PICH 18/19 Learning Seminar 2, Nov 2018 – Patient experience and involvement

Deepening our understanding of patient experience at this month’s PICH seminar.

We had presentations from Bea (practice champion manager for CC4C connecting care for children), and Dr Heidi – Paed trainee at the Royal London and former research fellow for CC4C.

Bea talked about collaboration of professionals and community members (on an equal platform) to meet needs of the local populations

Heidi described how to involve patients meaningfully in research, and how is it relevant to recurrent wheeze. 

Key links:

Connecting Care for Children: www.cc4c.imperial.nhs.uk.cc4c

Altogether better: www.altogetherbetter.org.uk

Public health info – Fingertips: fingertips.phe.org.uk

Presentation about Co-Design (Bea)

Collaboration of professionals and community members (on an equal platform) to meet needs of the local opulations

Tip to doing co-design: DON’T think in a clinical way!


Child Health GP Hub

Centred in primary care, built around monthly MDTs and clinics

One Based in Hammersmith and Fulham, co-design has helped bring about Saturday drop ins, Mums to be and 0-3 groups, buggy walking groups, and a Dads group

Practice champions

Know and understand their communities

Volunteers – application form identifies different peoples interests

  1. Different places have different terms e.g. “community champions” “practice champtions”

Example questions in co-design research

“What matters to you and your child?”

“What do you love about your GP practice?”

“How could you imrove your GP practice?”

Parkview Olympics (video)

Pilot project in White city

8-11 year olds

Brought together services that were already happening (e.g. Community gardening)

Children went from 0 hours of exercise outside school per week, to 2 hours.

Families exercising more together

Local stakeholders included QPR football team, Community gardens (Hammersmith community gardening association) and the London Sports Trust

How to do it again..?

Presentation 2: How to involve patients in research, and how is it relevant to recurrent wheeze. (Heidi)

Affects 30% of children in first 3 years of life

Less common in Greece than in UK – why?

Multiple phenotypes e.g. episodic viral wheeze, multiple trigger wheeze

Failure to discus environmental prevention of wheeze with families

Hospital admissions rates in UK are high for preschool children with wheeze, vs Australia for example, where 30-40% are discharged within 4hours, and >40% discharged within 7 hours

Currently there is no registry for “preschool wheezers” in primary care, some coded as asthmatic (at least they get follow up) some as infection

How do parents of preschool wheezers feel when they experience healthcare services?

An EMOTIONAL MAP was designed

Asked about their first encounter with services due to wheeze, and their emotions about it


Takes the story, breaks down the senstences into steps and then into codes/colours associated with neutral/positive/negative emotions.

This takes 2-3 or more people to arrive at a consensus on what negative or positive may be

Helps to turn emotions, expressed in vignettes/quotations, into data

Process: met familites at GPs, at St Marys hospital, at an ambulatory clinic in Hammersmith hospital

Some discussion points:

How to co-design a tool that can measure impact?

Are amazon/Google algorithms are kind of emotional mapping?

Patients wont tell doctors some things as they want to please them, sometimes better to ask an HCA/Pharmacist/practice nurse to ask the questions

This data was gathered retrospectively, retrospective analysis may color earlier feelings, but you could miss on the spot feelings which could be useful.


Challenge for the next month: Have a different sort of conversation with a patient, how they’re feeling and what matters to them.