes at their leisure while booking an appointment as described by this article.

My previous encounter with patients accessing and modifying notes has not been encouraging. On my elective in Sub-Saharan Africa patients had access to their notes and were able to modify them as long as they had a similar pen to do so. This gave them the freedom to modify the more culturally unacceptable, yet clinically essential diagnoses, such as HIV/AIDS.

I am sure that any new system being proposed will guard against this from happening however it would be pertinent to remember that these days there is no system which cannot be hacked.

Competing interests: None declared

Elizabeth Jean McClenaghan, Final Year Medical Student

BSMS, Brighton

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In reading the title of this article I intially thought, "they mean read not control". As I read it I realised that the authors were in fact suggesting a medical record not only open to the patient but closed to clinicians unless given access by the patient.

For many doctors, the reaction to the thought of patients reading their notes is one of alarm. However in the last few years it has become my clinical practice to copy my clinic letters to patients all of which contain a letterhead with my email address at the top. This has not led to a deluge of inappropriate emails, but rather has improved the standards of communication I have with my patients.

I have not felt obliged to tone down the clinical language of my correspondance; if there are things that the patients don't understand they know that they are able to bring the letter with them to their next clinic visit to discuss or even email me directly.

The issue of the patient limiting access to the clinical record does give me some concern. I appreciate the arguement that it is the patients' human right to have access to their notes, however it is also in their best intrests that a clincian should be able to access their health records at short notice if a clinical need arises. Obviously isolated cases of inappropriate access of records must be dealt with, but in the main I suspect that the majority of access would be clinically justified.

I support the idea of a shared electronic medical record, this should allow the patient and clinicians access and track all 'views' and 'changes'. Security and confidentiality could be ensured by the patient initially nominating a core list of clinicians with full access to the record. In an emergency, access to the record by a doctor could be immediate with an electronic notification to the patients that a new user had accessed the record.

Of course this all pre-supposes that the finance and infra-structure to put such a complex system in place exist.

Competing interests: None declared

Elizabeth M Hadley, Consultant Respiratory Physician

Barking, Havering & Redbridge NHS Trust, London

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