The value of sharing test results

Clinical care is proven to be safer, more transparent, and more 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 accordance with the basic tenets of patient-centred care, leads 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

• Outpatient appointments can be avoided, creating more capacity for staff

• Patients are less anxious and more prepared for face-to-face appointments

• Appointment time is more productivewhen , discussing future goals (rather than just the results)

• Telephone enquiries are reduced

• Face-to-face interactions can be replaced by PKB synchronised messaging, creating capacity

• Patients develop a better understanding of their healthEmpowered , empowered to self-manage their care

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

North West London

Sharing test results for over 7 years, with over 42million results shared via PKB with their patients to date

Watch the video below of Dr Sanjay Gautama from Imperial College Healthcare NHS Trust and our PKB Chairman, Dr Richard Smith as 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 patients tell us

The following reviews have been taken from the PKB Trustpilot site, showing the difference in feedback from a patient with and without access to their test results.

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.

Case studies

Swansea Bay University Health Board

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Swansea Bay University Health Board is the first organisation in Wales to go live with a national integration to share test results with patients in the Urology Service. This clinical team manages patients with prostate cancer and are enabling patients to access their PSA blood test results faster with PKB. Patients are being informed and educated on the purpose of PSA monitoring and encouraged to recognise a pattern in their individual results. Before PKB, patients would typically wait several weeks to learn about their PSA result and its significance. Now, they are alerted to new blood results after 7 days and given support to understand and manage this information.

The Kings Fund Report:Technology and innovation for long-term health conditions

"As well as enabling more effective relationships, some of these innovations are also designed to shift the balance of power between patients and the professional staff delivering health services. In the UK, any organisation that adopts Patients Know Best gives patients full and immediate access to all information contained in the portal on their health and care. Patients can access test results as soon as they arrive and see everything that has been written about their care. This means that they are in a much better position to alert staff and help correct errors and have detailed discussions with staff about their care. As for relationships above, there is scope to design in features of digital services that support this rebalancing of relationships between service users and professionals, for example, simply ensuring that people have access to their full medical record or ensuring that patients should always be able to decide who accesses their data and how it can be used. "

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

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:

Radiology reports

75% of patients reported that the ability to view their radiology reports is extremely useful with 25% suggesting this is very useful.

Blood test results

71% reported that the ability to check their blood test results is extremely useful. 21% stated this was very useful. 4% said this was moderately useful. A further 4% suggested this is slightly useful.

Did you understand the information that you saw on CIE?

In the same survey, patients were asked if they understand the information they saw in PKB. 45% said they definitely understand the information. 55% of patients understand the information they saw to some extent. 0% of patients responded that they could not understand the information, or were not sure.

What health and care professionals say

Storing test results in a patient's record

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PKB stores data about the patient, for the patient. Data in the PKB record goes wherever the patient wants it to, whenever they need it to.

As a social enterprise with a mission to empower patients, we welcome the trend in recent years of more organisations allowing more patients to see more data from more systems. As part of this, PKB has tightly integrated with the UK's NHS App, and the Netherland's PGO infrastructure.

PKB goes further than the NHS App and hospital portals because it gives the data to the patient:

1. Data from all sources: PKB receives 20 million test results every month from all care settings including GPs, hospitals and mental health providers, the patient, their carers, and devices. By contrast the NHS App shows data from GP systems in England, the NHS Wales app shows data from Wales, and MedMij's PGO infrastructure only shows data from Dutch providers.

2. Carers can access a patient's PKB record: a patient can grant individual free access to the record, each with their own logins, and with separate granular permissions.

3. Shared care records can access a patient's PKB record: all data in the PKB record are available to other record systems. Clinicians can see the data in the PKB record by logging directly into the PKB web site; or clicking from their clinical systems using single sign-on; or directly in their clinical systems through API calls. PKB handles the correct consent - implied, explicit and break-the-glass for emergencies - to deliver the data correctly, logging all access for an audit trail.

4. Third-party apps can access a patient's PKB record: app developers using PKB's APIs to access a patient's data. PKB checks consent - from the patient or professional - for the app to access the data and logs all access in an audit trail.

5. PKB activates patient and carers about new data: every time new data arrives in a patient's record, PKB notifies the patient and carers about the new data. 75% of patients log into PKB within 2 days of these notifications, and 50% within 2 hours.

Top 3 common questions

At Patients Know Best, we are confident that giving patients their test results is one of the most helpful things you can do for them. However, here are some common questions asked by clinicians at the beginning as they focus on the safety of their patients:

#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.

Find out more

To learn more about the features and benefits of Patients Know Best, or to learn more about the value of sharing health information such as test results with patients and health professionals, visitwww.patientsknowbest.com. You can also email us, enquiries@patientsknowbest.com.