Patient record access - closer than you think

The fantasy of online records is becoming a reality. Dr Brian Fisher tells us about two methods that are enabling patients to see their full electronic primary care records

A benign fantasy

The large health centre was quiet. It was midmorning, but the atmosphere was calm. The clinicians had time to see their patients. The telephones weren’t clamouring and receptionists could attend to patients diligently.

The reason for the calm efficiency was that much of the work had been done by offering patients the ability to access their records online and in the surgery. Test results were seen and understood.Records were accurate because patients had corrected them. Many questions that patients had about their care had been answered by looking at the letters about them. Because their records gave them access to reliable and high quality health advice and information directly tailored to their needs, it was easier for patients to manage their own diseases.

Fantasy becomes reality

It is now possible to do all of these things. EMIS, the largest primary care software provider in the UK, has joined with PAERS, a small company run by doctors to enable patients to see their full electronic primary care record. This includes all consultations, letters, test results and allergies.

 This is possible in two main ways: through a kiosk in the waiting room and, currently in pilot form, on-line.

The kiosk has a touch screen accessed via a fingerprint. The patient sees all the data held on their GP record, but it looks very different, being reformatted for ease of reading and navigation. Read codes are linked with health information, so that advice is linked to the patient’s problems directly. This is currently only available in EMIS practices, but InPractice Systems will have them available in the future. Practices can start access from a date they choose and can show selected sections of the record.

In the current online pilot, patients access their record through a pin+password system followed by a passphrase, akin to online banking. A token may also be offered for sounder authentication. Online access is likely to become widely available in early 2007.

 This is an example of one screen seen in the online approach. The list on the left enables patients to see the same data presented in different ways. The raw data such as Read or Snomed codes will increasingly be linked to both simple and complex background information - this will include simple Patient Information Leaflets, links to sites such as www.besttreatments.co.uk and patient-centred NICE guidance.

It can also link with QOF data, so that patients can be reminded of key health interventions, such as their diabetic check or Blood Pressure review.Patients and record access.

We know that patients are keen on access, both in principle and practice. Time and again, patients say in the studies that, even if the news is bad, they are keen to see what is being written about them. About 10% of patients find some of what they see distressing, but they still feel it is right and safe for them to see their record. Studies that we have conducted in the practice chime with other international studies to show that patients gain significantly from record access:

• They trust the clinician and the practice more
• They feel more able to self-manage their illnesses
• They feel more confident in the clinical encounter
• They can correct the record and thus improve safety
• There is some evidence that record access improves health outcomes, improving medication compliance in heart failure and improving smoking quit rates

As we pilot the online access, we begin to see other benefits. Since patients have access through any web-browser, they can access their records in outpatients or in A+E, enabling hospital clinicians to see what the GP has already done. We know of a patient who got ill abroad, pulled up their records online and enabled far safer care.

Recent work funded by NHS Connecting for Health, as yet unpublished, has investigated how patients use record access via the kiosk. Patients use access to make the best use of time in a consultation. They avoid appointments if they have seen the information they want electronically. They use the data to complete forms. They feel quite tentative, because they don’t see the information as theirs - it feels as though they are peeking over the garden fence into someone else’s territory. If a consultation has been confusing, they look at their notes to clarify what was said.

In summary, record access is safe even in serious illness. It is supported, of course, by the law on Data Protection and the Copying Letters to Patients initiative.

 

Clinicians and record access

Clinicians are less keen than their patients on record access. 38% see record access as essential to good care, while 75% of patients are positive in reply to a similar question. (survey by Developing Patient Partnerships 2006 http://www.dpp.org.uk/ )

Clinicians are concerned that patients will see our mistakes and muddles. They are concerned that undiplomatic remarks may come to light. They are worried that patients may see third party information. In summary, they are concerned about litigation. There is no evidence that record access increases litigation. On the contrary, it improves relationships and increases trust.

It is also possible to make the system feel safer for practices by enabling access to start from a certain date after which practices can ensure simple administrative safeguards to prevent any inappropriate disclosure.

Links with Connecting for Health - the Record Access Collaborative

In the system described above, the patient controls access. In the Spine being developed by Connecting for Health, an edited summary record will be placed on the Spine which will be accessible by both patients, through HealthSpace, and clinicians. This will exclude problem titles and medication related to sexual and mental health and some infections. In addition, the intention is for GPs, over the next few years, to have conversations with each patient about what data they would like excluded from the Spine.

EMIS/PAERS is in close touch with Connecting for Health and we are trying to ensure that systems and processes interlock for patient benefit. We see HealthSpace offering basic patient access and EMIS/PAERS enhanced access. The two systems will complement each other.

 EMIS has initiated a Record Access Collaborative, putting people interested in the field in touch with each other. We feel that both patients and clinicians should have access to as complete a set of notes as possible, both in principle (because we believe it the patient’s record and the patient’s data) and because it is safer for clinicians.

In conclusion

We see targeted patient-centred health information as offering increased safety and improved patient self-management. We see record access as opening a new chapter in health, significantly increasing collaboration between clinician and patient, and driving better care.

For more information on the Record Access Collaborative contact: Dr Brian Fisher: brian.fisher403@ntlworld.com

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