Patients’ attitudes to the summary care record and HealthSpace: qualitative study
BMJ 2008; 336 doi: https://doi.org/10.1136/bmj.a114 (Published 05 June 2008) Cite this as: BMJ 2008;336:1290
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The £ multi-billion programmes for IT in UK health services, are designed to reform the way the health services use information, and hence to improve services and the quality of patient care (1). A key objective of the IT programmes is to connect the records of the patient’s health and care for health care staff. Researchers consequentially focus on information technology to augment the patient’s summary care records (2) rather than on IT to augment the patient’s health recovery process. While the summary care records are being connected, are the health information desires of the patient, family and community being disconnected?
We find in the following hypothetical clinical fragment an illustration of a divergence between patient records and patient health.
An elderly person, attended at home by the local nurse, collapses and is transported supine to the regional hospital’s A&E unit. The patient is assessed by a clinician, then transferred, again supine, on a gurney through corridors broad and narrow, to another hospital wing and elevated in a stainless steel gurney-carrying lift to a new ward. Green marker on white board is the information technology indicating the temporary record address: name of the patient, doctor and nurse.
Subsequently the patient is descended in the same lift, transported along corridors narrow and broad, encrypted in another upward lift, before reaching another ward or world. Doctor’s and nurse’s names on the temporary record address are different and in blue not green marker. The patient’s name on the temporary record is that of the person previously in the bed. The relative location of the patient’s cupboard for false teeth, spectacles, and digital hearing aid [the patient’s IT augmented reality interaction with the real world (3)] differs from the cupboard’s location in the previous ward. When family arrive from the real world and ask what is happening, the patient does not know. A young registrar informs: ‘The patient is being assessed’. The health carers in this ward have no records of the initial A&E assessment.
Family and community members provide information to clinicians on changes in the patient’s behaviour over the previous six months. The clinician emphasises: ‘This information is very useful’, but it is recorded neither electronically nor in the pink dog-eared patient’s file or summary care record. The next clinician receives no record of this family and community provided information. There is no dialogue with the patient about this information. The dialogue with the patient’s family and community members is not continued.
Within the next ten weeks the patient changes ward, or world, no less than six times. The fourth change is by ambulance at night to another hospital. The patient’s name on the temporary record address remains constant, but each time the health carers’ names change. The GP’s record is not accessed. The hospital’s hard copy patient record, the pink dog- eared file, has three inch thick notes in code form which are unreadable and unintelligible to the patient. There is no ‘talking record’, even if the digital hearing aid were connected, which it is not. When the family seeks to locate the patient’s hearing aid, a student nurse rescues both the hearing aid and the pink dog-eared patient record from a previous ward. When patient and family attempt to open the patient record, the ‘surveillant’ staff nurse swoops to retrieve the record although it is marked with the patient’s name - perhaps a pre-cursor of identity loss or ‘institutionalisation’(4).
Community members ferry the patient’s partner for hospital visits. Each morning the partner uses the digital telephone, not directly with the patient, but through the ward nurses for an update on the patient’s health. The response read from the information technology record, a hand written note, is either ‘Everything fine’ or ‘Everything fine, but patient up, shaving and trying to get dressed in the middle of the night’. The patient seeks the harmony of sleep and enjoys being healthy enough to awake, to return to life and shave. The institution requires the patient’s waking at shift change in the middle of the night to complete the summary care record on the drug regime. The normal circadian rhythm of the patient’s former real world is shattered by the ward’s virtual reality requiring the patient to be awakened from sleep to ask whether they desire the prescribed sleeping pill.
Confidentiality issues do occur with the patient’s summary care record. A clinician gazes down upon the seated patient, whose digital hearing-aid is not operational(3) and asks:, ‘Would you mind answering a few questions?' The patient nods, whether in deference, or acknowledging willingness, or indicating ‘Yes, I do mind’. Visiting family and community friends are keen to hear the questions and answers to the psychometric test. Ward patients also crane forward to hear the questions posed, ‘What day of the week is it?’ and ‘Where are you?’ The stress on the patient in front of the gaze of family and onlookers is not unlike the stress on a contestant in Anne Robinson’s television quiz show, ‘The Weakest Link’. The patient does not learn whether or not they were stigmatised as ‘disoriented’. Ironically ‘connected up’ patient records might have informed the patient whether or not they were labelled as ‘disoriented’.
Just as augmented reality IT aeroplane cockpits orient pilots to navigate take-off, so augmented reality IT may orient patient’s journey back to health. The patient’s required information may be, ‘What do I have to do to get out of here quickly to have a good meal at home?’ The essence of augmented reality IT is ‘interactivity in real-time’(5). Discussions and conversations with the carer need to be in real time not after the consultant returns from vacation. Giving control of such information back to the patient rather than strengthening and connecting patient records may shorten recovery periods, and hence improve the health trust’s efficiency audit.
