Living with Cancer Program — VCCC cancer patient experience

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Victorian Comprehensive Cancer Centre
Newsletter Autumn 2013
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In this issue
Chairman and Executive Director’s message ................................................................................. 3
Research Finds Cancer Cures ........................................................................................................ 5
Building a Centre for Excellence in Cancer Education and Training ................................................. 6
Building a Centre of Excellence in Cancer Research ....................................................................... 8
Building a Centre of Excellence in Clinical Care .............................................................................. 9
VCCC industry strategic engagement plan ................................................................................... 11
Living with Cancer Program — VCCC cancer patient experience survey ........................................ 12
IM & ICT progress ...................................................................................................................... 13
Project update ........................................................................................................................... 13
Upcoming events ....................................................................................................................... 16
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Chairman and Executive Director’s message
Professor Richard Larkins AO (Chairman)
Professor Jim Bishop AO (Executive Director)
The Victorian Comprehensive Cancer Centre (VCCC) has developed a number of baseline
measures to monitor progress against our strategic plan to accelerate the improvement in
cancer outcomes in Victoria.
Living with Cancer Program
Under the Living with Cancer Program, we have initiated a cancer patient experience survey
to track progress in future years. The survey is based on that used in the United Kingdom
(UK) and will allow us to benchmark against the UK as a whole, and against UK institutions
specifically. The study on patient reported outcome measures will also enable benchmarking
and document patient quality of life.
Leaders in Cancer
The agreed VCCC strategy to develop, retain and recruit Leaders in Cancer to the centre is
well underway. Progress so far in the Leaders in Cancer Program includes:
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Professor Jim Bishop was appointed as Herman Chair of Cancer Medicine, The University
of Melbourne
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Professor Jon Emery, in an Australian first, was appointed the Herman Chair of Primary
Care Cancer Research to Western Health, VCCC and The University of Melbourne
•
Professor Graham Taylor was appointed as the new Chair of Medical Genomics, The
University of Melbourne
•
the Metcalf Chair of Leukaemia Research was established
•
the Lorenzo Galli Chair of Melanoma and Skin Cancer was established
•
the Julie Borschmann Fellowship in Myeloma was established
•
four Herman Clinical Research Fellowships were offered
•
academic recruitment for molecular epidemiology is underway
•
the Herman Chair in Health Services Research is being developed
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chairs in palliative care, surgery and cancer nursing are being developed.
Excellence in Cancer Research, Clinical Care and Education
Under the three program areas — Building a Centre for Excellence in Cancer in Research,
Clinical Care and Education — the VCCC has audited clinical activity, research performance
and education activity to complete a series of baseline measures. The latest research census
has captured activity from the past two years that will enable researchers to understand
their own strengths, where key collaborations can develop and what capabilities should be
built.
The impact of research was examined through a publications analysis of all the world’s
cancer publications from 2006 to 2012. On average, the VCCC ranked 17th in the world for
publication impact, but 6th in the world for the number of top 10% publications by impact.
A clinical audit has reported on about 1.7 million occasions of care for 110 000 patients with
cancer in the past five years from VCCC member hospitals. Analyses on cancer types, their
distribution and costs will be completed shortly. Preliminary data shows areas of strength in
most types of cancer, including lymphoma, head and neck cancer, brain tumours, bowel
cancer and sarcomas. This audit is being used to identify cost-effective models of care and to
inform service planning by providing a full understanding of cancer-patient distribution and
services capability. In addition, we have started a project of key reforms to increase accrual
rates on clinical trials. It has been agreed there will be a new call for those needing funding
to support the establishment of tumour-specific symposia.
Change management
The VCCC Change Management Committee is currently developing a series of steps to
prepare staff for the proposed changes involved in the move to the new facility and other
activities of the VCCC. A new Change Management Committee, under the Department of
Health Project Steering Committee, has been formed and is chaired by Professor Robert
Thomas.
Professor Richard Larkins AO
VCCC Board Chair
Professor Jim Bishop AO
Executive Director
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Research Finds Cancer Cures
At the recent VCCC Board meeting, chief executive officers of the alliance members agreed
to a joint positioning approach focusing on research to highlight the VCCC’s collaborative
vision.
A billboard showing the new message — Research Finds Cancer Cures — was erected in midMay at the Project site and promotes research across the VCCC. The message positions the
campus and the broader alliance as leaders in cancer research and is a key mission for the
VCCC.
‘The Research Finds Cancer Cures message epitomises the philosophy of the partnership of
organisations making up the Victorian Comprehensive Cancer Centre’, says Professor Bishop,
VCCC Executive Director. ‘Passing traffic will be exposed to this aspirational key message at
the VCCC Project site, reflecting the collaborative work that is already underway across the
alliance’.
