Our patient and public involvement journey for the Earlier Detection and Diagnosis of Cancer Study, with the Epidemiology of Cancer Healthcare Outcomes (ECHO) group, University College London

1. Our PPI Journey
We placed an advert online with
PeopleInResearch.org to find people with
lived experience of a cancer diagnosis.
From all the responses, we tried to select
an even geographic spread and an
ethnically diverse group. We sent out a
summary of the study before inviting
them to meet.
We held three meetings with a total of 15
people contributing. Each lasted around
two hours, with two hours of preparation
work beforehand. Our meetings were
held online to accommodate people with
difficulties travelling and were structured
to allow discussion on each study
workstream.
Step 1: Recruitment
We took notes of everything that was
said during our online meetings and
pooled these together.We then used
analysis software to help us organise
what was said into groups of themes.We
linked these themes to direct changes
that could be made to the study and used
quotes to highlight each topic area.
Step 3: Analysis
Epidemiology of Cancer
Healthcare Outcomes
(ECHO)
Step 2: Meetings

2. The results
(RegardingWorkstream 1): “It sounds very attractive if it helps narrow down patients that
might be high risk. But will need to be convinced by some evidence whether you’ve already
tested that …. is what you’re proposing feasible and doable.”
We have a range of pilot data which we now better illustrate in the application.They
relate to substantive findings from the recently successfully completed PhD of UCL’s Dr
Meena Rafiq.
Combining symptomatic presentation and blood tests
“Problem with symptoms is the huge variance in cancer, been involved with previous
studies that looked at… every kind of symptom because of the number of different
cancers”.
Given this and other considerations, and committees comment, we focus on non-
specific symptoms and their combinations with other non-specific symptoms and blood
tests.
Diverse range of symptoms of possible cancer
“Cost element is fundamental to all this, been involved with new kinds of test but they
never seem to go anywhere because of the cost element.”
Bolstered our emphasis on examining targeting approaches, and supported our decision
to include a new workstream, dedicated to health economics (4).
What we did
What was said
Health Economics

3. “Some cancers can be found quite early, maybe through genetic testing/DNA fragments –
how useful is that compared to blood tests? Could these kind of tests be used to better
determine risk than blood tests?”
Supports our intention for workstream 2 to encompass existing tests, & to develop an
approach that is ‘test-agnostic’, to enable the broader use of our approach/platform for
emerging tests.
Incorporating emerging tests into workstream 2
“There’s a lot of value in considering optimal testing strategies from a patient perspective
because once patients have more tests, they get more anxiety and pain and discomfort.”
Triangulates the importance of both positive and negative tests.Within workstream 2
we now illustrate the value of re-classifying risk downwards (when a test result is
negative).
Importance for patients of negative test results
33%
17%
33%
17%
18 - 35 36 - 55 56 - 70 70+
Age Group
57%
14%
29%
Region
Northern England Midlands Southern England
50%
10%
40%
Ethnicity
White British British Chinese Asian British
13% 13% 13%
63%
Secondary
School
College Undergraduate Further
Education
Educational Level
Who took part?