Working with patients to support transformational healthcare by Professor Diana Eccles, Dean of Medicine, University of Southampton

2. Wessex AHSN
Genomics workshop
22/11/2023

3. 3
Working with patients to support
transformational health care
Professor Diana Eccles, Honorary Consultant and Professor of Cancer
Genetics
Kelly Kohut, PhD student and Senior Genetic Counsellor at St
George’s
Dr Kate Morton, Senior Research Fellow
Professor Claire Foster, Professor of Psycho-oncology
Lesley Turner, Chair of Patient Reference Panel
Gillian Crawford PhD Senior Genetic Counsellor – mainstreaming lead
Dr Lucy Side, Cancer Genetics Lead Wessex Genetics Service
Dr Becky Foster, Research Fellow

4. 4
GENETIC TESTING FOR CANCER (RISK)

5. 5
Risk and uncertainty
Risk = probability x impact
Risk = probability x impact
Risk estimate/modelling
Personal experience
Health beliefs
Influencers
(perception)

6. 6
Influencers

7. 7
Risk Tolerance
Risk tolerance varies between individuals and circumstances
Risk aversion: more risk averse decision-makers’ tend to
discount the value of options that have greater uncertainty in
favour of options where uncertainty is minimized even if it
requires then to pay a premium to avoid such uncertainty.
Rules (guidelines) have the common effect of reducing patients’
and clinicians’ uncertainty about what to expect and how to act
and promote consistency of action in the face of uncertainty
Based on Uncertainty in Medicine: a framework for tolerance by Paul Hann

8. 8
Shared Decision Making
For many predictive genetic
tests there is clinical
equipoise regarding their net
value.
The “value” of a test may
depend on subsequent
actions/choices.
Choices will be preference-
sensitive and collaborative
deliberation is essential to
allow each person to make the
right choice

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Decision Aids
Decision aids are tools designed to facilitate shared decision
making and patient participation in healthcare decisions. They
help people think about choices they face, describe where and
why choice exists, and provide information about options. They
are best used when there is more than one reasonable option
for care.
Breast Cancer Choices: developed with patients and clinicians to
support women with breast cancer considering a genetic test.
Grimmett et al: Systematic review of the empirical investigation of resources to support decision-making regarding
BRCA1 and BRCA2 genetic testing in women with breast cancer. Patient Education and Counselling 2018: 779-788.
Grimmett et al: Development of Breast Cancer Choices: a decision support tool for young women with breast cancer
deciding whether to have genetic testing for BRCA1/2 mutations. Supportive Care in Cancer 2019; 297-309

10. 10
Implementation: Does use of the BCC decision improve the
“experience” of BRCA genetic testing?
Setting: Mainstream
Oncology
Design: Service Evaluation
Single arm
implementation study
assessing effect of DA on
decisional conflict

11. CanGene-CanVar
C Turnbull, M Tischkowitz, D Eccles

12. Work Package 4
Patient Tools
What do
patients want?
What do
clinicians need
to tell them?
‘A good
decision is one
that feels right
for me’
What is
deliverable in
clinical
practice?
↓ anxiety &
decisional
conflict
↑confidence with
(self) management
of genetic cancer
risks
Co-design of patient decision aids bridging the gap together
Kelly Kohut, Kate Morton, Claire Foster, Lesley Turner, Diana Eccles

13. What is important to people when
they make decisions?
https://doi.org/10.1111/hex.13844

14. Language + cultural translation
projects
Dr Raza Sayyed, Pakistan
Professor Ranjit Manchanda
& Quicksand India
Germany
Mev Domínguez-
Valentin &
colleagues in Peru
Finland

15. Infographics
designed in India
www.quicksand.co.in
Professor Ranjit
Manchanda
Jyoti Narayan,
Designer,
Experiential
Researcher,
Storyteller

16. Blog post
Barbershop videos: patients sharing
experiences with cancer

17. 17
The AHSN Innovate Award September 2023

18. 18
Information about genetic testing

19. Challenges
Software – keep contemporary
Hardware – host platform
Accuracy - in a fast-moving field
Responsibility – for decisions
Endorsement – trusted Kite Mark and/or promotion by trusted HCP
Dollars – long term sustainable funding model

20. YOUR QUESTIONS