MINUTES
Reference Group Meeting
Friday 20 November 2015
10.00am-4.00pm
Novatel, Auckland International Airport
Present:
Apologies:
Chair:
David Hamilton, Rob Corbett, Scott Macfarlane, Lochie Teague, Melissa Wilson,
Kirsten Ballantine, Amber Conley, Anne Morgan, Mal Joyce, Pru Etcheverry,
Heidi Watson, Robyn Kiddle, Jan Millar, Bruce Pilbrow, Catherine Thompson,
Emma Maddren, Karen Smith, Amanda Lyver, Sarah Eames, Catherine
Thompson, Caroline Folland
Deepika Singh, John Sanders, Andy Simpson, Fiona McGill, Darna Appleyard, Phil
Morreau
Rob Corbett
Summary of Action Items:
1. Lochie to formally write to CCF, L&B and CanTeen to request
support for ACCT membership
2. Contact radiation oncologists regarding their proposed work in the
Pacific.
3. Meet with NGOs to discuss how NCCN site revamp can provide a
central access point to all this information.
4. Scott and Melissa to continue to work with Andrew Wood to
progress planning for Symposium. Provide updates to Reference
Group by email as required.
5. Provide David Hamilton with tumour group summaries and
consider whether to make publically available on new website.
6. Scott to work with Robyn on alternative approach to classifying
CCF statistics.
7. Melissa to meet with Robyn and organize initial meeting for
Educational Support Working Group.
8. Organise participation certificates for Shared Care Updates
9. Review key NCCN communications and TORs to reflect
agreements regarding consumer engagement.
10. Convene working group to develop national statement regarding
MRI Scans with Gadolinium
11. Circulate shared care survey to Reference Group for comment.
Lochie Teague
Melissa Wilson,
Scott Macfarlane
Melissa Wilson
Melissa Wilson,
Scott Macfarlane
Kirsten Ballantine
Scott Macfarlane
Melissa Wilson,
Robyn Kiddle
Melissa Wilson
Melissa Wilson,
Scott Macfarlane
Scott Macfarlane
Melissa Wilson
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1. Welcome to new members:
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Bruce Pilbrow – CEO CanTeen
Caroline Folland – Children's Health Ambulatory Service Manager Service Manager,
Dunedin Hospital, Southern District Health Board
Pru Etcheverry – CEO Leukaemia and Blood Cancer New Zealand
Sarah Eames – Manager Cancer Services, Ministry of Health
Catherine Thompson - Advisor Cancer Services, Ministry of Health
2. Previous Minutes/Action Items
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Previous minutes reviewed and accepted as complete and correct.
Action items reviewed.
1. Lochie to organize meeting with
Robyn to progress to discuss
fellowship proposal and ACCT
funding.
2. Rob to confirm new South Island
Service Manager Representative and
advise group.
3. Melissa and Scott to investigate
options for consumer engagement
and report back to Reference Group
in November 2015.
4. Gill to raise linkages between
Radiation Working Group and Pacific
Working Group at meeting on
04.05.15 and report back to
• Starship has identified operational
funding to employ Fellow.
• Fellow position in Christchurch will
be funded through Paediatric
Department as in previous years.
• Funding for ACCT membership is an
ongoing issue.
• Current funding donated for 3 years
expires in 2016. Ongoing funding of
$30k needs to be secured.
• General agreement that ongoing
membership critical and beneficial
in terms of access to phase 1
studies, access to trials outside of
COG and efficient use of collective
fundraising across child cancer
services.
• Lochie to formally write to CCF, L&B
and CanTeen to request support.
• Caroline Folland – Children's Health
Ambulatory Service Manager
Service Manager, Dunedin Hospital,
Southern District Health Board
appointed and in attendance.
• Action complete
• Report tabled.
• Action complete
• The Radiation Oncology Working
Group has not had an update on the
topic in their two most recent
meetings.
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Reference Group in November 2015.
