NCRI Consumer Liaison Group Meeting

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NCRI Consumer Liaison Group Meeting

• Tuesday 16th September 2008
• London, Royal Institute of British Architects
• Welcome

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Agenda (1)

• Introductions and meeting overview-David Ardron
• Previous minutes, matters arising
• Papers from consumers
• CLG Annual report-KI
• NCRI Strategic Plan and consumer involvement
  -Jane Cope
• Consumer involvement steering group update-DA/DS
• NCRI Informatics Initiative-Julie Clifton/Stuart
  Bell
• Consumer involvement nationally and locally-DA
• Workshop/discussion
• LUNCH

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Agenda (2)

• Introduction to market stalls-DA
• Market Stalls- CRPs, ECMCs, MRC CTU, Teenage and
  Young Adult CS(D)G
• Market stalls feedback
• 2009 meeting dates
• Meeting review/AOB and close

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NCRI Consumer Liaison Group Meeting

• Previous minutes
• Matters arising

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NCRI Consumer Liaison Group Meeting

• Papers from consumers
• -National Cancer Survivorship Initiative
• -Research in surgical oncology, other ways of
  removing tumours
• -NCRI Board Sub-group
• -International cancer research partners
• -Project Lead Training
• -Clinical Trials Awards and Advisory Committee

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Cancer Reform StrategySurvivorship

• Roger Wilson

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Cancer in the UK in 2008

• 2 million cancer survivors in UK at the end of
  2008
• 300,000 new cases of cancer in UK in 20081
• 150,000 cancer deaths in UK in 20081
• 10 of those aged 65 are cancer survivors
• The number of cancer survivors is increasing by
  3.2 each year

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National Cancer Survivorship Initiative
Steering/Advisory Group Chaired by Prof Mike
Richards and Ciaran Devane
Management and executive team from NHS
Improvement, Macmillan and Cancer Action Team
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Test Communities

• Bottom up networks, PCTs and Trusts
• Local testing of new models, innovative
  approaches etc
• Variously include charities, support groups,
  local authorities
• Resources from NHS Improvement
• Evaluation built in efficacy and
  cost-effectiveness

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Workstreams to test models of care
Managing active progressive disease
Children young people
Assessment care planning
Late effects
Cross-cutting themes (Information/workforce/
commissioning)
Self management
Work and finance
Research
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The three Adult work streams . . .

• Assessment and Care Planning
• What is my care plan ? Can I see it ?
• What medical, emotional, financial, and practical
  support can I expect ?
• Managing Active, Progressive, Recurrent Disease
• I might have an aggressive cancer but life is for
  living. How can you
  help?
• Late Effects of Treatment
• I am not sick, but I am not well either! My
  treatment is causing me problems. Help me.

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. . . four Specialist streams

• Adolescent and Young Adult Cancer
• How can I catch up on my schooling and improve my
  ability to learn?
• Work and Finance
• I am too sick to work and my partner is looking
  after me. Will I lose the house ?
• Self Help
• What can I do to look after myself ?
• Research
• What dont we know that we should know ?

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Further information athttp//www.improvement.nhs
.uk/cancer/survivorship.html
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Surgical oncology and other ways of destroying
tumours

• Roger Wilson

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(No Transcript)
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Removing tumours

• SURGERY
• Laporoscopy
• VATS
• Robots
• ILP
• Hyperthermia

• OTHER TECHNOLOGY
• RFA
• Gamma Knife
• HIFU
• Proton beam
• Cyberknife

• Intra-operative radiotherapy

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Laporoscopic surgery for bowel cancer

• NICE approved in 2006
• DH issued implementation waiver
• Fewer than 10 of surgeons trained according to
  CRS (2007)
• Given priority by Cancer Reform Strategy

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VATS

• Video assisted thoracic surgery
• Minimally invasive
• Limited by tumour size and number of tumours
• Most cardio-thoracic specialist centres now have
  this technology

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Robotic Surgery

• Minimally invasive
• Gives surgeon full view and greater dexterity
  (also eliminates hand tremor)
• Surgeon in same room (usually)
• Mostly used for prostate
• Becoming more widely available

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Isolated limb perfusion (ILP)

• First used in 1950s
• Suitable for sarcomas and melanomas on limbs
• Isolate blood system in limb then infuse with HD
  chemotherapy (Melphalan)
• Tumour reduction followed by surgery
• One UK centre (Marsden) but limited use

