Effective PPI…
A Patient Perspective
Maggie Wilcox
My Background…
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Health Visitor then CNS Palliative Care
Breast Cancer Patient
Nurse
Network research and SS Groups
Carer
Breast Clinical Study Group for 5 years
Advocate
UK Breast Intergroup
Cancer
Research
BC Campaign Tissue Bank
Patient
Confederation Cancer Biobanks
HTA & HRA Stakeholder Groups
EU Commission Breast Working Group
ICPV!
…A PERSON BEFORE A PATIENT
A patient advocate group, led by
patients, for patients
• Aims to improve clinical research through partnering
with clinicians and healthcare professionals
• Members involved in many areas of cancer research
• Focus Groups & Peer Interviews – Warwick CTU
• Summer school and study days – Shore C (Brighton)
• VOICE 5 day residential science for advocates - Barts
• Recent symposium on multiple biopsies with multidisciplinary group at ICR/RMH
‘’Dragon’s Den”
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for new Clinical Trials e.g. LORIS, SENTIMAG
Researchers - 15 min presentation followed by open discussion and Q&A
Interesting, lively and challenging debate
Very positive feedback
ICPV member joins trial working group
• Adaptations since meeting
– trial design and/or protocol and by CLG for use at NCRI
• Both Lay and Professional Feedback shows
– Valued event
– Enjoyable and Educational
– Increases confidence in collaboration
Collaboration
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Professional Colleagues – local, national, all disciplines
NCRI – Clinical Studies Groups, HUB, Forum, CTRad
ECMC, Academic Centres, NCIN, SLOANE Group
Local Network Activities – tumour groups and CPRGs
HRA, HTA, NICE, APPG on Cancer, ABPI, MHRA
Wellcome Trust, Sense about Science, CRUK
Other cancer charities e.g. Cancer52 and Brainstrust
Also ECPC, NBCC and Alamo Advocates, ASCO Guidelines
• We need to remain Independent to provide a direct and
unfiltered patient perspective in cancer research
GUIDE-care
ELENOR
COSTA-TRUC
RCAHT
ARISTACAT
FOCUS4
PRIMETIME
ASPIRE
STAMPEDE
HOLySTIC
ANCHOR
REMoDL-B
EPAN
IMAGINT(EU)
IPET
AWOS
PROMIS
IBIS 3
TRACTOR
MABCAN
TOMMY
SURECAN
Trainees
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West Midlands Collaborative
ICPV members invited to attend meetings
Comment by email on proposals
Join working groups
Eg MASDA – current Mastectomy Audit
Mammary Fold
PhDs & PostDocs at VOICE Course
We Are Patients
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Are anxious and dealing with a new experience
Listen but don’t always hear
Many will have received lots of well meaning but
erroneous information
Will have been on the internet without guide to credible
information
Need honesty, someone who listens as well as talks, deals
with the person as well as the tumour
Most of us are tougher than you think…
… were people before we were patients
…have different work & life experiences (including ages, cultures,
family support, financial needs)
…often do want to participate in research
Patient Treatment Concerns
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Survival is key outcome
Adequate surgery that takes account of cosmetic result
Pain control and care throughout treatment
Clear & honest information about all the options including potential trial participation
Time for decision making
Quality of life after treatment – Quality as important as
Quantity
Patients as
advocates…
Overtreatment and/or Overdiagnosis?
Overtreatment…just DCIS?
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Over treatment doesn’t just apply to DCIS
R/T dosage almost halved after quality research showed
that reduction was safe with modern targeted
treatment
USA overtreatment of lobular means that surgery there
would have been bilateral mastectomy whereas I was
treated in UK with wide excision.
Current Trials should lead to less axillary surgery and
reduction in length of Herceptin treatment
Patients welcome research which enables safe
reduction of any cancer treatments
Patients Support LORIS
• We need trials like LORIS
• We want evidence based treatment
• We are interested in taking part in trials
• We could be interested in tissue donation
• We might consent to multiple biopsies
We should be asked – we can always say NO!
How Can ICPV Help
Researchers?
• PPI is becoming a funding requirement
• We provide effective PPI – “not tick the box” variety
• Honesty – if we think something is not right, we will
say so – Constructive Criticism!
• Provide letters of support for applications
• Protect needs of the patient- ensure patient benefit
• Suggest protocol and PIS improvements – Increase
recruitment?
• We can help with links to other groups in UK & abroad
We believe that clinical
research and practice is
improved by patients
being partners with
clinicians and healthcare
professionals, rather than
passive recipients of
healthcare
Patient Advocates & BCN TB
• Two involved from inception
– Worked together, complementary skills
– Site visits, Management, Tissue Access
– Succession planning & Mentoring
• Genuine desire for meaningful involvement
– Both staff & (most) professionals
– Good working relationship, feel valued and heard
– Learning together, willingness & enthusiasm
Patient Advocate Influence
• Suggested groups collecting tissue should work
together
– led to the formation of a larger tissue bank.
• Won over the sceptical
• Ask the “elephant in the room” question
• Changes to Tissue Access policy
– Patient benefit must be clear
– Understandable lay summary before review
– Discussion on application before decision
• Patient to Patient Leaflet
View from the BCN TB chair
• Been the most supportive of all groups for bank
– despite having no personal vested interest
• Kept us grounded in reality
• Very helpful with ethics & information sheet issues
• Made us all realise standard practice is terrible waste
of resources
– throwing away tissues
• Been real pleasure to work with
– good comments and responding to emails better than
"professionals"!
Communicating!
5 day “Science for Advocates”
residential course - the only course of
this kind in the UK
Patient advocates: far more involvement than just
the patient information sheet..
Cambridge-Independent Cancer Patient Voice Meeting, 2016
“We need to work with our patient advocate colleagues
in partnership through all stages of study design,
funding application, trial set up, recruitment, analysis
of results and final publication. This ensures that all
aspects of the process are patient-centred and this
improves overall quality of the research”
Dr Charlotte Coles, Chief Investigator
IMPORT Trials
Maggie Wilcox, lead for
ICPV, member of
numerous TMGs
Designed assessments relevant to patients
P R I M E T
I M E
Eligible Patient Group (n=2400)
• ≥60 years
• T1, N0, G1-2
• ER/PR+ve, HER2-ve
Central testing of Ki67
WLE & SLNB
Confirmation of eligibility - PRIMETIME study
registration
Hilary Stobart, member
of ICPV, CTRad & TMGs:
Key involvement in
changing study design
so more acceptable for
patients
IHC4+C score:
very low
IHC4+C score:
Low, intermediate, high
No Radiotherapy
Radiotherapy
(endocrine therapy as per
standard of care)
(endocrine therapy as per
standard of care)
Things To Remember…
• We need time to respond - we are volunteers
and have lives outside cancer
• Tips for PPI – check out the INVOLVE website
www.invo.org.uk for information on
engagement, good practice, payments &
budgeting for PPI
Thank You
Any Questions?
Maggie Wilcox
[email protected]