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Effective PPI…A Patient Perspective
Maggie Wilcox
My Background…
• Health Visitor then CNS Palliative Care
• Breast Cancer Patient
• Network research and SS Groups
• Breast Clinical Study Group for 5 years
• UK Breast Intergroup
• BC Campaign Tissue Bank
• Confederation Cancer Biobanks
• HTA & HRA Stakeholder Groups
• EU Commission Breast Working Group
• ICPV!
Nurse
Cancer
ResearchPatient
Advocate
Carer
…A PERSON BEFORE A PATIENT
A patient advocate group, led by patients, for patients
• Aims to improve clinical research through partneringwith 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 multi-disciplinary group at ICR/RMH
‘’Dragon’s Den”
• 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
• 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
AWOS
ANCHOR
ARISTACAT
COSTA-TRUC
EPAN
FOCUS4
GUIDE-care
HOLySTIC
IBIS 3
IMAGINT(EU)
IPET
PROMIS
PRIMETIME
RCAHT
REMoDL-BSTAMPEDE
SURECAN
TRACTOR
ELENOR
TOMMY
MABCAN
ASPIRE
Trainees
• 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
• 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
• 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?
• 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
I EMRP 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
IHC4+C score:very low
IHC4+C score:Low, intermediate, high
No Radiotherapy(endocrine therapy as per
standard of care)
Radiotherapy(endocrine therapy as per
standard of care)
Hilary Stobart, member of ICPV, CTRad & TMGs:
Key involvement in changing study design so more acceptable for
patients
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