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Building a Centre for Excellence in Cancer
Education and Training
Excellence in Cancer Research
The VCCC, together with the Picchi Brothers Foundation, held a ceremony on 13 March 2013
at University House @ Woodward to recognise the recipient of the inaugural Picchi Award
for Excellence in Cancer Research and the VCCC Student Career Development Awards.
Recipients of the VCCC career development awards included Annette Lim (Peter MacCallum
Cancer Centre), Anna Boltong (Peter MacCallum Cancer Centre), Connie Duong (Peter
MacCallum Cancer Centre), Nikhil Sapre (Royal Melbourne Hospital) and Lorey Smith (Peter
MacCallum Cancer Centre).
Dr Aung Ko Win from the Melbourne School of Population Health was awarded the top
prize, the Picchi Award for Excellence in Cancer Research. During the event, Picchi Brothers
Foundation Board members, clinicians, supervisors, researchers and students gathered to
hear Dr Win present a summary of his research findings on developing a prediction model
for colorectal cancer, a disease in which different genetic mutations are responsible for the
development of different cancer subtypes in various regions of the bowel.
After completing his medical degree in Burma, Dr Win studied a Masters of Public Health at
The University of Melbourne before starting his PhD. As a young researcher, he has already
made a substantial contribution to knowledge in his field — knowledge that has the ability
for immediate translation into clinical practice. His work provides the best evidence to date
that breast cancer is a part of Lynch syndrome, and he has provided the first authoritative
evidence that noncarriers of mutations in families with Lynch syndrome do not have an
increased risk of bowel cancer, allowing doctors to release these individuals safely from
costly and invasive colonoscopy.
Dr Win’s PhD supervisor, Associate Professor Mark Jenkins, said, ‘In my many years of
academic research, never before have I had the good fortune to witness someone as
productive and of such promise this early in his or her career.
‘Because of his work, eminent cancer and genetics researchers at internationally renowned
institutions now see The University of Melbourne’s Centre for Molecular, Environmental,
Genetic and Analytical Epidemiology as being a world-class contributor to epidemiological
research into the genetics of cancer.
‘He has answered a clinically difficult question in colon cancer research, in providing
information that carriers of the MUTYH gene mutation inherited from one parent are at
increased risk of bowel cancer’.
All recipients will use their award funds to travel, so they can present their doctoral research
findings to the international scientific and clinical communities in 2013.
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Caption: Recipients of the VCCC career development awards included Lorey Smith (Peter
MacCallum Cancer Centre), Connie Duong (Peter Mac), Annette Lim (Peter Mac), Anna Boltong
(Peter Mac), Aung Ko Win (University of Melbourne), Nikhil Sapre (in absentia)
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Building a Centre of Excellence in Cancer Research
Research census update
The 2013 electronic research census opened to researchers in March. A number of
researchers completed the census early and gave excellent feedback that enabled the e-tool
to be improved significantly, benefitting all groups that had not yet completed the online
census. After a short period of reprogramming during which the census was closed, the etool reopened for a further two weeks to allow completion.
Additional changes will be made so that any future census will be more user friendly.
Although it has taken a fair amount of effort for each group to complete, the data will be
stored so that basic information will not need to be re-entered. The information is also used
to report to government on VCCC key performance indicators, and to form the basis for
program development and external funding submissions. For example, the last census
indicated that nearly three-quarters of the VCCC organisations’ cancer income came from
government sources (see graph). The census information also enables us to identify the
types of sources that are not being used adequately, such as commercial and philanthropic
funding sources.
Researchers indicated that there were areas in which they lacked expertise and/or access to
infrastructure. We acknowledged those areas and are currently building on them to improve
the conditions for all VCCC researchers.
Why do a research census?
The results of the previous census showed the significant contribution that the VCCC
member organisations make to the cancer control effort across Australia and around the
world. Each organisation will receive its own data back in a comprehensive report to share
with all staff. The information collected will become a useful tool for all researchers and can
be used in grant writing to demonstrate the strength of the VCCC alliance, as well as in
setting up specialist groups in tumour streams or disciplines.
For any VCCC research census queries please contact Rebecca Lennon, VCCC Project
Manager, via email rlennon@unimelb.edu.au or telephone (03) 9035 4677.
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Building a Centre of Excellence in Clinical Care
VCCC clinical audit — field work
Important information on cancer outpatient data, patient flows, referral patterns and
multidiscipline team meetings will form the basis of additional work on the VCCC clinical
audit. Our summer 2012–13 newsletter contained a story about the audit undertaken by
Professor Danny Liew and his team. In addition to that analysis of the administrative data,
which largely captured inpatient information, Healthcare Management Advisors (HMA) will
soon be on the ground in the six VCCC clinical organisations: Peter MacCallum Cancer
Centre, Melbourne Health (including The Royal Melbourne Hospital), The Royal Women’s
Hospital, The Royal Children’s Hospital, Western Health and St Vincent’s Hospital
Melbourne. This group have been tasked with filling some of the gaps in the administrative
data.