In one light the above clinical fragment emphasises the need for NHS and researcher efforts to augment patient records by information technology connecting up records among all health carers and especially the patient. In another light the fragment provokes a re-reading of a European health care philosopher (6), who emphasized not just connections, but rather ‘conversations’ in the older sense of ‘dwelling together’, which are elemental to augment the patient’s regaining the equilibrium of health. The NHS may consider improving patient health by augmenting such conversations among the patient and all carers with a small proportion of the nation's information technology funding billions.
1 Bourn J Department of Health: The National Programme for IT in the NHS. Report by the Comptroller and Auditor General. National Audit Office. HC 1173 Session 2005-2006 16 June 2006
2 Greenhalgh T Wood G W Bratan T Stramer K Hinder S Patient’s attitudes to the summary care record and HealthSpace: qualitative study. BMJ 2008; 336:1290-1295
3 Cowie R How Academic Can You Be About Hearing Loss and Deafness http://www.hearingreview.com/issues/articles/2001-10_08.asp
4 Goffman E. Asylums: essays on the social situation of mental patients and other inmates.1961; New York: Doubleday
5. Azuma, R T. A Survey of Augmented Reality. Presence: Teleoperators and Virtual Environments. 1997 6, 4; 355–385
6 Gadamer HG Treatment and Dialogue in The Enigma of Health:The Art of Healing in a Scientific Age 1996; Trans J Gaiger and N. Walker. Cambridge Polity Press.125-140
Competing interests: None declared
Competing interests: No competing interests
Greenhalgh et al provide valuable insight into patients’ hopes and fears for the proposed centrally stored medical record [1]. We note with interest the predominant themes of these concerns, particularly those surrounding computer security and inappropriate access. In individual interviews 11 patients (11%) expressed such concerns as justification to reject or at least remain undecided as to the benefit of a Healthspace account.
Electronically stored patient information remains topical, both in relation to security [2, 3] and recent high profile breaches of this [4]. However, these concerns must be viewed in the context of current arrangements. Human links in the patient record chain are far more vulnerable to error, and we have been alarmed at the ease with which we have obtained confidential patient details by telephone.
Faced with incomplete demographic details in an audit, we attempted to complete gaps in addresses, contact numbers and current treatments by telephoning patients’ own GP surgeries. We contacted 45 different GP receptions for information regarding 51 patients, successfully obtaining patient addresses and/or telephone numbers in 50 of these cases. In over a third of phone conversations no information or verification was requested in order to obtain this information. In the one unsuccessful case the receptionist had asked for verification of our identity, which we were unable to provide over the telephone.
We greatly appreciate the ease with which GP receptionists assisted us, however it would seem that such help is potentially open to abuse by anyone with a convincing medical story “calling from the hospital”. Such a story easily overcomes natural safeguards; hacking into a Healthspace account would be considerably more difficult.
The current debate surrounding electronic medical record security should perhaps re-focus on the current potential for breaches rather than conceptual ones in the future.
J.E.F. Fitzgerald, Specialist Trainee, General Surgery.
A. Nikkar-Esfahani, medical student.
A.A.B. Jamjoom, medical student.
K.K. Shah, medical student.
A.G. Acheson, Consultant Colorectal Surgeon.
Nottingham University Hospitals NHS Trust, Nottingham, NG7 2UH.
Competing interest: none declared.
1. Greenhalgh T, Wood GW, Bratan T, Stramer K, Hinder S. Patients' attitudes to the summary care record and HealthSpace: qualitative study. BMJ (Clinical research ed 2008; 336: 1290-5.
2. McGilchrist M, Sullivan F, Kalra D. Assuring the confidentiality of shared electronic health records. BMJ (Clinical research ed 2007; 335: 1223-4.
3. Chhanabhai P, Holt A. Consumers are ready to accept the transition to online and electronic records if they can be assured of the security measures. MedGenMed 2007; 9: 8.
4 The Daily Telegraph newspaper. Data loss crisis spreads to the NHS 2007 http://www.telegraph.co.uk/news/main.jhtml?xml=/news/2007/12/23/ndata223.xml
Competing interests: None declared
Competing interests: No competing interests
In the qualitative study of patient’s attitudes to the summary care record and Healthspace by Greenhalgh et al, the focus group raised the issue of data quality standards. There may be a problem with the accuracy and completeness of computerised medical summaries in primary care due mainly to errors in the transfer of information from the written medical records. Most practices stopped using written records several years ago, so most of the inaccuracies relate to the past medical history rather than current medical problems. Some of the mistakes that I have come across when checking the computerised medical summaries of new patients against the written notes and letters are as follows;
1) A diagnosis had been coded and entered into the summary when the consultant’s letter has actually stated that the patient did not have this condition.
