The switch to electronic health records -- either as a local solution or as part of a larger national initiative -- is gathering pace across Europe, and the issues of ownership, access, control, and confidentiality are becoming increasingly pertinent. One particular hot topic is the value to patients of access to diagnostic images within health records.
"Easily understood and digested statistical data about an individual's diabetes or thyroid dysfunction could help inform and influence patient behavior, which could pass on a real time and cost benefit to the hard-pressed National Health Service (NHS). But could the same be said of diagnostic imaging and how useful would standalone medical images be to the patient concerned?" asked Justin Keen, PhD, a professor of health politics at Leeds Institute of Health Sciences, during the recent Digital Healthcare Conference at Warwick University, U.K.
He outlined the complexity of the issue of health record ownership, and pointed to a lack of clarity in U.K. public policy. He supported the principle of patient-owned health records, but paradoxically he raised the question of whether such a principle is of any practical use to patients when it comes to diagnostic imaging. However, Keen conceded that patients may want to plan their own care packages and analyze their own data as informed stakeholders.
"Diagnostic imaging might facilitate this in perhaps a more accessible and creative way than numerical data or medical narratives alone," he noted.
The competing agendas of U.K. patients and clinicians need to be better understood, according to Keen. These straddle the ethical issues of consent and access, and the medical and administrative issues of improved patient management and accurate diagnoses.
"The NHS wants to use digital health records as a tool to enhance effective collaboration between medical practitioners and to improve risk management. Patient agendas tend to be more focused on the entitlement to access records freely, and to privileging the 'wishes and feelings' of patients in the hope of a more equitable relationship with clinicians," he said.
Unlike France, where patients own their records, records in the U.K.'s public system are owned by the NHS, although patients are entitled to demand copies. In addition, any existing public policy has often lagged behind technological advances when it comes to modern data capture and information handling.
In Austria and Germany, recent survey results indicate a generally positive public attitude toward the national electronic health record (EHR), but research shows that data protection is an issue for many citizens, and that despite strong media discussion, there are information deficits with regard to the national EHR initiatives.
France has fared better with regard to public acceptance of a centralized system. The country's national pilot allows no clinician full access to entire medical histories -- only the section relevant to the particular specialty in question. This may tick one box in the U.K., where citizens are traditionally interested in notions of privacy and the right to a private life.
Meanwhile, EHR vendors are querying what other IT standards beyond HL7 and DICOM will be necessary to support large multimedia files, including those used to process, expedite, and store diagnostic images, and the role of cloud computing as patients demand unfettered access to their medical files.
Whatever systems of access and ownership are finally decided upon, they will have to consider the multiple interests of all parties, according to Keen. The "meaning" and "value" of patient ownership of diagnostic and other medical imaging within healthcare records remain central to what may prove to be a long debate. The principle of patient autonomy in health record ownership, however, remains more than valid in the context of patient benefit, he commented.