Building an integrated cancer service begins with understanding patient demographics and
the environment in which patients are treated. The information collected will be used to
map, in detail, all clinical activity across the VCCC, which no other organisation or alliance of
organisations has seen before. The data will form the basis for future cancer planning across
the VCCC and guide decisions on cancer programs that benefit all of the VCCC members. It
will also be provided back to each organisation to use in building capacity and strengthening
gap areas that are currently unidentified.
HMA will soon contact the people at each VCCC member organisation who have first-hand
information, particularly with regard to outpatient activity.
If you consider yourself to be the holder of important information that can add to the body
of knowledge for your organisation and that of the VCCC as a whole and you don’t receive a
phone call or email from HMA by 21 June, please contact Fiona Macken at the VCCC via
email fiona.macken@unimelb.edu.au or telephone (03) 9035 8170 to ensure your cancer
clinical activity is included in the VCCC’s overall map.
Clinical trials consultation
The previous VCCC research census (2008–10) highlighted that infrastructure and access to
expertise was limiting researchers’ ability to expand the high-quality cancer clinical trials
program across the VCCC. In response, the VCCC’s Cancer Research Advisory Committee set
up a Clinical Trials Working Group, which commissioned Cancer Trials Australia (CTA) to
explore the issues further.
For the past eight months, the VCCC has worked closely with CTA to ensure that a wide
consultation of clinical trials staff had a say in the priority areas they wish to see improved
with regard to either supporting infrastructure or the enhancement of the existing Phase I
clinical trials program. CTA also engaged HMA to undertake part of this consultative work,
and completed approximately 100 interviews across the VCCC.
Under the VCCC’s Cancer Research Advisory Committee, the Clinical Trials Working Group
prioritised areas that will now be addressed through targeted actions.
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For further information please contact either Nathalie Johnston at CTA via email
Nathalie.Johnson@ctaust.org or telephone (03) 9342 7306, or Rebecca Lennon at the VCCC
via email rlennon@unimelb.edu.au or telephone (03) 9035 4677.
Psycho-oncology research funding
The VCCC recently conducted a new funding scheme, worth up to $100 000, in the area of
psycho-oncology research. The research supported is expected to be innovative and
evidence based, and will ultimately produce credible new evidence to move the psychooncology field forward. It is expected that this initial grant will encourage applications for
sustainable research funding in the future.
Applications were open only to VCCC member organisations, and proposals were requested
to take a collaborative approach by including as many VCCC member organisations as
possible. Furthermore, research proposals that were inclusive of multiple tumour streams
and had the potential to lead to ongoing, long-term change in psycho-oncology were viewed
as favourable. The closing date for submissions was 17 May. An expert panel is currently
evaluating the applications, and outcomes will be released in June.
For information regarding the outcomes of the psycho-oncology research funding, please
contact Fiona Macken at the VCCC on fiona.macken@unimelb.edu.au or (03) 9035 8170.
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VCCC industry strategic engagement plan
The VCCC presents the opportunity for its members to attract new sources of funding
collectively, which may not be available to the members individually. There is the potential
to expand opportunities for VCCC members to maximise the value of their partnerships with
industry by engaging collectively, while using combinations of individual member strengths
to contribute to specific projects.
The VCCC has set up a Research Business Development Steering Committee that has
identified the need for proactive promotion of specific research opportunities to companies
with relevant interests. Greg Leong, with experience working at several VCCC members, has
been engaged to draw up a strategic engagement plan for industry. During the coming
months, Greg will be engaging with VCCC research leaders, to identify research programs
common across the VCCC members where there is significant research and clinical capability
that would be attractive to potential industry partners.
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Living with Cancer Program — VCCC cancer
patient experience survey
Information from patients will be used to drive quality-improvement initiatives and better
models of clinical care following a new cancer patient experience survey conducted by the
VCCC. This quality-assurance activity is part of the VCCC’s commitment to reduce the burden
of cancer and ensure patient needs are met.
The National Health Service (NHS) in the UK kindly granted permission for the VCCC to use
their cancer patient experience questionnaire for our survey. The NHS questionnaire is
cancer specific and spans the care trajectory, from diagnosis and treatment through to
follow-up care. The questionnaire was developed with oversight from the UK Cancer
Patients Experience Advisory Group, which is co-chaired by the National Cancer Director
Professor Sir Mike Richards and Professor Jessica Corner of Macmillan Cancer Support. The
questionnaire has undergone significant cognitive testing in the UK by volunteers from
Macmillan Cancer Support, with input from a cancer advisory group.
