Campaigning for Cancer

Advocacy 101

Jean Mossman

Johannesburg October 2007

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

CancerBACUP

• Around 35,000 calls to nurses each year

• Over 50 booklet titles• Over 100 factsheets• Website with >1000

pages• 5 drop in centres

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

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

The concept of advocacy

Information Advocacycontinuum

Helps individual patients understand what is happening

Individuals and groups use information to press for better care

Importance of receiving full information

Very important 81%

Fairly important 14%

Not very important 3%

Don’t know 2%

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%

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?

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

‘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.’

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

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

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

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

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

May 04

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

What will you advocate for and how will you do it?

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

Be specific

• Patients may have difficulty accessing treatments due to:– Licensing issues– Reimbursement issues– Infrastructure issues– Clinician reluctance– Patient ignorance

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’

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”

Who will be your partners?

• Other cancer groups– National – Local

• Carers groups• Pain groups• Disability organisations• Professional groups• Industry• Others?

Partnerships

Patient groupsProfessional

organisations

Industry

Shared goal:

Getting the right

treatment to

the patient

Who is your audience?

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

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

What resources do you need?

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

Gain celebrity supporters

Develop campaign materials

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

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

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

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

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

Parliamentary Advocacy• Funding from multiple

pharma companies

• CancerBACUP advocacy programme

• Supported All Party Parliamentary Group on Cancer

• Britain Against Cancer conferences

Awareness and Action

Health Authority Surveys• Health authority

survey

• Anonymous return – no ‘naming and shaming’

• Circulated to Health Authority Chief Executives & Chairmen and parliamentarians

Keeping it going

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

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

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

No matter how big or small your objective is ………..

“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