Skip to main content
Bevan Exemplar Cohort 5 Projects

MAVIS: Let’s talk About Porphyria

Alana Adams

Cardiff and Vale University Health Board with Meridian IT

Better Conversations, Better Experience & Better Outcomes using a virtual assistant


Porphyria is a rare disorder and this leads to a lack of awareness and understanding in the majority of clinicians. Specialists in the condition within the UK are few. In the acute forms of porphyria, drug administration can lead to severe side effects which may lead to hospitalisation. Avoiding only those medicines known to be safe becomes a lifelong determination for the patient with porphyria and any clinician looking after them.

Although advice is provided by the United Kingdom Porphyria Information Service (UKPMIS), advise is also sought by individuals from a variety of sources including the British Porphyria Association, other patients, facebook, porphyria specialists, internet

Providing timely, consistent and accurate information has direct links to treatment outcomes. Greater provision of information also has additional benefits of reducing anxiety. However, the demand for information may not be fully met based on the way the NHS currently provides services.

Porphyria patients have consistently been reported to desire detailed information about treatment, prognosis and side effects related to their diagnosis. However, many patients can leave consultations confused and unsure, due to challenges in communication between themselves and their clinician or an in-ability to recall information provided to them. Clinicians may overestimate the quality of their communication whilst underestimating patient’s desire for information. Combined with use of technical jargon, many patients report issues understanding the information they are given.

Frequently asked questions in the porphyria care setting that are directly amenable to machine leaning methods. Automation, helps to standardize care processes, improving outcomes and lowering the total cost of care.

Cardiff and Vale University NHS Trust run a nationally designated porphyria service as part of specialised services for the UK. The small groups of patients that access services through Cardiff, their carers and families have many questions about managing their condition and these questions are currently handled through clinical outpatients and a designated pharmacy call line managed by Cardiff and Vale.

Project Aims:

We propose to use MAVIS (Medicines Advice Via Information Systems) as a platform to train her AI to talk about Porphyria.

  • Proof of concept to see if a pre-existing platform (RiTTa) could be trained to successfully deliver a virtual service in another specialist area.
  • Using patient focus groups, identify suitable content for the virtual assistant
  • Pilot the system for three months with users of the existing service.
  • Capture the information on the value generated


This is a relatively new innovation in healthcare and as a result there is no strategy for the use of Artificial Intelligence (AI) and there is a lack of expertise. For newcomers a different set of skills are required even down to a requirement to learn and understand a new set of technological language.

“It looks to be a very valuable resource”

Chair, British Porphyria Association (BPA)

Next Steps:

There is a great deal of interest in MAVIS from the British Porphyria Association and the plan is to bid for funding to develop MAVIS further.



Dr Aura Frizzati

Kathleen Withers


Healthcare Technology Research Centre

Dr Phil Webb

Head of Value Based Healthcare

Artificial Intelligence SIG Welsh Government

CTM University Health Board