Expert Views

Patient Power Crucial To EHR Success

Marc Lange represents the European Health Telematics Association (EHTEL) whose Patient and Citizens Task Force recently published a paper on Electronic Health Records (EHR). Here he explains the thinking behind the paper.

Accurate record keeping and the controlled dissemination of such information are crucial to the provision of effective healthcare, our task force concluded, adding:  “the development of electronic patient records for treatment of current conditions supported by a birth-to-death electronic health record provides a potent tool for effective treatment of patients”.

It ‘s a generally held view that the benefits from EHR include timeliness of information, increased accuracy, fuller histories for new professional staff treating the patients and the potential to support cross-border flows.

Also, for eHealth to succeed, acceptance by patients - both short and long term - is vitally important - which is why the task force works hard to interact with national stakeholders across the EU.

Privacy is paramount

But, states the task force, privacy is the cornerstone. The potential for information to flow into areas that the patient may not be aware of and may not approve of is always present. And researchers and commercial organisations will always want to have access to such information.

This point is one heard time and again – that  “the patient has the right to expect that his or her privacy is respected and protected and that the EHR is handled with due regard to professional duties of confidentiality”.

“Controls for the reinforcement of privacy should not be weakened for the purposes of reducing costs,” the task force believes.

That last point is a big issue in relation to EHR, as is control over the information. EHTEL’s task force is unequivocal: “Patients should be considered to be masters of the EHR and should give their consent to the sharing of their personal information.

“This process should also contain a facility for patients to be informed about the uses to which their information is to be put [and] they should retain the right to intervene if they are concerned about abuses of privilege by others when sharing information.”

The task force also argues that patients should have “the right to opt out from having information shared” but adds, crucially, that “such an opt-out should not be used as a method for denying individuals the right to treatment or care”.

Checks and balances

Furthermore, EHTEL’s task force suggests other safeguards to protect the patient’s confidentiality. These include the following:

• EHRs should only be accessible by healthcare professionals who are under a duty of confidentiality, while managers and administrative staff should only have access to personal medical information on an exceptional basis and only after they have signed an appropriate confidentiality agreement;

• The systems that process and transmit the EHR should be formally tested and accredited to ensure their integrity;

• Patients (or their legal representatives in certain cases) should have unfettered access to their records. They should also be able to see an associated security policy that clearly describes how the confidentiality, integrity and availability of records will be preserved;

The above are just a few of the many requirements that need to be addressed in the field of EHR. And the task force firmly believes that national healthcare authorities across the European Union should work to formalise and harmonise guidelines relating to EHR’s use and processing.

The full report is available at www.ehtel.org, section “Task & Resources” sub-section “Task Force, Patient & Citizens”