campaigning for cancer advocacy 101 jean mossman johannesburg october 2007
TRANSCRIPT
![Page 1: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/1.jpg)
Campaigning for Cancer
Advocacy 101
Jean Mossman
Johannesburg October 2007
![Page 2: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/2.jpg)
![Page 3: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/3.jpg)
Advocacy 101
• The concept of advocacy
• What will you advocate for and how will you do it?
• Developing your campaign
• Measurable objectives
• Keeping it going
![Page 4: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/4.jpg)
CancerBACUP
• Around 35,000 calls to nurses each year
• Over 50 booklet titles• Over 100 factsheets• Website with >1000
pages• 5 drop in centres
![Page 5: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/5.jpg)
Moving CancerBACUP into patient advocacy
In the UK before 1998 survival rates for cancer
patients were poor.
Cancer services were affected by– Uneven access to treatment (postcode prescribing)– Shortage of cancer-trained staff– Funding problems– Shortage of radiotherapy machines– Shortage of diagnostic equipment
![Page 6: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/6.jpg)
CancerBACUP had a ‘duty’ to advocate on behalf of patients
• Recorded the subject of enquiry from 1 in 5 calls
=>Heard about treatment access problems
=>Clinicians unwilling to speak out
=>Set up an advocacy programme ‘Equity and Excellence in Cancer Care’ funded by 5 pharma companies
![Page 7: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/7.jpg)
The concept of advocacy
Information Advocacycontinuum
Helps individual patients understand what is happening
Individuals and groups use information to press for better care
![Page 8: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/8.jpg)
Importance of receiving full information
Very important 81%
Fairly important 14%
Not very important 3%
Don’t know 2%
![Page 9: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/9.jpg)
Meredith et al - BMJ Sept 96
don’t want to know
whether illness is cancer 4%
what are the chances of cure 9%
what are the possible treatments 14%
what are all possible side effects
of treatment 6%
![Page 10: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/10.jpg)
Information• About the disease
– What causes it– Can it be prevented– Will it affect other family members– What is its likely course– What can treatment offer
• Diagnosis– What tests will be done– What they will entail– Will they hurt?– Should I bring someone?– Who should I ask?
![Page 11: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/11.jpg)
Information
• After diagnosis– Treatment options– Co-morbidity– Treatment side effects/polypharmacy– In-patient stays– Follow up– Supportive care available– ‘What can I do?’
• diet; exercise; work; sex; fatigue
– Complementary therapies
![Page 12: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/12.jpg)
‘With this information I was able to weigh up the costs and benefits of
treatment…………
…….. on the one hand, I would be committing myself to a prolonged course of debilitating and potentially dangerous treatment. On the other hand, I might gain my life.’
![Page 13: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/13.jpg)
From information to advocacy
‘To improve the quality of care patients must be encouraged to take part in treatment decisions. But patients need high quality, evidence based information to do so.’
Nash, Hicks and Dillner, BMJ 2003
![Page 14: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/14.jpg)
The concept of advocacy
Advocacy is speaking out on issues of concern.
This can mean be as simple as telling your colleague about something that might affect him; something as personal as demanding a particular treatment; or something challenging such as trying to change the way cancer care is provided
![Page 15: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/15.jpg)
![Page 16: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/16.jpg)
Advocacy
Individual
Group
Individual
Individual
Group
Group
Helps one person at a time
Helps several people but may not be very effective
Helps one person at a time
Helps whole group
![Page 17: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/17.jpg)
As a cancer patient, you are faced with a journey - but you have no idea of where you are going and no route map to help you get there
![Page 18: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/18.jpg)
![Page 19: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/19.jpg)
Patient costs for infusional vs oral 5Fu
Infusional• 3 days in
hospital/fortnight• Adverse events• Discomfort • Shortage of veins• Loss of dignity• Boredom• Frustration• Little time for real life
Oral• One day every three
weeks• Adverse events• Pills to take• Time to plan and do
things
![Page 20: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/20.jpg)
May 04
![Page 21: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/21.jpg)
Continuum of Patient Advocacy
PatientSupport
Provide support to patients and
families
Education &Information
DisseminationInform/educate
about disease and treatment
Individual Patient Public Influence
PoliticalActivity
Influence elected/regulatory bodies
about range of issues
Any or all of the above activities
![Page 22: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/22.jpg)
What will you advocate for and how will you do it?
![Page 23: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/23.jpg)
Reasons to campaign
• More doctors and nurses• Quicker access to treatment• Better quality of treatment• Earlier diagnosis• Psychosocial support• Reimbursement• Better facilities• Greater range of support services• More community care
![Page 24: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/24.jpg)
Be specific
• Patients may have difficulty accessing treatments due to:– Licensing issues– Reimbursement issues– Infrastructure issues– Clinician reluctance– Patient ignorance
![Page 25: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/25.jpg)
Get evidence to support your advocacy
• Is there a consensus on treatment?– Are there international comparisons that
apply?
• Are there different standards of care?
