Sharing Test Results

The value of sharing test results with patients

Clinical care is proven to be safer, more transparent and efficient when patients and healthcare professionals have access to a complete health record, including any new test results in real-time.

Access to test results in line with basic tenets of patient-centred care, lead to better patient engagement and greater involvement in medical decision-making. It also means:

• Clinical decisions are always based on accurate information.

• The latest information is immediately available to all healthcare professionals, no matter where the patient is treated.

• Some outpatient appointments can be avoided altogether, creating more capacity for staff.

• Patients are less anxious and more prepared ahead of face-to-face appointments.

• Appointment time is spent more productively discussing future goals or plans (rather than just the outcome of any results).

• Telephone enquiries are reduced.

• A number of face-to-face interactions can be replaced by secure messaging, creating even more capacity.

• Patients develop a better understanding of their health and are empowered to self-manage their care.

• All patients but particularly those with long-term conditions such as diabetes are more informed and can, therefore take adequate steps to manage or remedy their health immediately.

North West London has been sharing test results for over 6 years with over 42million results shared via PKB with their patients to date

Watch a recent conversation between Dr Sanjay Gautama from Imperial College Healthcare NHS Trust and our PKB Chairman, Dr Richard Smith where they discuss how people react to the changes in the way healthcare data is shared and the importance of doing so.

Dr Sanjay Gautama has been a Consultant Anaesthetist for 20 years at the Trust alongside his role as Chief Clinical Information Officer, Cauldicott Guardian and CCIO/IG Chair for North West London. He also holds London-regional roles as Clinical Information Lead and Chair of the London IG Steering Group.

What the evidence says

Evidence collected from the NHS organisations using PKB shows that access to test results improves care co-ordination, reduces anxiety for patients and means time spent during appointments is used more effectively.

11 Acute/ Mental Health Trusts are currently sharing test results with their patients using PKB. No organisations have subsequently turned off their test result feeds. Instead, they have all continued to connect more feeds and increase the amount of data shared with patients over time.

Increased patient engagement

A review of patients with, and without access to their test results shows that patients with access are more engaged:

The Care Information Exchange (powered by Patients Know Best)

In a survey conducted by Imperial College Healthcare NHS Trust in 2019, 500 PKB users of the Care Information Exchange were asked how useful they find the following features:

#1: How can patients understand results?

Most patients, especially those with long-term conditions such as diabetes, are already familiar with reading and interpreting their test results. The PKB user interface makes this simple with a number of automated features for the safe display of laboratory data.

Every data point includes the reference range from the laboratory on the given date, allowing explanation across labs and date ranges. The test is also explained in plain English (or in any of the 23 language translations PKB offers) so the patient or their carer knows exactly what ‘haemoglobin’ means for example. Furthermore, test results are explained in a more meaningful way by including a link to an explanation from the Royal College of Pathologists which is written in plain English and designed for a lay person to better understand what their low or high result means.

#2: Will my workload increase with questions or requests for support from patients?

When patients have access to their test results, they can better understand their condition and most of the time, use this knowledge to manage their own care without the need for any further clinical intervention. Where test results are available to patients prior to their routine follow up appointment, we have found patients often prepare their questions in advance of this face-to-face time rather than contact professionals to discuss them before this. This means time spent during appointments is better spent discussing the things that are most important to patients i.e. future care planning and goals.

#3: Shouldn’t patients get test results after a doctor authorises release?

Authorisation adds clinical work and reduces clinical safety. PKB’s automated delays for sensitive results handle the small set of results that need a consultation. In early experiments, physician authorisation became time consuming when giving patients access to test results. It also risked patients not getting the results as other demands on time prevented clinicians from authorising release.

We have found that patient safety improves with immediate access to results. Often, patients that register to access their data are experienced in their own health and motivated to learn more. With immediate access to test results they can manage their medications, escalate to clinical teams, and share information in emergency departments.

For a narrow set of test results, PKB provides automated delays. For example, pathology biopsy reports can be delayed by two weeks to give clinicians time to counsel the patient about a possible cancer diagnosis. However, if no one has been able to speak to the patient about their possible cancer diagnosis within two weeks, then it becomes more dangerous for the patient to remain ignorant than it is for the patient to learn of the diagnosis without being counselled.