5. Melissa and Scott to seek undertaking
from Starship pharmacists regarding
regular updates to Medication
Information Sheets
6. Melissa to post Medication
Information Sheets on NCCN
Supportive Care website.
7. Melissa and Scott to work with Andy
Wood to organize the one-day
symposium
8. Melissa to discuss options for
increasing special interest group
(including Maori) representation in
Stakeholder Feedback research for
Counseling Framework.
9. Melissa to approach Ministry of
Education to secure invitation to
Special Education forum for CCF, L&B
and CanTeen
10. Melissa to forward information
regarding Paediatric Radiation
Oncology 2015 Teaching Course to
Paediatric Oncology Centres to notify
potential attendees.
• Gill's advice is for NCCN to make
contact with the radiation
oncologists directly involved in the
initiative to see what progress (if
any) has been made, and to make
sure all parties are working
together/share info where
appropriate.
• Melissa and Scott to make contact
as suggested.
• Radhika has undertaken to maintain
Medication Information Sheets.
• Action complete
• Information sheets available on
website
• Action complete
• Organisation underway.
• Action complete
• Stakeholder research completed.
• Action complete
• Invitations extended to CCF.
• Action complete.
• Information distributed.
• Action complete.
3. Service Agreement Audit Tool (Melissa Wilson) Shared Care
Agreements
• Report tabled
• Audit tool build is now completed and has been tested.
• A small number of residual issues require final tweaks.
• Tool will be launched online in the New Year.
• Project on schedule to be completed within agreed budget.
4. Website, Portal (Melissa Wilson)
• Report tabled
Portal and Website
Update
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Website maintenance underway to modernize look and feel and move to a more
dynamic platform that can be regularly updated.
Aim to include more information for stakeholders and provide linkages to ‘agreed’
advice for patients and families.
Maintenance on portal planned for early 2016 to simplify format and remove redundant
functionality. This will allow the site to be more maintained within standard servicing
arrangements rather than through more costly customized solutions.
Discussion regarding possibility of one-stop-shop website for child cancer services in
New Zealand as per childrenscancer.canceraustralia.gov.au
In New Zealand information is currently spread over a number of sites: NCCN portal,
www.childcancernetwork.org.nz, childcancer.org.nz, leukaemia.org.nz, canteen.org.nz,
kidshealth.org.nz, starship.org.nz, Facebook pages etc.
Melissa to meet with NGOs to discuss how NCCN site revamp can provide a central
access point to all this information.
5. Finance (Melissa Wilson)
FINANCE REPORT
• Report tabled.
• Tracking on budget for 2015/16.
• Anticipating full expenditure of $98k of project funds for audit tool, symposium and
counseling framework.
• Budgeting approximately $160k of reserves in A+ at end of financial year.
6. Symposium - Next Generation Sequencing, Molecular Targets & Individualized Therapy for
Non-Study Patients (Scott Macfarlane)
• Date for symposium has now been confirmed – Thursday 21 January 2016 – and save
the date notification has been sent out.
• Kate Janeway, Assistant Professor of Pediatrics, Harvard Medical School, has accepted
invitation to speak.
• Geoff McCowage has been invited to moderate the session.
• Discussions underway with Ministry of Health regarding participation of Ministry and
other agencies eg National Health Committee and Pharmac.
• Intent is to keep the forum relatively ‘boutique’ particularly in the afternoon session.
• Once we have an indication of numbers from these agencies we can consider how
widely to extend the invitation: laboratories, genetics, adult oncology etc.
• Venue is to be the Marion Davis Library which can seat 120 people.
• Scott and Melissa to continue to work with Andrew to progress planning and will
update Reference Group by email as required.
7. NZCCR Update (Kirsten Ballantine)
NZCCR Report
• Report tabled
• 2010-14 wave of child cancer incidence and survival analysis – preliminary verification of
NZCCR.
• Awaiting request from MOH Analytics Team for NZCR data to ensure completeness of
data set before commencing analysis.