2) A provisional diagnosis had been entered as a definite diagnosis, even when it had later been excluded, eg. schizophrenia, epilepsy.
3) The wrong Read code had been used.
4) An important diagnosis had not been listed in the summary.
5) Clinical information appeared to have been misunderstood.
In order to produce high quality data, the medical records summarizers need to be well trained, ideally having a clinical background. They also need enough time to do a thorough job. Quickly scanning through letters for diagnoses without reading the sentences leads to errors. Another problem is that if the computerised medical summaries are simply copied when patients move to a new practice, mistakes are propagated. When computerised records become transferable between all practices the written notes will probably not even be looked at. Now is the time to check that this written information has been accurately transferred.
It is tempting to believe that if it is on the computer it must be right. More research into the accuracy and completeness of these medical summaries is urgently needed, particularly if this data is going to be used to build a central database. In the meantime, perhaps GPs need to check the data with their patients and, where this raises doubts, check the written records.
Dr PJF Smith
Former GP, medical records summarizer, student counsellor.
Stockport, Cheshire
Competing interests: None declared
Competing interests: No competing interests
Primary / Secondary Care Information sharing improves specialist care: the need for us to stay at the cutting edge
We write in response to recent articles (1-3) discussing the perceived dangers of the shared electronic patient record, specifically in relation to protection of patient confidentiality. While respectful of the concerns raised, in one Primary Care Trust (PCT) area, we have demonstrated that developments in one of the GP providers systems, through Web based software (4) with data held centrally, in combination with tightly policed access, permit secure information sharing across organisational boundaries, between GP practices and secondary care. This results in direct improvements in decision making, particularly in the context of chronic disease management in the outpatient clinic setting.
Our pilot project has been based in the Central and Eastern Cheshire PCT (CECPCT), UK, where diabetes and endocrinology clinicians (only) can now access a summary of the patient’s primary care electronic patient record (EPR), enabling them to make informed decisions at the point of care.
Practices in the CECPCT area all participating in this pilot project, are streaming information in real time from their former patient management system (EMIS LV)(4), largely established in the 1990s into a web based version of EMIS, enabling diabetes / endocrinology specialist teams and potentially other health care providers to view the information through a Web browser.
The clinicians, including consultants, specialist registrars, senior podiatrists, dieticians and diabetes specialist nurses – can access details of medication, allergies, and previous diagnoses.
After logging in and searching for the patient, the GP summary care record appears on the screen as a ’Read-only’ document. Consent is given by the patient at the hospital and audited in the system.
Accessing primary care information can afford a radically different perspective on the patient’s condition and provides important extra information about patient care at the GP end. It offers a potential frameshift in the way that chronic diseases are managed.
Importantly, none of the patients who have participated in the project has refused access from the specialist team to their primary care record and the majority are surprised that specialist team clinicians do not have this access already. Specifically we have received very positive feedback from patients, as they recognise the value of sharing information to improve their own health care, and health outcomes for the wider community.
The next phase of the project will allow hospital clinicians to record certain details from the consultation into a template, that will be added to the patient’s record in real-time. The patient’s GP will then be able to view this back at the practice.
With more than 80 per cent of practices in the PCT using EMIS systems, it is anticipated that the process will soon become available to other specialist clinics within the hospitals and also the provider arms of the PCT.
In a separate development, the search and report facility through the new software means that as well as looking at individual patient information it is possible to take a longitudinal view of trends, such as how patients are responding to medication across a variety of measures such as blood pressure and glycaemia. For example in one large GP practice with 430 patients with type 2 diabetes, we have recently shown that since 2002 there has been no significant further reduction in HbA1C from 7.3%, just below the GMS target (5). We speculate that this is powerful evidence for the impact of a nationally agreed target on outcome in a primary care setting.
It is anticipated that having patient data held centrally with the capacity to combine outcome variables across GP practices with varying socio-demography, will help us to plan health services for the future across our PCT.
While there are legitimate concerns about whether patient information recorded in primary care is secure there needs to be greater trust between the data guardians (GPs) and specialist provider teams who need access to this data for legitimate reasons. This will reduce preventable errors and improve access to vital information.
Our pilot project in Cheshire has proved the value of information sharing across organisational boundaries. This opportunity should not be missed, for the sake of our patients.
No author has any competing interests
1) Kidd M. Editorial. BMJ 2008; 336: 1029-1030
2) Cross M. BMJ 2008; 336: 1090-1091
3) Greenhalgh T, Wood GW, Bratan T, Stramer K, Hinder S. BMJ; 336: 1290- 1295
4) http://www.emis-online.com/primary-care-systems
5) Tahrani A, McCarthy M, Godson J et al. Br J Gen Pract 2007; 57: 483- 485
Competing interests: None declared
Competing interests: No competing interests