Research partnerships in a project assessing the role of treatments used for women with cervical can

1
Research partnerships in a project assessing the
role of treatments used for women with cervical
cancer

• A systematic review and meta-analysis of
  individual patient data
• Claire Vale, Jayne Tierney
• Meta-analysis Group

2
Why do we need to do systematic reviews?

• Even randomised controlled trials dont always
  give clear answers
• Small differences difficult to spot
• May need many hundreds of patients
• Randomised controlled trials might give different
  answers from each other
• Important to look at all of them
• Consider all of the evidence

3
What are systematic reviews and meta-analyses?

• Combining information from all the trials might
  give a clearer answer
• Gather together all relevant trials (a
  systematic review)
• Fit all of their results together (a
  meta-analysis)
• Often (e.g. Cochrane systematic reviews) rely on
  information given in the reports of trials
• Can be limited

4
Example data from a trial report
5
What is a systematic review and meta-analyses of
IPD?

• First look for and gather all of the trials
  (systematic review) published and unpublished
• Instead of using information from the reports we
• ask each investigator to provide up-to-date
  information on each patient who took part
• collect, check and re-analyse the data supplied
  (meta-analysis)
• present results at collaborators meeting
• present and report results in the name of the
  collaborative group

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Example individual patient data

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What is this IPD meta-analysis about?

• IPD meta-analysis to compare
• radiotherapy alone
• chemotherapy given with radiotherapy
  (chemoradiation)
• in the treatment of women with cervical cancer
• Chemoradiation is already standard care in many
  countries
• BUT some important questions unanswered

8
What will this project add?

• Answer additional questions, e.g.
• Do all types of women get the same benefit from
  chemoradiation?
• Do different doses or durations of treatment give
  similar effects?
• What are the side-effects of treatment?
• Use all the evidence 28 trials, gt5000 women
• A more reliable estimate of treatment effect
• Up-to-date information (long-term picture)
• Allow women and their doctors to make more
  informed treatment choices

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Why involve women with cervical cancer?

• To ensure we
• Think about important issues
• Interpret the results appropriately
• Disseminate the results to women affected by
  cervical cancer
• And give them the opportunity to
• Learn more about research process
• Make an active contribution
• Take up opportunities for training
• Help us to improve our research

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IPD meta-analysis timescale
Sept 2004
Apr 2005
May 2006
? 2007
Invite participation Data collection Data
checking
Plan Collaborators meeting Check all data Do
first analyses
Finalise results Write findings Disseminate
Collaborators meeting
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Potential areas of involvement for partners

• 4 main areas
• 1. Development
• 2. Data collection and analyses
• 3. Prepare for the Collaborators Meeting
• 4. Write up and disseminate the findings
• Variety of tasks within each of these
• Chance for research partners to be involved
• As much or as little as happy to do

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Enlisting help from Experts

• First we set up a Reference group
• Bec Hanley (TwoCan Associates)
• Pamela Morton (Director, Jos Trust)
• Tony Stephens (NCRN Consumer Liaison lead)
• David Wright (Macmillan Fellow, Southampton)
• Karen Handscomb (Gyn cancer specialist nurse)
• Cathy Hughes (Gyn cancer specialist nurse)
• Nicolette Spera (Research Partner)

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Role of the Reference Group

• Help to recruit Research Partners
• Oversee and advise us on involvement of the
  Research Partners
• Suggest training/support needs
• Help develop training materials
• Opportunity to learn / impact on our research
• May continue working with us our future projects?

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Recruiting research partners

• Reference group helped
• Terms of Reference / Job description
• Leaflets and detailed information for Research
  Partners
• Ways we tried
• 1. Reference group contacts ?
• 2. INVOLVE database ?
• 3. Macmillan CancerVOICES ?
• 4. Letters to support groups ?
• 5. Word of mouth ?

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Who are the Research Partners?

• Alison, Andrea, Jane, Nicolette and Sue
• 5 women all of whom have had cervical cancer
• 3 women had chemoradiation / 1 radiotherapy alone
  / 1 surgery alone
• 2 London /1 South-East /1 Midlands /1 North-West
• 2 previous involvement
• e.g. patient representative for cancer networks
• 1 researcher
• First meeting in April 2005
• Described project and potential areas of
  involvement

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Research Partners contributions so far

• Helped recruit other research partners
• Directly
• Input into advertisements
• Feedback and input into patient friendly
  information on project
• Help to track down contact details
• Contribute to project newsletters

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Research Partners contributions so far

• Research and plan the social event at the
  Collaborators Meeting
• Attend the Collaborators Meeting
• Comments and feedback on
• How their involvement is going
• Meetings / communication
• The Collaborators Meeting
• What we might do differently / better next time

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Next stages of the IPD meta-analysis

• Update searches to check for any new trials
• Finalise the analyses
• Interpret final results
• Present results at gynaecological oncology
  conference
• Write the paper for medical journal
• Disseminate more widely

19
Research Partners future contributions

• Help us to interpret the results
• Different priorities to the doctors?
• Identify ways to disseminate results to women
  affected by cervical cancer
• Discuss and plan with Reference Group and
  Research Partners
• Producing accessible information
• Reaching the appropriate audiences

20
Research Partners future contributions

• Report back to the Reference Group
• Suggest other things we might do / areas youd
  like to be involved in
• Write up / publish experiences of partnership
• Training workshops / seminars
• Present to women affected by cervical cancer

21
Feedback from the Research Partners

• Information on the project
• pitched at the right level for someone like me
  with a reasonable level of understanding about
  cervical cancer, but not about research processes
  and clinical trials
• short sentences, clear explanations and use of
  colour in highlighting key word/ideas was very
  helpful
• Could do with extra sections explaining the
  results

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Feedback from the Research Partners

• Day spent looking at the data
• Helped in understanding the project and the
  results
• Part of the general training or induction for
  research partners

23
Feedback from the Research Partners

• Meetings / communications
• Well organised and informative
• Expenses paid (in advance) and DoH payment rate
  for attendance
• But maybe plan all meetings at outset
• Hold a meeting to describe the results of
  meta-analyses
• better understanding of results when presented at
  Collaborators meeting
• Allow more time for input / comments

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Feedback from the Research Partners

• Attending the Collaborators Meeting
• Enjoyed the opportunity (privilege)
• Research Partners
• wasnt clear to the doctors who we were
• Not enough preparation
• Werent sure what to expect
• Clinical discussions a bit blunt
• Dedicated question and answer session
• Dedicated doctor that they know for support
• Seating plans

25
Feedback from the research partners

• Not sure what use they have been
• Down to us to provide better feedback

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What else we have learned

• Resources
• Financial
• Time
• Expert advice
• Researchers dont be scared!
• It can be done!

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Plans for involvement of consumers in future IPD
meta-analyses

• Involve consumers in new projects being done by
  our group
• From the earliest stage
• Include suggestions of Research Partners
• Current Research Partners as buddies or mentors
  and or part of the Reference Group
• Provide training for others to involve consumers
  in IPD meta-analysis
• Do it better!