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The ‘Margaret Lewis’ study - A comprehensive analysis of incidence, survival, 2nd
malignancies and late mortality (1978-1999)
Has received HDEC approval and is now just awaiting final locality approval
Application allows for subsequent research to be undertaken depending on the
preliminary findings.
Continue to receive requests for data eg dental late effects study, Dr Karen Tsui’s
medulloblastoma study.
Tumour group summaries have been completed. These are designed to assist Clinical
Research Assistants (CRAs) to input data consistently.
Kirsten to provide David Hamilton with Tumour group summaries and consider
whether to make publically available on new website.
8. Dental, Retinoblastoma, Proton Beam and Immunisation Working Groups (Scott
Updates
Macfarlane)
• Report Tabled
• Proton Beam Working Group awaits recommendation of Australasian working group
which they will adopt. Australian work is underway and has gone out for wider
consultation.
• Ministry reported on request from private clinician to meet with Minister Coleman. A
pre-prepared view would be beneficial to brief Minister in the future.
• Dental working group – dentists working through list of patients expecting a further 12
months of work before results available.
• Discussion regarding erroneous statement regarding the fact that there has been no
claim made for dental injury from treatment and that there have been a number of
claims made but the outcome of these is not widely known.
9. Professional Development (Jan Millar)
• Several VC meetings have taken place.
• Decision made to put develop nursing career pathway that covers both Christchurch and
Auckland scenarios. Work currently underway.
• Standardisation of care key issue for nursing workforce. Focusing on administration of
chemotherapy. Considering adoption of Australian modular system EviQ that is
underpinned by Quality Improvement. Pilot currently underway in MidCentral and
Wellington.
• Approach has merits from paediatric oncology point of view – robust, well tested,
updated regularly with evidence based practice. 2 New Zealand members have been
elected to the steering group.
• Will raise the bar in our training – increasing the transferability of nursing workforce
across centres.
10. LEAP (Scott Macfarlane)
LEAP Report
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Report tabled
Work underway to improve security of health passports. Concern is with potential
access to electronic records prior to being given to patients.
USBs currently not password protected or secure.
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Current security does not met requirements of IS department at ADHB
Investigating options for providing patients with access through an online portal
controlled by DHBs.
11. Pacific (Scott Macfarlane) Pacific Report
• Report tabled.
• Childhood Cancer International (CCI) previously ICCCPO is working with SIOP to improve
visibility for childhood cancer as non-communicable disease.
• Goal is to accept child cancer on agenda at WHO summit agenda next year.
• Consequence would be release of $millions to further extend development of
programme globally.
• Once hear what expected of us – after Geneva meeting in November – will take clearly
defined expectations to group to facilitate WHO NZ/Fiji participation
12. Protocols (Lochie Teague)
• Annual face-to-face meeting scheduled for Friday 27 November
• Paediatric oncologists and CRAs nationally to meet in Auckland.
• Will discuss and prioritise treatment protocols for children and AYA and consider
opening of new trials.
• Most available trials through COG already open
• Group addresses by consensus best treatment protocols available
13. Leukaemia and Blood Cancer New Zealand (Pru Etcheverrey) Leukaemia and Blood
• Report tabled. NB incorrect version circulated prior to meeting. Correct version now
embedded.
• NZCR – concerns with accurate collection of haematological data. Work to be done on
developing guidelines for dataset to improve consistency and quality of information.
• WHO reworking diagnostic criteria – final version due in 2016
• Key focus on health literacy – new website launched which will enable Leukaemia and
Blood to layer information resources and provide patients with information in multiple
formats – objective is to improve both access and understanding.
14. Child Cancer Foundation (Robyn Kiddle)
• Report tabled.
CCF
• CCF undergoing a process of refocusing to improve shared understanding of what we do
and how we do it at the different stages of diagnosis and treatment - mapping the
journey project – objective is to improve consistency and equitable access across
services. Journey mapping will form basis of framework.
