We listen to patients: how a charity is taking forward research that people affected by cancer want

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We listen to patientshow a charity is taking
forward research that people affected by cancer
want

• Jim Elliott
• Research Adviser
• Macmillan Cancer Support
• Christine Allmark,
• Research Assistant,
• CRUK Clinical Centre,
• Leeds,
• Phil Cotterell,
• Research Fellow,
• Centre for Citizen Participation,
• Brunel University

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Macmillans User-led research grant competition
at the NCRI Conference

• History where the idea came from
• The aims of the scheme
• How we took the idea forward
• 2006, the first competition
• Opportunities and challenges
• 2007 and beyond

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History where the idea came from

• 2005 NCRI Conference feedback
• 2006 NCRI Conference Planning Group
• The Macmillan Listening Study
• Involving Cancer Voices
• And a wing and a prayer

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Macmillan Listening Study findings priorities
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Macmillan Listening Study - recommendations

• NCRI strategy to access and respond to the views
  of people affected by cancer
• More effective dissemination to professionals and
  public
• Comprehensive appraisal of current evidence in
  each priority area prior to commissioning
• More research on Impact of cancer
• Encourage and support user involvement
• Recognise that user involvement requires
  facilitation and changes to working practices

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The aims of the scheme

• To demonstrate a way of actively involving people
  affected by cancer in research
• To promote wider involvement
• To start to take forward some new research on the
  impact of cancer on everyday life
• To demonstrate the usefulness of the Listening
  Study and bring it to life

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How we took the idea forward

• Use of the Listening Study as the focus
• Two-stage process with outlines at the conference
• Requirement for ideas to be tested with patient
  and carer delegates at the conference and signed
  off
• Collaboration a minimum requirement
• Full applications to be worked up from short-list
• Outlines assessed by 3 patients and 3 Macmillan
  staff
• Provided idea is feasible patient view decides
• Full applications subjected to expert peer review
  prior to assessment by same panel
• Initially proposed 1 award of 50,000 in 2006

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NCRI Conference 2006 user involvement in action
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Some outlines received at the 2006 conference

• 18 submitted, including
• Developing strategies to reduce anxiety /
  depression of women facing radiotherapy for
  breast cancer
• Enabling women with breast cancer to
  differentiate between musculo-skeletal pain of
  malignant and non-malignant origin
• The acceptability of health prevention
  information to relatives of dying patients
• Helping people affected by cancer to make good
  decisions about fertility storage
• Can patients help teach Health Care Professionals
  how to assess the sexual concerns of men and
  women with cancer
• Defining the effects of a diagnosis on the
  members of a patients family

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The 2006 winners

• Short listed 6 and made 3 awards (not the 1
  planned)
• Home but not Alone can user led support improve
  QoL in patients with HN Cancer? Sheila Fisher
  with Ethel Culling. Christine Allmark employed on
  grant
• Older womens experience of breast cancer
  alongside other health conditions Julia
  Addington-Hall with Richard Stephens
• Identifying the impact of service user
  involvement on the lives of people affected by
  cancer Phil Cotterell with Gwen Harlow

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Opportunities and challenges applicants and
patients

• Phil Cotterell on the opportunities and
  challenges presented by the competition for
  professional researchers
• Christine Allmark on the opportunities and
  challenges presented by the grant for a patient
  who is part of the research team

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Opportunities and challenges applicants

• Connection with previous experience/expertise/inte
  rest
• Opportunity to secure funding for research
  utilising a participatory methodology
  perception of acceptability compared with other
  sources of funding
• Opportunity for first post-doctoral principal
  investigator role (career and research
  development)
• Involvement was a key component of the study
  which was made clear in outline bid and full
  application including transparency about time
  for service user involvement and the financial
  implications

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Opportunities and challenges applicants

• Developed a research group in which two service
  user researchers were integral and five
  co-applicants formed part of the collaborative
• Time factored in for collaborative working and
  for three researchers to meet/support/discuss/make
  decisions
• Opportunity to make service user involvement in
  research a meaningful reality
• Making a difference design, data collection,
  analysis, report writing, dissemination. Definite
  value added
• Strong organisational and grant competition ethos
  of research with not for people affected by
  cancer

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Home but not Alone User-mentor support for
people with Head Neck Cancer

• Background
• Previous work (our group) shows people feel
  bereft in the period after discharge following
  first radical therapy.
• Our hypothesis is that User-mentors might provide
  support.
• Leading the work
• Users have a unique and complementary insight.
• Our aim is to enable a User to train as a
  clinical researcher to lead the study, the
  User-mentor training package and to develop this
  idea to clinical practice

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Home but not Alone User-mentor support for
people with Head Neck Cancer

• Design
• Focus Groups Oral, Laryngeal and Carers.
• Individual interviews.
• Contemporaneous diaries.
• Topic list forwarded prior to meeting (as per the
  Listening Study) to help ensure good discussion
  and consensus
• To provide evidence to underpin the development
  of a training package based on patient need.

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Home but not Alone User-mentor support for
people with Head Neck Cancer

• Progress so far
• The permissions ethics
• RD
• site specific
  approvals
• contracts
• CRB!!!!!...........
  ....................................
• Focus group accrual in progress
• Diary patient accrual in progress
• Aim To run the first focus group ASAP

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2007 and beyond

• 2007 competition 12 outlines received, 6 short
  listed and 3 awards made of 60k each
• Supporting relatives An investigation into
  obstacles and aids to information exchange within
  families affected by cancer Judith Robinson and
  Claire Foster
• The use of herbal medicines by people with cancer
  Christine Gratus and Sue Wilson
• The role of the primary care team in the care and
  support of patients diagnosed with cancer
  perspectives of patients, family members and
  primary health care professionals Eila Watson
  and John Belcher

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NCRI Conference 2007 user involvement in action
again
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2008 competition so far.

• 17 outline applications received
• Short-listing about to happen
• 3 or 4 awards planned of 60k each

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NCRI Conference 2008 user involvement in action
again
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What next? Developing the agenda further and
involving others

• Macmillan is happy to help and advise other NCRI
  partners on user involvement at all levels
• Development of an NCRI strategy to access and
  respond to the views of people affected by cancer
  (MLS recommendation 1)
• Comprehensive literature review method available
  for others to use and develop
• Further developing the research agenda on the
  impact of cancer on everyday life through the
  National Cancer Survivorship Initiative
• 2009 NCRI Conference competition plan your
  applications now!

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Jim Elliott Christine Allmark Phil Cotterell