Virtual Dragons Den Report April 2021

Virtual Dragons’ Den Report 29th April 2021 On Thursday 29th April, the Cicely Saunders Institute (CSI) hosted its third virtual patient and public involvement (PPI) dragons’ den session. The dragons’ den session provides a unique opportunity for researchers to present new or ongoing research plans to patients, carers, family and the public for immediate input and feedback. The dragons’ den is also an excellent opportunity for researchers to offer invites to PPI members for future involvement. 17 PPI members attended, and 2 researchers from the CSI presented their research on the topics of understanding costs of care for people with dementia at the end of life and addressing social isolation and loneliness in people with breathlessness.

The rest of this report details the content of the dragons’ den session and feedback received, concluding with recommendations for future events.

Section 1: Dragons’ den details and costs (page 2) Section 2: Feedback (page 3) Section 3: Conclusions and recommendations (page 4)

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1. Dragons’ den details Hosted by: India Tunnard, Lisa Brighton, and Cat Harvey Participants in attendance: 17 PPI members, 2 researchers (including Lisa Brighton). Costs included payment for PPI members in recognition of their time and expenses for formal carers (total = £544.70) Session

Facilitator(s)

Welcome and introductions

India Tunnard

First presentation • Room 1 - Lisa Brighton - Addressing Social Isolation and Loneliness in People with Breathlessness • Room 2 - Javiera Leniz – Understanding Cost of Care for People with Dementia at the End of Life

India Tunnard and Cat Harvey

Break Second presentation • Room 1 - Javiera Leniz – Understanding Cost of Care for People with Dementia at the End of Life • Room 2 - Lisa Brighton - Addressing Social Isolation and Loneliness in People with Breathlessness

India Tunnard and Cat Harvey

Break Feedback and further comments

India Tunnard

Thank you and closing remarks

Lisa Brighton

The 17 PPI members were split into two breakout rooms to hear the first presentation of the session. Room 1 heard from Lisa Brighton whilst room 2 heard from Javiera Leniz, followed by discussion. The presenters then switched breakout rooms to give their presentations to the remaining PPI members.

Lisa Brighton: Addressing Social Isolation and Loneliness in People with Breathlessness Lisa presented a proposal she is developing with Matthew Maddocks on ‘Addressing Social Isolation and Loneliness in People with Breathlessness’, which they plan to submit to the NIHR’s research for patient benefit program. The aim of the proposed project is to co-design resources and strategies to support people with chronic breathlessness who are feeling socially isolated or lonely. Lisa asked the PPI members what concerns they might have about the research plans, what the key selling points are to highlight, and what might be improved on in the proposal. PPI members agreed that it was a worthwhile project, and they highlighted the need for innovative good quality information and local and national support. A number of PPI members mentioned the British Lung Foundation ‘Breathe Easy’ groups. The PPI members reflected on the fact that breathlessness can knock an individual’s confidence and it can be an isolating experience. PPI members thought the idea of co-production was a very positive aspect of the project. It was highlighted, however, that ensuring good representation from less heard groups will be challenging.

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Many PPI members felt it was an opportune time to join the conversation about breathlessness given the impact of COVID and long-COVID on the respiratory system.

Javiera Leniz: Understanding Cost of Care for People with Dementia at the End of Life Javiera presented her study ‘Understanding Cost of Care for People with Dementia at the End of Life’.

Javiera shared with both groups her presentation which outlined the progress of the study. PPI members commented on ‘invisible costs’ such as the physical and mental health needs of carers and loved ones. A PPI member shared her experience of trying to access a small carer’s financial award, which in the end was too complex and stressful for her. The group also highlighted the psychological impact and potential stress of receiving care in different settings (e.g., in the comfort of home or in hospital). The group mentioned coordination of care as key to effective use of resources. In addition, they suggested clearly defining the cost of care as the direct cost of caring for patients. Indirect costs include both caring costs and bereavement support costs.

2. PPI feedback The following graph and table summarise evaluation responses from PPI representatives: Graph 1: How useful was each session

How useful did you find the following sessions?

9 8 7 6 5 4 3 2 1 0 Dragon’s Den researcher presentationDragon’s Den researcher presentation and discussion - Addressing Social and discussion - Understanding Cost Isolation and Loneliness in People of Care for People with Dementia at with Breathlessness the End of Life

Very useful

Useful

Not sure

Not useful

3

Group feedback session

Not applicable to me

No answer

3. Researcher feedback The following graph summarises evaluation responses from researchers who attended the workshop.

Graph 2: Feedback from researchers in attendance 2

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0 I feel that I benefitted from presenting to the lay members / attending workshop' Strongly Agree

I was able to make contact with someone who I may work with in the future' Agree

Not Sure

I received useful feedback The workshop will help to from lay members' improve future research at the CSI'

Disagree

Strongly Disagree

Not Applicable

4. Conclusions and recommendations The virtual dragons’ den provided an opportunity for discussion among patient and public representatives and researchers. It was also an opportunity for patient and public involvement members to connect socially with like-minded individuals. The virtual dragons’ den was well attended, with a mixture of both new and more experienced members. The groups were very engaged in both the breakout rooms and the larger group discussion at the end of the session, providing researchers with valuable feedback and new points to consider. However, it was suggested that background and the slides for each of the dragons’ den presentations could be circulated in advance to help focus discussions on the day.

Feedback received has identified the following areas for improvement: a) More targeted questions from researchers are needed to steer the discussions in the dragons’ den sessions. These questions should be made available for PPI members to refer to throughout the presentation and discussions (either circulated in advance, or visible in the Zoom chat function). b) A copy of the presentations should also be circulated to PPI members ahead of the session. c) Closed captions are needed and could be enabled for future dragons’ den events to ensure all can follow the discussions clearly (either through Zoom’s live transcription service or through the use of Otter.ai https://otter.ai/login)

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d) Use of the polling feature in Zoom could make discussions with PPI members more interactive. This can provide a quick snapshot of the group’s opinion on a matter raised by the researcher. a) A copy of the chat should be sent to all attendees (with permission).

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