• Next stage of process is to organize the elements of journey into quantifiable, discrete
projects that provide tangible programmes for supporters to engage with.
• Strategic plan is being presented to the Board on 21/11 for sign off.
• Multiple changes in Christchurch team with the loss of experienced people.
Considerable workload supporting this process.
• Discussion regarding CCF’s classification of data in reporting, particularly around use of
‘Neuro’.
• Scott to work with Robyn on alternative approach to classifying information.
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15. Educational Support (Robyn Kiddle)
• CCF has undertaken preliminary work on a project to improve educational support
available to families.
• Objective is to ensure funding that is currently being awarded to families as scholarships
for educational needs, is being used efficiently and effectively to meet families’ needs.
• Process to date has involved consultation with wide range of participants in educational
support – Health School, MOH, L&B etc and documentation of resources and support
that is currently available.
• Feedback to date suggests that families desire a more co-ordinated, holistic approach to
support in this area. There is currently a lack of understanding across the different
groups involved regarding each other’s roles and gaps.
• Agreement reached to establish subgroup within the psychosocial working group to
progress this project.
• Agreement reached to extend age range and consider AYA population within project.
• Melissa to meet with Robyn and organize initial meeting.
16. CanTeen (Bruce Pilbrow)
• Bruce Pilbrow has been in the CEO role for 4 months.
• Large number of issues to work through – financial deficit, organizational fit, range of
services etc.
• Bruce has been focusing on who is CanTeen serving, what is the target market.
• 13-24 year olds are a unique market, with 15+ presenting the most challenges.
• CanTeen has a significant role to play from an advocacy point of view to build strong
• Want to position CanTeen in a more professional space – build brand beyond bandanas
and camps.
• Support for teenage offspring of parents with cancer is an area that needs to be
addressed. Estimate 2,500 young people a year who are affected by cancer in this way.
• Looking at refocus for the build – external focus – supporting strong leadership team.
• A lot of work already underway to put systems in place that enable CanTeen to know
who they are talking to, how they count money and where money is coming from.
• 3 new databases in place – will provide useful outcomes based data that enables us to
look more closely at what services we are delivering to which groups of young people –
currently possible that some high needs patient are not having their needs met because
CanTeen is over servicing lower needs patients. Building a greater understanding of
what needs are will enable resources to be targeted more appropriately.
• Individual bank accounts from 16 different regions have been aligned to simplify and
improve accounting and budgeting etc.
• Work to be done on understanding donors and turning CanTeen into a profit
organization – this is a space where there are no other competitors and there is
significant opportunity to create revenue in the corporate space.
• Significant challenge is how to create awareness in this space for digital natives without
scaring people.
• First response after diagnosis is for young people to feel alone – want to create a
movement type mentality through communities that support young people going
through cancer.
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Advocacy – complex issues facing 16 year old with cancer – CanTeen have been too
quiet for too long and will be more active in their advocacy role.
17. AYA Cancer Network Aotearoa (Heidi Watson)
• AYA Cancer Network Work Programme has been signed off at advisory group last week
• The development of a National Strategy for AYA Cancer Care involves a number of
different streams of work.
• Proposing model of care – high priorities areas want to look at: identified in 2013 report.
Key pieces of work to inform strategy include:
- Establishment of the Network itself – infrastructure, communications,
awareness raising, visibility at conferences and in all relevant forums,
stakeholder visits etc.
- Development of standards of care led by Tristan Pettit. These will sit alongside
other 11 tumour streams and will define the level of care all AYAs should
receive. Working Group has been established and expecting first draft to go to
Advisory Group in few weeks. Public consultation will take place in Feb/March
2016.
- At the same time work is commencing on developing a framework to enable the
monitoring and evaluation of the standards. This will involve a baseline review
towards the end of 2016.
- More information gap analysis is required to answer disparity questions.