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Hyperthermia

• Using heat (100F) to kill tumours
• Follow up can be radiotherapy or surgery
• Several trials in Germany with positive results
• Not available in UK

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Intra-operative radiotherapy

• Single dose radiotherapy during surgery
• Replaces adjuvant radiotherapy
• International TARGIT trial underway

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Radio Frequency Ablation

• Approved by NICE
• Minimally invasive
• Liver, lung and kidney tumours inc mets
• Microwaves delivered by fine probe, CT or
  ultra-sound guided
• Few radiologists trained but UCLH has an
  educational fund

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Gamma Knife

• Also called stereotactic radiosurgery
• Focussed radiation from a ring of cobalt sources
• Used for treatment of brain tumours
• Well proven
• Two in NHS (Barts and Sheffield) one private
  (Cromwell)

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High intensity focussed ultra-sound (HIFU)

• Acoustic wave converts to heat at point of focus
  - ultra-sound guided
• Tissue through which sound waves pass does not
  suffer cumulative damage
• Now several in NHS plus a mobile plus some
  private
• Approved for prostate
• Also successful liver and kidney trials

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Proton beam

• Large-particle radiation very focussed -
  minimal damage to surrounding tissue
• One in UK Clatterbridge
• Licensed for eye tumours (adult and paediatric)
• NCG will commission from France/Germany for
  exceptional cases

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Cyberknife

• Small linac manoeuvred by robot
• Real-time x-ray camera to compare planned
  procedure with live images
• Approach tumour from multiple angles
• Can treat motile tumours eg. lung and pancreas
• One planned in UK (not NHS) four so far in
  Europe and one in Turkey

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What can we do ?

• Find out about new technology relevant to our CSG
  ?
• Ask the surgical questions NCRI Strategy gives
  a good reason to ask
• Ask the 'other technology' questions
• Do we as CLG need to find out more collectively ?

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NCRI Consumer Liaison Group Meeting

• CLG Annual Report
• -outlines main activities/achievements
• -on NCRN website
• informs future reporting for
• -CSG progress reviews-CLG 2009
• -NCRN annual report
• -NCRN Co-ordinating Centre review, 2009

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Implementing the NCRI Strategic Plan 2008-2013

• Presentation to the NCRI Consumer Liaison Group
• 16 September 2008

Jane Cope, Administrative Director, NCRI
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(No Transcript)
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Major new initiatives

• Alignment with Cancer Reform Strategy for
  England
• National Awareness and Early Diagnosis Initiative
• National Cancer Survivorship Initiative
• National Cancer Equality Initiative

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National Awareness Early Diagnosis
Initiative(NAEDI)

• CR-UK lead partner for NHS and NCRI
• Workstreams
• Review of evidence base
• Measuring symptom awareness and undertaking
  surveys
• Interventions to promote early presentation
• Understanding the nature of primary care delay
• International benchmarking of outcomes
• Research to fill gaps in the knowledge base
• Key messages for individual cancers
• Launch event 21 November

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NAEDI research workstream

• Areas for consideration
• Understanding symptom awareness health
  behaviours
• GP decision-making tools
• Risk stratification
• System delays in secondary care
• Care pathways/referral patterns
• Biomarkers for primary diagnosis/screening
• Prostate
• Lung
• Others
• Biomarkers of recurrence
• Rarer cancers/children young people
• Knowledge gaps identified in other workstreams
• Coordination

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National Cancer Survivorship Initiative

• Macmillan Cancer Support lead partner for NHS
  NCRI
• Workstreams
• Assessment care planning
• Managing active/progressive disease
• Late effects of treatment (initially
  radiotherapy)
• Children Young people
• Work Finance
• Self Management
• Research
• Launch event 11 September

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Survivorship research workstream

• Research needs identified at the Think Tank
  meeting
• Prevalence modelling done (Thames Cancer
  Registry)
• Linking GPRD, HES cancer registry data - NCIN
• Cohort/natural history studies for individual
  cancers
• Literature review in hand (Macmillan)
• Methodology for evaluating new service models

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National Cancer Equality Initiative

• Will tackle inequalities of socio-economic
  status, ethnicity, gender, age, disability, etc
• Initial focus
• Optimising data collection to enhance our
  understanding of the inequalities that exist
• Promoting research to fill gaps in the evidence
• Spreading best practice

