An award-winning collaboration empowering patients to manage their care

Gurpreet SaraiNews, Slider

Matt Arnold, Swansea Bay UHB Senior Project Manager with David Florentin and Lewis Jenkins, Patients Know Best

During a special event in Swansea on Wednesday night (4th December), Patients Know Best (PKB) and Swansea Bay University Health Board (SBUHB) were recognised for transforming healthcare services, winning the prestigious MediWales Award for ‘Partnership with the NHS 2019’.

For over 3 years, PKB has been working with health boards across Wales to empower patients with the tools and information to self-assess and manage their care. In Swansea Bay University Health Board, PKB is active across 15 services including dermatology, audiology, cardiology, rheumatology, diabetes, gastroenterology, urology and breast services – where for the first time, patients are taking control by choosing who to share their information with. From clinicians, family, friends or carers, they are joining up information to ensure they always receive the best care, no matter where they are.

Patients have been able to send asynchronous messages to clinicians, conduct virtual consultations, access a library of resources, co-edit and co-create care plans and track symptoms to spot deterioration early. Patients also have access to their test results in real-time and with granular consent, they have the power to decide who they share this information with.

As the first organisation in Wales to connect to the NHS Wales National Informatics infrastructure, PKB has currently supported over 2,000 patients in Swansea Bay to access their lab results including historical blood results. This partnership is leading to even more data being shared and made available to patients in Wales. The collaboration also provides evidence of the following reported outcomes: 

  • A substantial number of patients with a PKB record repeatedly log in to their accounts indicating a high-level of patient activation and thus a desire to have and use this information to help manage their care.
  • Patients reporting that having a PKB record gives them the tools and information to better self-manage their disease.
  • Clinical teams reporting that they are able to reduce unnecessary outpatient follow-ups and instead manage patients remotely.
  • Clinical teams reporting that PKB helps assess monitor patients in between appointments more effectively.

The award marks a special milestone in the collaboration. Accepting the award, Lewis Jenkins, Success Executive at PKB said: “It’s an absolute pleasure to receive this award on behalf of Patients Know Best and Swansea Bay. Patients are at the heart of everything we do. Every day we strive to integrate care around patients – sharing with them the wealth of information they deserve, in one place. We’re honoured to have been recognised for our work to empower patients but needless to say this wouldn’t have been possible without the outstanding effort of the organisations that we collaborate with, particularly Swansea Bay University Health Board.” 

A few examples of how patients have directly informed the use of Patients Know Best in Swansea Bay include:

  • Rheumatology Service – the team have used local patient group meetings to demonstrate PKB and explain its intended use to maximise usability. Patients who are prescribed disease-modifying medications are using the system to monitor side effects and communicate digitally with their doctors and nurse specialists about their medication needs.
  • Urology Service – the clinical team who manage patients with prostate cancer 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.