Patient access to diagnostic test results: the RACGP's view
The Royal Australian College of General Practitioners (RACGP) has long been an advocate for the personally controlled electronic health record (PCEHR), recognising the significant benefits a national electronic health record could bring to patient healthcare outcomes, and in improving safety and quality.
The imminent implementation of diagnostic imaging, pathology and other diagnostic results into the PCEHR will provide healthcare consumers and other healthcare providers with access to their information and may afford significant benefits if delivered judiciously.
This implementation needs to be based on a model that leverages current clinical workflows, has been assessed to be clinically viable and safe, meet national privacy requirements and consumer expectations, and provide standardised and consistent views across all services.
Any process for uploading reports into the PCEHR needs to ensure that there are not any potentially new, foreseeable risks or unintended consequences for healthcare consumers or clinicians. The RACGP stands firm on its position that the referring doctor retains the primary responsibility to review results and action any further healthcare needs in collaboration with the patient.
The RACGP acknowledges and appreciates that the PCEHR record is owned by the individual and patients have an absolute right to access and manage their personal health information. However, there is a need to balance this against the significant priorities of patient privacy and clinical safety.
Under the proposed direct upload model in conjunction with the existing default PCEHR consumer standing consent model and settings, there is a risk that any person in any organisation that has access to the PCEHR could potentially access patient's test reports.
Given the manner in which most Australians have been registered via assisted registration, it is highly likely that few would be aware that the default setting is to “allow any provider involved in my healthcare (whether it be a dentist, GP, physiotherapist, etc.) to access my PCEHR”. This setting alone presents two major concerns:
- A privacy concern in that privacy breaches will inevitably occur which have the potential to be exacerbated by the uploading of volumes of diagnostic reports
- A clinical safety concern in that in some circumstances non-contextual advice may be given by a provider not directly involved in the patient’s ongoing care.
The first significant privacy breach or unintended data exposure or clinical adverse event has the potential to result in major embarrassment and a significant loss of confidence in the system.
There is a risk that patients may misinterpret test reports with the potential to result in a failure to seek follow-up care or advice. This could be partly attributed to the fact that current report terminology is aimed at healthcare providers and may not always be easy to interpret even for a trained clinician.
Results viewed in the absence of a broader clinical context or experience have the potential to create adverse impacts. Healthcare, like any other industry, has its own brand of jargon and nuances that require experience to interpret and establish the ensuing course of action.
A recent topic review describes several situations where patients with glioblastomas who were only provided online access to their MRI scan or report or had only partial results in their health record, misinterpreted the information prior to expert clinical interpretation and medical review resulting in unnecessary patient distress and prolonged uncertainty. 
Test results represent just one of the many factors that are considered to reach a clinical diagnosis and to plan any ongoing treatment or management. Age and gender, current and past medical conditions, family and social history, medicines, occupation, ethnicity, genetics, diet and lifestyle all contribute to the overall interpretation of results, which require a broad set of clinical skills that GPs have been trained to provide.
The patient’s treating practitioner is therefore usually the most appropriate and qualified person to explain and discuss diagnostic results.
It is the ongoing GP-patient relationship that facilitates the provision of contextual and ensuing advice, assisting patients to comprehend their individual test results and be well supported through any future necessary healthcare needs. This is a core component of continuity of care, and a concept the RACGP advocates strongly for.
As an alternative approach towards greater information transparency some organisations provide access for patients to directly view their doctor’s notes after the consultation event. The Open Notes study involved 20,000 healthcare consumers across three sites in the United States and over 100 primary healthcare providers. 
The participating healthcare providers discussed the notes with their patients as part of the consultation, providing the contextual knowledge required for the consumers to understand the delivered information. Patients were subsequently provided online access to their notes in the healthcare provider’s local clinical information system.
The broader benefits of the study were clear and included increased trust for both healthcare consumers and clinicians. Patients could confirm that their provider truly understood their goals and priorities and healthcare providers could have confidence healthcare consumers used information appropriately, recognising that knowledgeable healthcare consumers often achieve better health outcomes.
The collaborative approach taken in the Open Notes study clearly demonstrates the value of patients being better informed and provided with context when dealing with medical information. Good communication is a fundamental component of effective healthcare and great value is placed on the transparency and availability of information.
Ensuring patients have the appropriate level of health literacy is also vitally important. This can be achieved through relevant healthcare patient education. Patients must be appropriately informed about their medical care including understanding what their test results reveal as part of a holistic approach, rather than simply as a set of numbers available online.
Education requirements for healthcare consumers should include:
- What precisely can this test reveal?
- What are its limitations?
- How long should results take, and why?
As a pathologist colleague indicated to me recently, government and consumers should be more focused on developing processes to strengthen systems to ensure that all requesters (especially those within the tertiary sector) are reviewing the results of tests ordered and following up accordingly.
There has been little to no focus on this requirement at a national eHealth level, which one might consider to be a core requirement and duty of care (call it the primary use case).
Direct uploading of volumes of human un-curated diagnostic reports to the PCEHR will not in itself solve the issue of tests that are not followed up and will create a new medico-legal concern in that providers will have no immediate visibility regarding which test reports have been reviewed and followed up.
Put simply: big data, big workflow, big risks.
Dr Nathan Pinskier is chair of the RACGP’s National Standing Committee – Health Information Systems.
- Cahill JE, Gilbert MR, Armstrong TS. Personal health records as portal to the electronic medical record. Journal of neuro-oncology. 2014;117(1):1-6.
- Delbanco T, Walker J, Bell SK, Darer JD, Elmore JG, Farag N, et al. Inviting patients to read their doctors' notes: a quasi-experimental study and a look ahead. Annals of internal medicine. 2012;157(7):461-70.
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