Fieldwork for the VCCC survey started in April 2013. A questionnaire was sent to all eligible
patients who were seen between October and December 2012 for their cancer in one of the
following VCCC clinical sites: Melbourne Health, The Royal Women’s Hospital, Peter Mac,
Western Health and St Vincent’s Hospital Melbourne. It is anticipated that the results of the
survey will be published by the middle of this year. An aggregate VCCC report will be
produced, as well as bespoke reports for each of the participating hospitals. It is hoped that
the survey will be repeated on an annual basis to monitor the VCCC’s progress on improving
outcomes in cancer patient experience.
The survey has been made possible by the kind support of a dedicated working group, who
have provided expert guidance and support throughout the entire survey process.
Using patient-reported outcomes to measure cancer survivor’s quality
of life
The number of cancer survivors in Victoria is increasing, but little is known about the impact
that cancer has on the everyday lives of survivors. Such information is important, as it can be
used to inform future programs to ensure cancer survivors have a good quality of life
following treatment.
The VCCC is therefore planning to conduct a survey to assess the overall quality of life of
cancer survivors in the VCCC with different cancer types and at different time points since
diagnosis. Quality of life will be measured using patient-reported outcome measures
(PROMs). The data elicited from the surveys will also be used to assess the contribution that
demographics, and disease-related and other factors have on quality of life.
Again, the NHS has granted permission for the VCCC to use their cancer PROMs
questionnaires, which contain questions drawn from other validated quality-of-life survey
instruments. It is hoped that, in the future, the VCCC will be able to benchmark its PROMs
data with the UK and other comparable countries to understand how and why variances
may occur, and identify opportunities for improvements. It is anticipated that this survey
will be run in collaboration with the Victorian Cancer Registry later this year.
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IM & ICT progress
The VCCC Information Management (IM) and Information Communications Technology (ICT)
team has now completed an exhaustive process of reviewing key documents created during
the life of the VCCC Project. These documents included the VCCC functional brief, the
business case, technical specifications and the IM & ICT investment plan. A comprehensive
list of potential VCCC IM & ICT projects has been created. The information from both these
processes has been used to collate a list of project priorities following input from the Cancer
Information & Related Technology Steering Committee (CIRTSC) and other stakeholders,
which will form the program of work for the IM & ICT team. For information contact:
ask_ICT@victorianccc.org.au.
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Project update
The Hon. David Davis, MP (Victorian Minister for Health and Ageing) and the Hon. Tanya
Plibersek, MP (Australian Minister for Health and Ageing) recently joined cancer survivors
and people touched by cancer for a special site inspection of the new $1 billion VCCC Project
facilities.
Both ministers paid tribute to the VCCC Project consumer advisory groups who have
provided invaluable advice on the design of the cancer centre.
Members of the VCCC Project’s Consumer Strategic Advisory Group and the Consumer Design User Group
(Heather Beanland, Nicola Bruce, Paul Baden, Kylie Lewis and Diane Frew)
The VCCC Project construction continues to progress well. As can be seen from outside the
hoarding, all four tower cranes that will be used in constructing the new facility have now
been erected. Also visible from outside is one of the two elevator cores that will form part of
the new facility. This core will climb to level seven. The second one (which is not visible from
outside the site yet) will climb up to level fourteen.
A tower crane will be erected on the north side in June, and structural steel works will start
shortly thereafter.
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Upcoming events
The inaugural Victorian Psycho-Oncology Conference: Implementing Effective PsychoOncology Interventions into Usual Care will be held on 14 June 2013. Contact Karen Lacey at
karen.lacey@unimelb.edu.au.
Victorian Comprehensive Cancer Centre Ovarian Cancer Symposium August 5–7, 2013. Early
bird registration and abstract submissions close 28 June 2013, regular registration closes
12 July 2013. Contact Karen Goulding at karen.goulding@thewomens.org.au
Contact us
Victorian Comprehensive Cancer Centre
PO Box 2148, Royal Melbourne Hospital, Vic 3050
Level 3, 766 Elizabeth St, Melbourne, Vic 3000
telephone: +61 3 8344 8708 email: victorianccc-info@unimelb.edu.au
Victorian Comprehensive Cancer Centre Ltd trading as Victorian Comprehensive Cancer
Centre
The Victorian Comprehensive Cancer Centre, a joint venture between:
Peter Mac
Melbourne Health
The University of Melbourne
The Royal Women’s Hospital
Walter & Eliza Hall Institute of Medical Research
The Royal Children’s Hospital Melbourne
Western Health
St Vincent’s Hospital Melbourne
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