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Public expectations from a digital clinical outcome assessment tool

29 July 2026 by in News Items

A co-design exercise with people with advanced breathlessness and those who care for them

Sam Cassidy and Mevhibe Hocaoglu

Postdoctoral Research Associate, Mevhibe Hocaoglu, invited people living with breathlessness and people who had cared for people living with breathlessness to a series of 3 workshops in June 2026. The aim was to understand daily challenges of breathlessness and understand what a useful tool would look like to patients and carers.

These highly engaging sessions were held over Teams. These dynamic conversations led to many insights into the many ways breathlessness affects people. This includes the obvious – feeling out of breath – but also indirect impacts, for instance its effect on eating.

Common everyday challenges included:

  • Managing coughing episodes
  • Concern about going out in case they needed to rest
  • Relationship issues
  • Accessing care.

Many challenges led to stress and anxiety, and the group talked about the link between physical and mental health. Intimacy issues were highlighted as a major hurdle. People said they did not want to burden their adult children with health concerns since they were often working and had children of their own.

Fatigue made everyday tasks more difficult. People emphasised needing more time to think, feeling tired and drained, and experiencing brain fog. Accessing care was seen as a postcode lottery, as well as a challenge to make it to regular clinic appointments because of travel requirements and parking.

We asked how all these considerations might be best captured in a tool. Participants gave insights into how a tool might work. There were some key points that came up across each session:

  • Easy to access and complete
  • Secure
  • Emergency alert button when urgent attention was needed
  • Ability to see previous responses
  • Answers linked to NHS records

Feeling heard and responded to was key. There was also a strong emphasis that no-one be left behind; people acknowledged that not everyone likes things being on a phone. One person suggested having booths at social hubs (for instance, GP practices, pharmacies, post offices) where people could access the form.

A live scribe was present in one session, and they did a great job of capturing key points for us. Since the workshops, we’ve been producing a series of infographics, and are exploring ways we can make the wish list a reality.

Ultimately, this work will inform the core elements of a digital tool that is simple to use and interpret, and captures what’s most important to people living with breathlessness. Patients will be able to monitor their symptoms and concerns, and communicate their most urgent needs directly to their clinician to be actioned. Participants envisioned it becoming part of the NHS app so it can be linked to their care plans and other relevant records.

This study was funded by NMPC Faculty seed corn, led by Mevhibe Hocaoglu, Irene Higginson and Charlie Reilly. Juan Pablo Alvarez Ayala and Sam Cassidy helped to facilitate the workshops.