PCEHR and the 'opt-in' model – are we swimming against the tide?

The national Personally Controlled Electronic Health Record (PCEHR) project requires health consumers to register and 'opt-in' to the PCEHR system. This appears to be contrary to current practices and may be going against the prevailing trends in both Australia and overseas.

***

The youth lay on the floor, blood all over him, half‑twisted onto his side. One arm was drawn over his face, his body motionless. Blood had pooled beside him, and was splashed across the wash-basins, the walls and floor. This was the scene which confronted me in the toilets of a major public building. A man bent down over the prone figure, which appeared unconscious and perhaps only a teenager, and began to turn him onto his back.

"Don't move him," I said, "I'll call an ambulance."

"I am a doctor," said the man crouching down."

Two airport employees appeared to assist the doctor, and said an ambulance was on its way. As I stepped away to give them room, I could see that the injured boy had deep slashes in both wrists.

***

In the tragic case described above, immediate online access to the patient's medical information — perhaps in the near future on a smartphone or similar device — could mean the difference between life and death. The Personally Controlled Electronic Health Record (PCEHR) could help — or could it?

The opt-in model

The currently proposed opt-in model for the PCEHR requires each consumer to register and give consent for their PCEHR to be established. Where a consumer has not opted-in, no patient information will be available in a PCEHR. Even for those consumers who do opt‑in, they will be allowed to restrict access to certain information of their choice, and to restrict access to nominated clinicians. The result of this approach will be that many patients will continue to be treated by clinicians who are not fully informed of the patient's medical history. The suppression of patient information will inevitably disadvantage those who have not opted‑in and contribute to sub-optimal outcomes, even the risk of avoidable deaths.

In an emergency, a trauma situation like the one illustrated at the start of this article, if the patient has not registered, complex authorisation and access controls stand in the way of the patient's medical information, even though their life is on the line. The PCEHR's Concept of Operations provides for emergency access, but the necessary authorisation procedures and access control threaten to be functionally difficult, bureaucratic and time-wasting. Concerns about the design and increased complexity of emergency access remain current and unresolved, so much so that the PCEHR's emergency access model is stated as requiring further consultation.

Information on the patient's medical history, such as blood type, allergies and medication history should be available for instant access by clinicians. In such situations, the principle ‘first do no harm', has to be paramount. Withholding a patient's medical record information from clinicians, not only in emergency and trauma cases but in any provision of care, would surely transgress this principle.

The overseas experience

Evidence is accumulating from overseas experiences of the benefits that can accrue from Shared Electronic Health Records. But they appear to be predominantly based upon opt-out approaches. An EHR is generated and made available to clinicians, while the onus is put on the individual to opt-out if they so choose.

In the NHS in England, by March 2011 nearly six million Summary Care Records had been created. Around 30 million people had been sent a letter with an opt‑out form to complete and return in a pre-paid envelope if they wished to make that choice. By the end of March 2011, only 1.16% had chosen to opt-out.[1]

Elsewhere in Canada and Denmark, a similar choice has been given to the consumer, in effect to opt-out in a variety of ways. The predominant theme is to create the EHR as a record of a patient's medical information for use by clinicians, and then leave it to the discretion of the consumer to access it if they wish, or opt‑out.

Singapore's recently developed EHR functions as a national summary record of each patient's medical information for use by clinicians. It is not personally controlled, and once a patient visits a hospital or doctor for a consultation, the principle of implied consent enables access to the EHR by clinicians. Access by the consumer is not yet planned.

The opt-out approach to the PCEHR

In Australia the alternative to the opt-in model should be given serious reconsideration. Under an opt‑out approach, this would automatically make available in a PCEHR all appropriate patient information that is held by healthcare providers in their Electronic Medical Record (EMR) systems, unless a consumer specifically requests to opt‑out of the PCEHR system. The extensive implementations of EMR systems by NSW Health and other states and jurisdictions have taken place based upon an implicit opt-out model. That is, a patient's consent is implied when they attend a healthcare facility for treatment.

Whether in hospitals, out-patient clinics, or GP practices (through electronic discharge summaries from hospitals), and across geographical areas, patient medical information stored in EMRs is accessed by clinicians on the basis of providing care, and without seeking the patient's prior consent. Within GP practices and other healthcare organisations, patient medical information is accessed via EMR systems purely in accordance to clinical need, unless a patient initiates a request to prevent such access.

The opt-in model is not even favoured by the Health Consumers Council, who have stated publicly their preference for an opt-out approach. Over a number of years in Australia and overseas, surveys of the public have shown that health consumers expect clinicians to be sharing their medical information as a matter of course, to provide the best health outcome. Typically, a common reaction by health consumers is that they assume that healthcare providers are already sharing patient information between appropriate treating clinicians to provide the best care for the patient.

Some realities and conclusions

Placing the onus on the consumer to opt‑in and register for a PCEHR disadvantages and puts at risk those consumers who would most benefit from a PCEHR.

Under an opt-in model, any number of consumers will not register for a variety of reasons such as: a lack of understanding; cultural and language barriers; mental incapacity; physical disability; too young an age to exercise the right; remote access; negative advice; and many others reasons including apathy and inertia.

Those who are sick will not want to be confronted by a doctor saying: "We do not have access to your health record. When did you last see a doctor? Are you taking medication?"

A few years ago I took my 93 years old father to an Emergency Department in the early hours of the morning, where he was asked what medication he had been prescribed in the past. His medication history would have read like a fair sized formulary, so not surprisingly the doctor's question was met with a blank stare.

Clearly the lives of patients who have not opted-in, even in cases not at first deemed to be an emergency, will sometimes be put at risk by the exclusion of the PCEHR's medical information. In emergency care a patient's medical information being accessible online is critical, and in a trauma case such information in the first hour has been described as pure gold. A lack of a PCEHR, even in routine treatments and procedures, in a percentage of cases will lead to avoidable incidents.

Patient information within a PCEHR should be available automatically for every health consumer by approved treating clinicians, just as it is within existing EMR systems. If not, the PCEHR will lack credibility and adoption by both patients and clinicians and be in danger of becoming a white elephant. And of course the opportunity for a consumer to opt-out, should be subject to a rigorous application process, overseen and assessed against specified criteria by an independent quasi‑judicial body. To opt-out should not be an easy option.

Once the PCEHR is available, we should adopt an opt-out model, and ensure we 'first do no harm'. The PCEHR has the potential to provide patient medical information any time, anywhere, for any health consumer, and assist the treating clinician(s) at the point of care, wherever that may be.

References

  1. http://www.dh.gov.uk/en/MediaCentre/Pressreleases/DH_125690

Posted in Australian eHealth

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