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Radiotherapy Radiobiology

• First review published 2003
• Oxford initiative ACORRN
• Rapid review April 2008 to update priorities
• Need for senior leadership and more strategic
  approach
• Lack of NHS infrastructure in physics
  radiography
• Report and actions to be published Autumn 2008

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NCRI Partners
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NCRI Consumer Liaison Group Meeting

• Consumer Involvement Steering Group update
• 1st meeting 29th September
• Membership/rotation
• Meeting x3/yr
• Wider reference group
• Reporting and feedback

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NCRI Informatics InitiativeUpdate to the
Consumer Liaison Group September 2008

• Julie Clifton Consumer Board Member
• Stuart Bell Section Head, Community Alliances
• Abi Ajose-Adeogun Scientific Programme Manager

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Purpose

• Information to tell the CLG what the informatics
  programme is trying to do
• Discussion to think about ways in which
  consumers can influence the way that
  information is used
• Action to encourage individual consumer
  members to get involved

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What is Informatics?

• The process of collecting, managing and sharing
  information, not just computers, but all of the
  people and processes involved.
• Information used for treatment, planning,
  management and research, to improve healthcare
• Governments, industry and research charities are
  devoting a lot of time and effort to developing
  informatics systems that will allow the data they
  collect to be used to its full potential.

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The scale of the information

• Includes data generated
• in the lab
• during trials of new drugs
• from studies about the health of an entire
  population.
• Every year around 250,000 patients are involved
  in Phase I, II and III trials. This includes
• industry and charity-sponsored studies
• treatment strategy studies
• not just new drug therapies
• If we assume that those patients give at least
  150 individual data elements then every year
  were dealing with about 37,500,000 individual
  data items
• There are hundreds of individual research
  projects running concurrently.
• The NHS employs some 17,000 informaticians! And
  thats only one of the twenty NCRI funders

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Where does Informatics fit in with NCRIs
governance?
Consumer Liaison Group Chair David Ardron
Julie Clifton sits on the IMB to ensure that
there is an opportunity for the views of patients
to be considered in our approach
There is also consumer representation at the NCRI
Board level
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Informatics Coordination Unit

• Established in 2003
• Aim To enable and support the sharing of data
  within the cancer research community
• Approach
• Provide scientists with the means to share their
  data
• Facilitate the cultural change required to enable
  data sharing
• Ultimate Goal To ensure that data is more
  accessible and can be used to the maximum extent
  possible to improve the understanding,
  diagnosis, prevention and treatment of cancer

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NCRI Informatics Coordination Unit Our approach
to enabling data sharing
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NCRI Informatics Coordination UnitOur approach
to enabling data sharing - specific examples

• Facilitating a cultural change
• Addressing the issues through
• Workshops
• Our annual conference
• Scientific publications
• Forming Advisory Groups
• Participation in community events
• Encouraging participation in relevant
  consultations eg tissue banking survey
• Demonstrator Projects
• Encouraging processes that facilitate data
  sharing
• Generation of well described data
• Data annotated with standard vocabulary
• Internationally compatible data formats
• Development of data sharing policies
• Introduction of data sharing agreements

• Providing the means to share
• Creating a web-based tool that will make it easy
  to discover cancer-related data and resources
  (Informatics Platform)
• Access to both national and international data
  will be possible

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Progress to Date

• Strategic alliances have been formed with key
  international partners EBI (Europe) and NCI
  (US)
• New policies to encourage and support data
  sharing have been introduced
• Our demonstrator projects have successfully shown
  the benefits of data sharing and integration
• Creation of early prototypes of ONIX have
  provided some insight into what could be achieved
  and allowed feedback from the cancer research
  community
• The establishment of multidisciplinary groups to
  guide progress (eg Task Force, Scientific and
  Technical Advisory Panel, User Group)

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What can consumers do?

