Improvements based on feedback from UK Kidney Association patients

We have been rolling out Patients Know Best (PKB) to renal teams across the UK.  This is part of the UK Kidney Association (UKKA), formerly known as The Renal Association, re-platforming from their national patient-facing system PatientView to PKB across 72 hospitals. This switch will provide renal patients with a more secure platform with improved functionality, giving patients more data and more tools to manage their condition.

UKKA patients care a lot about seeing their data and are very experienced in how to interpret that data. As part of the rollout, we have been conducting user research with them. This is so we could find out more about how they use their health records and whether we could improve the display of their health information. They were very vocal about what PKB needed to improve and we found their feedback extremely useful. We have thoroughly enjoyed working with these patients and feel honoured that they were willing to spend time to talk through their health journeys and explain to us how access to health records has changed their relationship with their disease.  Getting to hear first-hand how they manage their health and also support others going through similar journeys has been both moving and inspiring. 

Findings from interviews

Patients said the most vital information to them was their latest set of test results. Some even wake up in the middle of the night just to check them. These test results inform the patient on how their disease is doing.  In some cases, also indicating whether they should change their lifestyle in some way or seek further medical attention. Some patients felt that PKB could improve the way this information was presented, to allow them to see their latest test results more clearly and give them access to a condensed list of recent results. 

We created new designs thanks to these patients.

The first round of updates

Firstly, we will be adding the value of each result to the notification panel found on the patient homepage. When a patient logs in, they will immediately see their latest test results within the panel. The link to view further information will remain available, so users can quickly navigate to further information and past results for that test. 

Before:

After:

Our next change is to highlight the latest value on the graphs of all the test pages. To do this, we will only  be highlighting the value for the latest result on the graph and making the value text more prominent. Users will still be able to see values for other results by hovering over the data point, which will bring up the value in a pop-up menu. Within the pop-up menu, we are reordering the data so the value comes first. 

Before:

After:

The second round of updates

We are currently working on designs for a condensed list showing the latest results so patients can review them all together at a glance. We will be taking these designs back to patients for further usability testing, but the improvements we are looking to make are: 

  • separating the latest results into a list view
  • showing key information on the page in a condensed version
  • indicating whether the results are up or down from the previous value
  • allowing users to search for test results in the list 

User research

User research helps us to understand how other people use Patients Know Best (PKB) so that we can respond more effectively to their needs with informed and inspired design solutions. If you would like to get involved with our user research, you can read more about how to get involved on our User Research pages

2 comments

  1. I would like to see the sequential results in the context of the normal range or an optimal target range.

    I would like to see medication always linked to a problem and aim. Far too often these days neither the patient nor the doctor knows why a partiular drug is being given nor whether or not it is working as intended. There is little record of whether the aim has been achieved or if the patient can manage with a lower dose or even without. This is most common when new medication has been started in a different care sector or when a drug has been on repeat prescription for a long time. In practice it can be very difficult to pursuade the GP to stop drugs as they dont always know why the patient is having them. No wonder so many old ladies have drawers of unused pills. This may be a bigger problem when the prescriber and consumer are not responsible for the cost as in the NHS. It is a safety issue as well as a moral and financial issue. What is the point of having a qualified person doing repeat prescriptions under these circumstances?

    I would be interested in contributing further to developing the system. I first described patients wishes for RPV when I wrote and researched patients wishes for the renal Information strategy and NSF around 2002-5. Since then I have spent a lot of time thinking about how the individual patient record should function and recently started making contact with people in this area. There is still a lot of ignorance about the role of the patient and a patient centred record.

    There is often insfficient attention given to the future, the plan, the next steps and the minimum information essential to safe transfer of care, whether it is planned or emergency. There is too much emphasis on what has been done and not enough emphasis on making the patients future better and safer.

    PKB has a different mindset to many of the traditional organisations so perhaps I am preaching to the converted, or perhaps I can help a little. I would be happy do do so if I can.

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