Below are the responses to some of the questions we are commonly asked in relation to Pathology data in PKB.
How does the display of data in PKB fit with ISO 15189 accreditation?
PKB is used to show results from lots of ISO 15189-accredited labs. The process of integration begins with the IT team. Towards the end, we recommend sending screenshots to the laboratory team for feedback and based on feedback from the lab the IT team may update the data they transfer. Another round of screenshots is sent for approval until the laboratory team approve for switching on integration in the live site.
What about patients seeing reference ranges out of bounds?
Experience has shown that patients seeing their results being out of bounds has not been a cause for concern, nor have patients taken up clinicians' time discussing their worries. We know this from the roll-out of PKB across lots of specialities, institutions and countries with patients with a variety of backgrounds, literacy and engagement levels.
What if a patient sees results out of bounds before the ordering doctor?
This happens routinely and is a good thing. Patients with a chronic diseases are experienced in what to do with the data and frustrated with having to wait for a clinic appointment before knowing the result. Patients with a new or uncertain diagnosis are used to waiting to discuss details with the doctor.
What if a patient sees results with "? cancer" before seeing a doctor?
The only exception is test results with a text component which some teams delay displaying by up to 2 weeks. The delay is to protect the patient from seeing a negative result (e.g. "possible cancer") before discussing it with their doctor. But if it has been two weeks without the doctor discussing the result with the patient then it is more dangerous to hide the test from the patient and it is useful and right that the patient should see the result.
What about comments?
The full text of notes appears in the table below the chart. An icon next to each value with a note indicates that the note should be read in the table.
Can test results only be released on authorisation?
No, nor is that approach a good use of clinicians' time or a safe protocol for patients' health care. Automated release removes the burden of approvals from clinicians. Real-time access does not increase the burden of work for clinicians, instead reducing it as clinic appointments can be cancelled and patients with chronic conditions stop calling to enquire about their results. Some teams delay displaying by up to 2 weeks for results with text to protect the patient from seeing a negative result (e.g. "possible cancer") before discussing it with their doctor. However, if it has been two weeks and no clinician has discussed possible cancer with the patient further delays are dangerous to the patient.
What about patient-specific delays?
There should not be patient-specific delays. Some patients during some periods (e.g. childhood or a mental crisis) may not have the mental capacity to cope with test results. In such cases, their access to PKB can be suspended. This is a clinical judgement made by front-line clinicians and is not for the laboratory team.
Can the delay policy be changed subsequently?
The delay policy is set by the clinical team. They can change it according to their own processes.
What about the risks of starting with mental health patients?
Some mental health teams use PKB by starting with care plans and secure messaging and only later on switch on the transfer of laboratory data. This is a clinical judgement made by front-line clinicians.
How are amendments handled?
The chart and table in PKB show the latest version, i.e. with the amendment. The table shows that the result is an amendment and the back-end stores all versions for medico-legal audit trails. The patient and carer are notified that an amendment has arrived in their record.
Would blood transfusion or genetics open up questions over paternity?
They may do. But in discussions with clinical teams include the Perinatal Institute the safety of the release of accurate data overrides the possibility of questions over paternity.
Would the content be translated?
No, test results data are shown as they arrive in the language that was transferred to PKB.
Are there notifications about amendments?
Yes, as well as additions and deletions, all notifications by email to patients and carers
Can genetic information be hidden from the carer?
The medical record can be categorised into four different privacy labels: general, sexual, mental and social care data. Each data point can have a different label and each party can be given access to different sets of labels. Typically carers do not have access to sexual health data and genetic information can be assigned to the sexual health privacy label.
Would FBC / U&E from GP go to a patient with leukaemia
Yes and that is a good thing. It helps the patient track their own health but even for patients who do not do so it helps the professionals looking after the patient to safely do so. By putting the test results in a record with the patient the test results go with the patient to the emergency room along with all other information professionals need to see.
What does the pathology lab do if patient contacts it to ask about a result?
They should ask the patient to discuss the results with their clinical team. PKB's user interface has the same instruction for patients.