• Raise issues at CLGs
• Comment on proposals
• A sub group?
• Enquire when meeting researchers/funders if they
  are sharing their data?
• Encourage patients to consider giving consent for
  their data to be shared for research purposes
• A workshop/introductory talk that covers the
  basics of informatics?
• Publicise web site and data-sharing system

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Thank You
Get more information from http//www.cancerinform
atics.org.uk/ Contact me on julie.clifton_at_ncri.or
g.uk
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NCRI Consumer Liaison Group Meeting

• Consumer Involvement
• Local and National
• David Ardron.
• 16th September 2008

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What Needs To Be Done?
The North Trent Cancer Research NetworkConsumer
Research Panel

• Why do patients and carers get involved?
• How do patients and carers get involved?
• How can we do more?
• Where are the gaps?
• Information
• Services
• Research (c.300 NCRN and c.300 UKCRN trials in
  set up or recruiting)

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What Kind of Research Can Patients and Carers DO?

• identifying topics to be researched
• prioritising topics to be researched
• commissioning research
• research design
• managing research
• collecting data
• analysing research findings
• interpreting research findings
• disseminating research
• determining the usefulness of research findings
• implementing research findings

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What do we need in place to ensure that Patients
and Carers can have a consistent input to the
Research Process?
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Clinical Visionary
Patients Carers
Good Practice
Academic Support
Clerical Support
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A Brief Introduction
The North Trent Cancer Research NetworkConsumer
Research Panel

• Founded 2001
• Funded by North Trent Cancer Research Network
  c.11,000 p.a.
• 30 members carers, current and former patients
  with experience of many tumour types
• Role to provide a consumer perspective at all
  stages of the research process
• Part time paid facilitator and secretary

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Putting it into practice

• 1. Regular quarterly meetings.
• 2. Local Studies
• 3. International Trials
• 4. Members Directory and Design Work including
  Newsletter and Web site work.
• 5. Conference Planning and Attending
• 6. User Driven Research
• 7. NCRI CLG and CSG and SPG work
• 8. Clinical Trials Executive
• 9. Partnership Group

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The Southampton Model
The UoS CTU Operational Strategy Group
The UoS CTU Consumer Working Group
The CTU Trial Management Groups
The Local Consumer Research Panel
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The Stirling Model
The Cancer Care Research Centre
Stirling University User Group
West of Scotland User Groups
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Where do we go from here?

• The problem of supply and demand.
• Importance of training and group identity.
• Continue to respond to requests for input to
  research projects.
• Help establish new panels. A Macmillan Project?
• UKCRC and MRC. CTUs and ECMCs
• User led (or driven) research? Trent RDSU.
• Spread the word within the research community.
• Recruit new members
• Educational role (web, conference, newsletter)

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What ways can you contribute more to this
movement? How can we start a process of
involvement in your locality?What will the
Mevagissey model look like?
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Thank yous

• Academic Unit of Supportive Care
• Sam Ahmedzai
• Tony Stevens and Karen Collins
• Sue Button
• North Trent Cancer Research Network
• Rob Coleman and Lesley Bruce, Kim Fell
• NCRI and NCRN

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Any questions?

• Website address www.ntcrp.org.uk
• daveardron_at_aol.com
• Panel Facilitator
• Dr. Karen Collins,
• E mail k.collins_at_shu.ac.uk
• jill.thompson_at_sheffield.ac.uk

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NCRI Consumer Liaison Group Meeting

• LUNCH
• Meet back here after lunch for introduction to
  Market Stalls

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NCRI Consumer Liaison Group Meeting

• Market Stalls
• Opportunity for research staff and consumers from
  each area to
• -Provide an outline of their current/planned
  activities
• -Share relevant publications, reports
• -Discuss areas where consumers are or could
  become involved in their work

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NCRI Consumer Liaison Group Meeting

• Market stall groups
• Consumer Research Panel-North Trent
• - Tracy/David Green, Jill Thompson
• Experimental Cancer Medicine Centres
• -Dr Louise Jones and colleagues
• Clinical Trials Unit-Medical Research Council-
  Lyndsey Thompson, Bec Hanley, Claire Murphy
• NCRI Clinical Studies Development Group-Teenage
  and Young Adult- Dr Lorna Fern

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NCRI Consumer Liaison Group Meeting

• Market Stalls
• Feedback of key issues

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NCRI Consumer Liaison Group Meeting

• 2009 meeting dates
• Tuesday 27th January-joint meeting with Bart's
  ECMC, London
• Wednesday 24th June, Goodenough College, London
  (Annual meeting)
• Tuesday 22nd September, Leeds Town Hall

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NCRI Consumer Liaison Group Meeting

• Review of meeting
• Any other business
• Meeting Close
• Thanks for attending