Your experiences of ‘Patients Know Best’

Patients Know Best is designed to create a single secure Personal Health Record where health/social care providers bring together patient information in one place. Patients can then access correspondence, test results and other features.

We heard from 159 people from across Sussex

• A majority (51.5%) felt Patients Know Best made experiences of managing their health and care easier/better, but 10% felt it made it harder/worse.
• Test results were the feature most identified as Very useful/Useful (77%), followed by Clinical Documents (63%) and Appt management (51.5%).
• The least useful features were: messaging with health professionals, resources (advice and information), and appointment management.

Results from Brighton and Hove 

• 82 people from Brighton and Hove completed our short poll.
• Nearly 61% of respondents had used ‘Patient Knows Best’ for more than 12 months.
• Accessing test results was the feature most identified as ‘very useful/useful’ (nearly 73%), followed by sharing clinical documents (63%).
• The least used parts of the tool were messaging with health professionals, accessing resources (advice and information), and using the service to track health.
• Just over half of people (55%) felt the tool had made their experiences of managing their health and care easier/better, and just 7.5% felt it made it worse.

Respondents to our poll told us they would like to see:

Improved awareness amongst health professionals of Patients Knows Best and other digital NHS platforms to support consistency of use and messaging to users.

“Get all health and care professions to use it. Then it might work as we all wish.”

Increased connectivity between Patients Know Best and other datasets, such as GP medical records, to reduce the need for multiple NHS apps and platforms.

“Consistency of records – entry from all involved in patient care pathway, diagnostics, diagnosis, treatments, correspondence etc.”

A clearer and simpler digital ‘offer’ from NHS services, which supports quick and easy access, but reduce overlap and duplication between different platforms.

“There are too many apps, patients know best, GP surgery app, local hospital app and the NHS app. Surely only one is needed that contains details of all health data. The current system is disjointed and confusing “

“It would be ideal to have a single point of entry to ALL NHS services, records and so on. Patients Know Best is a step towards that.”

Access to a greater range of test results and information, and shorter intervals between receipt by patients and follow-up by services.

“Include all test results as soon as they are available.”

“Would like MRI, CT scan, ultrasound etc. reports to be available to read.”

Improved information around test results, with clarification on their meaning and how they will be followed up by health professionals in a timely way.

“I have no idea how to interpret results and had an anxious wait. I do believe it’s good to have them to refer back to but only after they’ve been explained and accompanied by a report in layman’s terms.”

Increased communication options, reducing the need to contact services via methods outside of the platform. Greater use of plain English on the platform.

“Communication with GP or Hospital to save having to make a phone call.”

“It would be good to include a directory of medical abbreviations.”

Next steps

As the public champion for local health and care services, Healthwatch East Sussex will continue to work in partnership with commissioners and providers to monitor the experiences of patients and the public in accessing health and care services locally and explore how ongoing improvements may be delivered.

We will share the attached report with Brighton and Hove City Council, NHS Sussex, Healthwatch England and others to share this insight and encourage its incorporation into future initiatives.