Patient Advisory Group meeting - 10th January 2024 

Background

PKB has always gathered feedback through our network of users and our support desk so that we can respond more effectively to users needs with informed solutions.  We expanded this by organising Patient Advisory Group meetings to engage with patients to better understand the patient experience of PKB and gather insight and feedback directly. These groups allow patients to share their experiences and provide PKB with the ability to seek advice and feedback in a structured discussion format. 

We ran the first session with a small but diverse group of patients who use PKB and are based in North West London. The session was held at 6 pm on 10th January 2024. It was an extremely interesting and useful meeting, and we feel privileged that patients were happy to offer their time to share such valuable insight and feedback. 

Summary of findings

How were these patients introduced to PKB?

• One patient was introduced to PKB by their GP, and the others heard about it during a hospital visit.

• One patient signed up after seeing a poster in a hospital room. They said PKB was not mentioned or advertised by clinicians and felt a lot more people could benefit from PKB if they were told about it.

  • They felt that some of their clinicians respond well if you utilise a portal like PKB when attending an appointment as you can provide additional information on your health however, they also felt that other clinicians saw it as a burden and thought this might be because the clinician felt it disrupts the appointment plan.

• A second patient said they also saw it on a poster but no one had suggested it to them directly. They thought this might be due to a lack of hospital resources to input data or that the hospital was worried that patients might not be able to cope with the information sent to them.

• A third patient also felt PKB was not advertised by care settings very well.

• A fourth patient felt that most of their clinicians didn’t seem to have heard of PKB.

  • They said their clinicians don’t seem to interact with it and felt this might mean they don’t see the importance of it.

• One patient mentioned that the receptionists in their medical centre won't issue a printed copy of the discharge letter or blood test result - so that might be why there is a reluctance in information being shared but sometimes you need this very information very quickly.

Features most useful to these patients

• All patients mentioned test results as the feature they find most useful in PKB.

• Most patients also mentioned appointments and receiving clinic letters.

Features these patients don’t use or would like to be improved

• Some of the patients would like to use messaging and files but their clinical teams were not utilising these features.

  • One mentioned using an alternative portal for messaging their clinical team but that this app seems limited to information from a single hospital.

  • Another mentioned they also use the same app but explained they need both as each has its own strengths and weaknesses.

• One patient didn’t understand some headings in areas of PKB, such as ‘consultations’.

• One patient felt there are large parts of PKB that seem redundant because they cannot quite figure out what they are there for as they don’t seem to be populated with information.

  • Another patient explained they use most features even if the hospital doesn't (they update the record themselves and gave examples of adding things like optometrist reports or care plans).

• One patient highlighted an issue on the Tests page, where blood tests of the same type are shown in separate charts if sent from different hospitals and this felt like a bug in the system.

• One patient mentioned that seeing the logo of the hospital that created your PKB record is confusing, as it makes you think it’s just for that one hospital but it’s not.

• One patient mentioned they find data comes in assigned with incorrect privacy labels. They were unaware that the patient could change privacy labels for any item

• Two patients mentioned that they do not get all their clinic letters through to PKB, some still come via post instead. They would prefer all their documents come through to PKB

  • PKB explained there will be several different computer systems within a trust and sometimes it takes time for the hospital to integrate them all - so might be that just some of the systems are sending letters to PKB.

Navigation - Caring section

• Many of the patients didn’t realise that they could add carers to their records or access records of people they care for.

  • One gave the example of how it would have been useful to add the district nurse when under their care

  • One patient mentioned they would have used this for their mother’s record as she was unable to manage it herself.

• One patient mentioned that perhaps relabelling the section may help people find it and understand its potential. 

Notifications

• Notifications are very useful when they are about new or updated data such as results, letters or appointments.

• Notifications are much less useful when they are about things like demographic changes.

  • Two patients mentioned PKB 'profile' update emails and how the email/change wasn’t clear.

• Two of the patients agreed they would like to have the ability to choose what type of notifications they receive

• Inconsistency of notifications is an issue, as not always notified about everything

• Some updates would be more useful if the information from the hospital was more accurate and detailed (ie sometimes appointments don’t include department or clinician)

• It is nice to be notified about all data, but does not need to be in individual notifications, it could come in the format of a daily summary of updates.

• One patient would like the option to select SMS updates

• Not all of the patients knew what the NHS App was but most of the patients said they were happy to receive both a Native App (NHS App) and email notification (PKB)

  • One patient highlighted that not all patients can hold a smartphone due to physical impairments (including themselves) and others cannot use a smartphone as they require a fully assisted keyboard or due to other accessibility needs. This means some will not have a device to receive NHS App notifications (they will use the web version instead).

• It would be better to have a single notification on the notification panel on the homepage when new test results come in, otherwise they can take up a lot of room and other notifications get lost

Other

• Not all patients were aware of the PKB manual (accessed via PKB Help)

The next steps for PKB

We have summarised below the areas for PKB to review as to how we can improve the website for our patients.

• Look at how we can make patients better aware of the manual

• Look at how we can make notification emails clearer - particularly those addressing profile updates

  • Update: We will no longer send profile update emails when the only thing that has changed is the patient's demographics as patients do not find these emails beneficial 

• Look at how we can provide patients with more control over which notifications they receive

  • Update:  PKB will be adding an option for patients to unsubscribe from non-essential email notifications. All email notifications sent to patients and their carers will have a link to their profile page where they can unsubscribe. Once logged in, a patient can select whether they will get all email notifications or essential emails only. If the patient selects 'Essential emails only' they will no longer get emails about demographic updates and new data such as allergies, diagnoses & test results. They will continue to get emails deemed essential, which will include emails about appointments, messages, documents and access changes.  ETA: Feb/March 2024

• Look at how we can provide patients with SMS notifications

  • Update:  PKB will be adding separate fields for different phone number types so that users can record their mobile numbers and mark them as such so that SMS outreach is possible in the future. 

• Look at how we can encourage hospitals to send more detailed information, particularly around appointments

• Look at how we can support trusts using other PKB features

• Look at how we can support trusts in raising awareness of PKB to patients

  • Update: Our communications team is currently reviewing what additional tools we could provide trusts with to help raise awareness. 

• Look at how we can support hospitals to map their blood test results to clinical coding (LOINC) so they can be mapped and displayed with the same test types from other hospitals on PKB

• Look at relabelling and relocating the Caring section so patients know how to share their records and when to access others

• Look at how we can make it clearer that patients can edit their privacy labels

This process will begin with a Product team review of each item, this might include further discussions with users, analytics of usage, design sessions, usability and prototype testing.

Once any changes are approved and finalised, we can look at when, and in what order they might be scheduled on the PKB roadmap.