- Heidi is undertaking a review of international service configuration to consider
how it applies in the New Zealand context.
- Workforce development strategy – looking to establish workforce advisory
group. AYA Cancer practicum offered at Auckland University next year with
scholarships provided by CanTeen. Currently 6 keyworkers around country. They
have a large impact on service delivery at a local level and are integral to the
development of services. We need to put measures and systems in place to look
after these people and address professional development, supervision,
isolation, national consistency etc.
- Research – clinical trials pivotal to improvement of outcomes – looking at
establishing national research advisory group – may sit under body of some type
– will look at co-ordination and leadership of research. Currently many pockets
of research with no collective knowledge of what is underway or planned. Will
also be looking at how to improve access to and availability of clinical trials.
- Consideration underway regarding need for own data set – working group will
be established to look at what data is required.
- Network wants to develop strong relationships with consumers – working with
CanTeen to consider what that might look like – youth advocacy group. Need to
move away from whole lot of health professionals and 1 young person. Want
cohort of young people that we can have regular discussion with. Don’t just
want to audit standards from providers point of view want to include
perspective of consumers.
- End of life care and early detection of cancer have also been adopted as two
additional key priority areas.
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Jo Esplin Presentation
Counselling Workshop
18. Counselling Stakeholder Project (Jo Esplin & Melissa Wilson)
• Research has been completed – findings presented by Jo Esplin – see attached report.
• A workshop is planned for 10 December to develop detailed work plan to establish pilot
programme.
Starship Website and
NCCN Guidelines
19. Supportive Care Guidelines and Starship Website
• Research has been completed – findings presented by Jo Esplin – see attached report.
• Presentation from Susan Cato-Symonds regarding recent updates to starship website
and NCCN national supportive care guidelines. See attached presentation.
20. Starship Update (Lochie Teague)
Starship Update
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Report tabled.
Melissa to follow up certificates for attendees at Updates
21. CHOC Update (Amanda Lyver)
• Report tabled.
CHOC Update
22. MOH (Sarah Eames)
• Consultation is currently underway on the New Zealand Health Strategy. Feedback can
be provided up until 4 December 2015. Visit MOH website to view.
23. Consumer Engagement (Melissa Wilson)
Consumer
Engagement
• Report tabled.
• Agreement reached on following recommendations:
i.
The Reference Group adopt a guiding principle that is committed to using the
experience, expertise and insight of patients and their families and whānau to
improve care the design, delivery, monitoring and review of care.
ii.
NCCN review their key communications, planning documents and Reference
Group Terms of Reference to reflect this commitment to consumer
engagement.
iii.
NCCN working groups review their Terms of Reference to reflect this
commitment to consumer engagement.
iv.
NCCN operational team provide ongoing advice and practical support to
Working Groups to facilitate effective engagement with consumers as
appropriate.
v.
NCCN operational team report back to the Reference Group in twelve months
on consumer engagement activities and initiatives.
• Melissa and Scott to review key communications and TORs to reflect agreements
regarding consumer engagement.
24. MRI Scans with Gadolinium
• A family has requested referral to starship radiology to discuss the recent warning about
gadolinium by the FDA.
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Shows the degree of sophistication of families
Anxiety being created without any knowledge of level of risk – difficult to educate
families on risk:benefit with a nationally agreed position.
Agreement to form small temporary work group – under Protocols Work Group - to
develop statement to provide to families who are receiving Gadolinium.
Scott to organize initial working group meeting in order to develop national
statement.
Shared Care Centre Survey
• Melissa and Scott planning to conduct brief survey of shared care centres to collect
definitive information regarding capability of regional centres.
• Objective is to provide specialist centres with summary of information so that they can
consider closest to home options when determining where follow up etc takes place.
Seeking to reduce unnecessary travel for families and intra-district flows for DHBs.
• Melissa to circulate survey questions for input by Reference Group.
Next Meetings
• Friday 8 April 2016
• Friday 18 November 2016
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