Unboxed has recently begun a “top-up” discovery phase with the team at Compassion in Dying to understand a core problem — people who are given a life-changing diagnosis are not accessing the information they need and want when they most need it.

Last week was the project’s first show and tell, where the Compassion in Dying/Unboxed team shared progress with the wider team from across the first sprint:

Compassion in Dying team

Stakeholders and team members joining the sprint one show and tell.

Sprint one: Key milestones

The focus of this sprint has been across three core areas:

1. Desktop research

Exploring and evaluating existing resources, systems, websites, tools and articles that are already available out there and may be solving similar problems. Are they able to meet the emerging needs we’re hearing and the problem we’re trying to solve?

Desktop research

Desktop researching.

2. Arranging user interviews

Identifying, arranging and confirming a wide range of different people to interview during the next few weeks of this discovery phase:

  • People — those with a life-changing diagnosis
  • Stakeholders — healthcare practitioners and academics
  • Other interested parties — anyone else involved or interested within this area

Identifying and reaching out to people for interviews.

Identifying and reaching out to people for interviews (via digital and non-digital channels).

3. Carrying out user interviews

So far, 10 user interviews have been conducted (both face-to-face and over the phone) with people, GPs, Oncologists, Consultants and the Compassion in Dying front-line support team.

From each of these individuals interviews, key insights have began emerging including:

  • Some people not understanding how sick they are

Some people often have a diagnosis (a working label) but don’t have something that helps them to understand what the likely trajectory of their illness is going to be and whereabouts they are within this. If people were more aware, they may start looking into it more closely.

Phone user interviews.

Pairing on phone interviewing.

  • Practical information, as well as medical information

One interviewee is very much in the ‘eye of the storm’ — currently in a period where she’s desperately trying to find out if and how she can organise for her ex-husband to come home, following his terminal cancer diagnosis. For her, the lack of coordination and inability to talk to one person who can sort out her issues is a major issue.

  • The role of the Clinical Nurse Specialist (CNS)

The role of the CNS has consistently arisen in interviews as a good source of information, as someone who is accessible and able to answer the questions that might not be brought up in consultations. The CNS has consistently received positive feedback from those who have been interviewed.

Shadowing the Compassion in Dying support line team.

Shadowing the Compassion in Dying support line team.

  • Information ‘delivery’ in appointments

The setting in which information is delivered during an appointment is one issue that is consistently cropping up. It has been recognised, through one interview, that one person recognised a particular instance where she didn’t have someone with her during her appointment, resulting in a feeling that what she was told “went in one ear and out the other”.

Sprint retrospective

To wrap up sprint one, a retrospective provided a platform for our core team to share:

  • What hasn’t gone so well this sprint?
  • What has been puzzling?
  • What has gone well?

Sprint one retrospective.

Sprint one retrospective with the core project team.

What’s next on our roadmap?

Across sprint two, the team is planning to:

  • Carry out 10+ more user interviews with people and stakeholders, including a focus group with the team at Greenwich & Bexley Community Hospice
  • Continue ongoing desktop research
  • Synthesise the outputs of user interviews to begin understand people’s needs