Modern records, new challenges
Clinical Director, Summary care record & healthSpace programmes NHS Connecting for Health and GP in NW London
E-mail: gillian.braunold{at}nhs.net
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Abstract |
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 TOP Abstract The GP curriculum and...BackgroundMedical records--what are they...Hosting of records in...Clinicians differ in their...Ethical obligationsInformation governance...ConclusionReferences |
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Our clinical records are changing. The familiar world of a patient's record being kept by a general practice with no links to the outside world has already passed. New ways of working are arriving on our desktops daily. This paper looks at the implications of these changes.
The vision is to ensure that a patient's care will be delivered more safely with secure health information being shared quickly between clinicians (and clinicians and patients). Clinicians’ work patterns change and are reported to be enhanced by those who embrace those changes. The care of populations—a practice's patients or wider—will be improved. The health service will be more efficient. If this is to be realized, technical and ethical challenges must be overcome. This is not just theoretical. All of us who work in general practice use clinical records and the characteristics of those records determine the way we work.
GP curriculum statement 4.2 emphasizes the importance of records and their governance for knowledge base within the curriculum. Virtually, all of UK general practices are now computerized. More and more information is being stored and accessed electronically. Communication between primary care and other parts of the health service is quickly becoming electronic in nature as a result of initiatives in each of the UK's constituent countries. Electronic media can easily be transmitted over distance and parts of a patient's record can be extracted automatically and used for different purposes. The context of a record, which frames issues of meaning and governance, is no longer local, and skills in record-keeping that have been learned in the paper-based paradigm will not be sufficient. It is important that GPs should be able to demonstrate
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Background |
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TOPAbstractThe GP curriculum and...BackgroundMedical records--what are they...Hosting of records in...Clinicians differ in their...Ethical obligationsInformation governance...ConclusionReferences |
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UK General Practice has long enjoyed a strong use of electronic records within its own setting. Latest figures (Fig. 1) show that 70% of practices solely use their computers for clinical records and another 15% are using the computer for a great deal of their work although using the paper records as well. This success has undoubtedly been driven by contractual incentives, including reimbursement. Starting with repeat prescribing, call and recall and clinical audits most practices have evolved to place their computer records at the heart of everything they do.
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Other European Union countries have differing use of computers in general practice (see Fig. 2). In the UK, British GPs exploit the technology for their internal use but there is very little sharing of data with others outside the practice as compared to Denmark
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Clearly, GP computer records have not yet reached a steady state. Their content will grow, the degree of coding will become more sophisticated and sharing will increase. Alongside this, we must consider a number of key questions:
- What are the new purposes of the clinical record?
- Who is accountable for its content?
- What are our ethical obligations when we share records?
- How can we guard confidentiality and patient's choice while sharing records?
Patients are increasingly accessing their own records. This leads to changes in the recording of our records and also to our consulting. What are the changes we need to think about in preparation for patient's access?
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Medical records—what are they for? |
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TOPAbstractThe GP curriculum and...BackgroundMedical records--what are they...Hosting of records in...Clinicians differ in their...Ethical obligationsInformation governance...ConclusionReferences |
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Historically, we were used to thinking of our records as an aide-memoire—to support us when we saw the patient again and to remind us what we have already done and what we planned to do next. We regarded them as an essential medico legal document in case we required the evidence for defence of our actions. Clinical records have been unique to the organization that created them. As patients moved between organizations that cared for them, only letters and other kinds of communications such as faxes and phone calls enabled the transfer of medical information.
Inevitably, there has been duplication of information in each of the organizations where the patient attends for care. Unfortunately, this has led to discrepancies, such as in the list of medication that each organization believes that the patient takes. These differences have caused errors and patient harm.