• Survey patients/doctors/nurses/politicians– Gain support from key stakeholders
• ‘Distress is not enough’
![Page 26: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/26.jpg)
Decide your message
“Every cancer patient deserves the best”
“Better care for patients”
“Declaration sets out patients’ needs”
“Support the Declaration”
“Put patient pathways in place”
“Greater priority for cancer patients”
“Equal care for all cancer patients”
“We need guidelines”
![Page 27: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/27.jpg)
Who will be your partners?
• Other cancer groups– National – Local
• Carers groups• Pain groups• Disability organisations• Professional groups• Industry• Others?
![Page 28: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/28.jpg)
Partnerships
Patient groupsProfessional
organisations
Industry
Shared goal:
Getting the right
treatment to
the patient
![Page 29: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/29.jpg)
Who is your audience?
![Page 30: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/30.jpg)
Start planning early
• Plan well in advance – the more time for preparation the less stress– Get support from your
organisation/colleagues– Draw up a plan– Put a calendar of actions in place– Work out cost & seek sponsorship if
necessary– Start developing relationships
![Page 31: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/31.jpg)
![Page 32: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/32.jpg)
Develop a calendar of actions
Task 2007Nov/Dec Jan/Feb Mar/Apr May/Jun Jul/Aug Sep/Oct
Decide messageAgree partnersStart developing relationshipsDevelop materialsIdentify case studiesPosition stories in monthly magazinesPosition stories in weekly magazinesTrain and brief key spokespeopleSend out press releaseBe available for interviews
2008
![Page 33: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/33.jpg)
What resources do you need?
![Page 34: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/34.jpg)
Case studies
• Identify people who are keen to tell their story
• Help them get their story clear
• Work with them on key messages
• Always support them in media events
• Remember to thank them – flowers are a nice way to do this
![Page 35: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/35.jpg)
Gain celebrity supporters
![Page 36: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/36.jpg)
Develop campaign materials
![Page 37: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/37.jpg)
What needs to be done?
• Target media– Preliminary education session– One to one meetings with key journalists– Will you break the press embargo?
• Send preliminary ‘hold the date’ to media• Send out campaign materials to partners• Send embargoed press release• Offer interviews with patients and other
supporters
![Page 38: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/38.jpg)
Grass roots advocacy
• Train patients and carers to be effective representatives
• Involve them in local decision making processes
• Letter writing campaign
• Take leaflet to own doctor
• Tell story to local media
![Page 39: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/39.jpg)
Parliament ‘Fly-ins’
• Can be a way of activating people from a wide area
• Arrange a day when advocates can meet their legislative representative
• Have a training day beforehand• Define two or three things representative
can do• Arrange a press release with photo for
local newspapers
![Page 40: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/40.jpg)
Set measurable objectives
• Will depend on what your advocacy purpose is
• Might be:– Meet 5 politicians– Place articles in 5 newspapers– TV coverage– Get doctors & nurses to press for treatment– Get reimbursement
![Page 41: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/41.jpg)
Patient Information Campaigns• CancerBACUP Fatigue
Campaign
• Started with two booklets produced by industry
• CancerBACUP edited and produced ‘Coping with Fatigue’
• Updated and revised
• One of most popular booklets
![Page 42: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/42.jpg)
Parliamentary Advocacy• Funding from multiple
pharma companies
• CancerBACUP advocacy programme
• Supported All Party Parliamentary Group on Cancer
• Britain Against Cancer conferences
![Page 43: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/43.jpg)
Awareness and Action
![Page 44: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/44.jpg)
Health Authority Surveys• Health authority
survey
• Anonymous return – no ‘naming and shaming’
• Circulated to Health Authority Chief Executives & Chairmen and parliamentarians
![Page 45: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/45.jpg)
Keeping it going
![Page 46: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/46.jpg)
Partners
• Keep them informed of successes
• Monitor press coverage and use that to sell the story
• Thank people who provided case studies
• Thanks spokesmen and review how their efforts contributed to success
![Page 47: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/47.jpg)
Keep the campaign going
• A campaign needs time to develop– Place stories before, during and after the
launch– Follow up with politicians– Ensure healthcare professionals know what
you are doing– Plan actions over a period of time– Link to other activities
![Page 48: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/48.jpg)
In summary
• Campaigns take energy and enthusiasm– You need these to get other people interested
• Preparation is key to success– Plan carefully
• Make sure you have case studies and spokespeople ready– Media training makes a difference
• Learn from the success of others– Keep an eye on what gets coverage– Use celebrities to gain media interest
• Don’t be caught out– Prepare for disasters
• Campaigns are long term
![Page 49: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/49.jpg)
No matter how big or small your objective is ………..
![Page 50: Campaigning for Cancer Advocacy 101 Jean Mossman Johannesburg October 2007](https://reader030.vdocuments.net/reader030/viewer/2022012904/56649dc55503460f94ab97c5/html5/thumbnails/50.jpg)
“As breast cancer survivors, we are in the best position to fight for and insist on better screening, diagnostic and treatment facilities as well as continued research to find a cure for this disease.”
Susan Knox
Executive Director, Europa Donna
Campaign with conviction and you will succeed