If, in time, a patient's clinical record is shared, we all have access to the same information within the records across different parts of the health service. Benefits of this include
- There is no need to send letters to inform each other of the consultations that have taken place
- This would reduce the number of letters that we receive for information, instead we will alert each other at times when action or attention is required
- The medical record will then become a resource which is available for consultation within the wider primary care team as well as secondary care
- The record will prompt decision support as well as enabling access to context sensitive guidelines
- The software will provide audit material effortlessly which is used to improve consistency and standards
Shared records do not have to be the entire record—they can be subsets of information that other organizations need to access rather than the entire record.
This vision is a reality in some parts of the United Kingdom already, but the full realization of the benefits will take another decade.
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Hosting of records in data centres |
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TOPAbstractThe GP curriculum and...BackgroundMedical records--what are they...Hosting of records in...Clinicians differ in their...Ethical obligationsInformation governance...ConclusionReferences |
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Until recently, clinical General Practice records have been held within our surgeries on internal networks. Now clinical records are increasingly held remotely from the surgery in a commercial hosting environment. Our best knowledge is that this is the case for nearly 1000 practices now—1 in 10 of all practices. This proportion will increase year by year. Some clinicians have understandably feared the movement of their records to a remote site, and some of the pros and cons are outlined in Table 1.
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Most informaticians believe that hosting to industry standard is inevitable. As bank customers, we do not expect the information about our accounts to be solely housed in our local branch. Patients expect their records to be given similar security provision. Similarly, they are increasingly expecting online access.
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Clinicians differ in their perceptions of the risks and benefits of record sharing |
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TOPAbstractThe GP curriculum and...BackgroundMedical records--what are they...Hosting of records in...Clinicians differ in their...Ethical obligationsInformation governance...ConclusionReferences |
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General Practitioners enjoy a one-to-one relationship with their patients and their records have traditionally been discreetly held within the practice. General Practitioners record a great deal of information all of which is not appropriate for sharing beyond the setting in which it was recorded. Each hospital has always had shared records within that hospital across disciplines and departments. The clinicians who are used to record sharing in hospitals are often mystified by the views of colleagues in primary care.
Public health clinicians need accurate information that is derived from the records of both primary and secondary care. They are continually frustrated by the variable quality of the data they receive which is used to commission care and manage public health policy. Data quality is improved as records are shared and feedback on content is possible.
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Ethical obligations |
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TOPAbstractThe GP curriculum and...BackgroundMedical records--what are they...Hosting of records in...Clinicians differ in their...Ethical obligationsInformation governance...ConclusionReferences |
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The key issue is patient's consent. The gold standard is expressed consent. This is a consenting procedure that is commonly used for a single time-limited procedure where the options, risks and benefits can be clearly explained by the clinician to a patient who can make an informed decision on the choices presented.
Is the gold standard of expressed consent achievable for the sharing of electronic records? The explicit consent discussion with the patient must cover the potential future utilization of the records and the potential future content. These are not only difficult for a clinician to explain but extremely hard concepts for a patient to comprehend in the abstract.
Some General Practitioners advocate for expressed consenting in the context of our consultations with patients. The RCGP has data to suggest that General Practitioners will see 90% of the patients on their list over a 3-year period. Is it fair on the patients to put these considerable discussions into the context of a consultation that was arranged for a different agenda and is time pressured? Is it possible for these consenting discussions to stay fresh and not formulaic? Inevitably, there is a risk that, over time, the doctor presents the decision in a way that precludes informed consent.
We currently share clinical information with colleagues across the health service with the implicit consent of the patient. Many practices print out additional information to accompany the referral without asking the patient whether they are happy with the content. The patient expects us to send appropriate information with our referral to support safe management. This implicit consent model is the ethical basis on which the "opt out" model for record sharing is predicated. Patients can choose to refuse to have their records shared but, in the absence of such opting out, their consent is assumed.
There is a middle method. In this, the creation of a shared record is subject to an opt out consent model. In this, the records’ sharing is made possible under implicit consent but clinicians who require access need to have express consent to do so from the patient at the time. This is the consent model being adopted for the Summary Care Record and will be the basis on which the access to Summary care Records is rolled out across the country.
There is an important balance that must always be maintained between the rights of society generally to have their health records available to improve their care and the rights of the individual to choose not to take part if they judge their own risks (to confidentiality for example) to be too high.
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Information governance challenges |
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TOPAbstractThe GP curriculum and...BackgroundMedical records--what are they...Hosting of records in...Clinicians differ in their...Ethical obligationsInformation governance...ConclusionReferences |
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There are several challenges for the workforce as we move into a shared electronic record environment. There are some ways in which we can reduce the risks associated with those challenges.
NHS staff are increasingly becoming aware of their responsibilities to ensure that they protect patients’ records appropriately. In the current environment, staff feel vulnerable as computer systems become ever more sophisticated and they fear inadvertent breaches of confidentiality. The additional measure of asking patients first before we access their shared records (consent to view) reassures both patients and staff as they learn to use the technology. The presence of audit trails and alerts helps them to demonstrate when they have used the record and why they did not if a patient refused permission.
The data that is presented in shared records needs to be accurate and meaningful with appropriate context. Often, we record information with accompanying free text that clarifies the meaning. When the records go no further than our own organization, a careless choice of code is insignificant. But there can be major implications as this example illustrates:
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It is evident on the screen that the meaning the author was attempting to convey is that the patient's mother has asthma. When this data is transferred, however, to other environments, it is not the rubric but the underlying code that is transferred and whose integrity must be assured. A clinician treating the patient in another setting would assume that the patient had asthma. It is for that reason that practices are required to pass a data quality accreditation as an organization before they can send summary records to the Summary Care Record held on the National Spine. This standard will help to ensure that data is fit for sharing.
Occasionally, there is information within records that is clearly wrong. Clinicians worry a great deal about potential harm for patients if they unwittingly are responsible for enabling the dissemination of inaccurate information within shared records. For example, sometimes the wrong set of records is used to file key information. Patient's access to their own shared records will enable them to check the accuracy of their records and to contribute to its accuracy and quality.
Patient's access to records is either feared or welcomed by clinicians and it is worth exploring some of those issues.
- There is a potential workload when patients request that errors are amended including an explanation of the entries in the records and their meaning
- General Practitioners take on the burden of uncertainty on behalf of patients as the differential diagnoses are worked through along a plan of investigation and watching an illness progress
- Patient's access opens up this process and has the potential to expose the patients to information that may frighten and worry them
General Practitioners who do open up their records to their patients describe positive changes in the doctor–patient relationship. This enables a move to patient empowerment and a true partnership developing between the clinician and the patient in the management of care. Patients who access information from their records in advance of the consultation report being better informed, using the time they have with the clinician more profitably.
HealthSpace is being developed to enable patients to have online access to their Summary Medical Records and other medical records where online access is possible. Some GP systems enable access for patients to their own records.
The data protection act requires clinicians to check that a patient is not harmed by information that they view in their own records. There are questions over the practicality of this requirement when patients have regular ongoing access to their records. Currently, the Royal College of General Practitioners have been commissioned to provide professional guidance to colleagues over some of the fundamental challenges of a shared care record environment. This work will help us to understand who should have editorial control and how errors should be addressed when there are multiple authors.
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Conclusion |
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TOPAbstractThe GP curriculum and...BackgroundMedical records--what are they...Hosting of records in...Clinicians differ in their...Ethical obligationsInformation governance...ConclusionReferences |
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General Practitioners are used to the gatekeeper role they provide for access to secondary care; are we ready as a profession for being the guardian of the patients’ shared electronic records? In this article, I have described some of the issues that we need to absorb and as a result change our relationship with shared electronic records their function and our relationship with them. The standards and concepts are being incorporated into our undergraduate and postgraduate curricula.
Key points
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TOPAbstractThe GP curriculum and...BackgroundMedical records--what are they...Hosting of records in...Clinicians differ in their...Ethical obligationsInformation governance...ConclusionReferences |
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