Cancer early detection and prevention strategy

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Cancer early detection and prevention
strategy Social marketingworkstream
A presentation for
22 October 2008
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Why are we here?

• To share progress in developing a social
  marketing intervention to reduce the health
  inequalities found in the early detection and
  prevention of cancer

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Our framework for action
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What have we done so far?

• Analysis of excess incidence and mortality
• to identify
• Which are the largest cancers?
• Which cancers kill the most people?
• What is the scale of inequality for each cancer?
  
• Where are the differences across the network?

Understanding the context

• Segmenting target groups to understand
• What are the risk factors for prevention?
• Who is late presenting?
• What are their lifestyles, attitudes and
  behaviours?

Understanding the audience

• Research among healthcare professionals
• and at risk groups to establish
• What are their underlying motivations for action?
• What are the key benefits and barriers to
  prevention and early detection?
• What can MCCN do to add most value?

Understanding behaviours
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Excess incidence and mortality by cancer
Lung cancer accounts for majority of excess
deaths. Below average incidence for most other
cancers but high excess mortality suggests need
for earlier detection focus
Source NHS/NWCIS data 2001 2005
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Some key differences across the network
Excess mortality
Given total region has higher than expected
excess for all except female bladder and male
skin cancer, only those regions with a Very Low
difference to total region have lower than
expected mortality compared to national average
Source NHS database, all comparisons with region
average in point
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Understanding the audience
Prevention what are the risk factors?
Detection who presents late?
Source Cancer reform strategy, NHS, Dec. 07,
Background information to inform the Cancer Early
Detection and Prevention Strategy Oct
07 Reducing Health Inequalities through improved
Early Detection and Prevention of cancer a
strategy for 2008-2010, Jan 08
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Inequality groups

• BMEs
• Diverse group with inherent cultural differences
  (e.g. 44 of Bangladeshi men smoke, Caribbean
  women are more likely to be obese)
• Particular issues around detection
• of Cervical and Bowel cancer
• Not aware of symptoms to look out for
• Talking about bodily functions isa cultural
  taboo
• Females cannot be seen by a male doctor
• Religion might prevent from seeking help and
  perceptions of screening as unclean

• Learning disabilities
• Particularly relevant to cervical and breast
  cancer, but also for bladder and bowel
• Late detection as low percentage attend screening
  
• Less aware, do not understand the importance of
  symptoms and therefore dont go to the doctor as
  quickly

• Mental health
• Particular issues for breast, cervical and bowel
  cancer
• less likely to attend screenings
• may not be monitored sufficiently to pick up
  issues
• Perception that symptoms can be overlooked or
  assumed to be part of the pre-existing
  condition
• Schizophrenics are 84 more likely to get bowel
  cancer than average

Sources Cancer reform strategy, NHS, Dec. 07,
Background information to inform the Cancer Early
Detection and Prevention Strategy Oct 07,
Reducing Health Inequalities through improved
Early Detection and Prevention of cancer a
strategy for 2008-2010, Jan 08, Wirral Cancer
Equity Audit, Apr 08, National Audit Office 2001,
Tracking Obesity in England, the stationary office
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Profiling risk groups

• Used TGI to segment the population by risk
  factors

Heavy smokers
Light smokers
Medium smokers
Heavy drinkers
Ive got to die of something anyway
Drinking is just part of my everyday life
Im too busy with the kids to look after myself
Lifes for living - I enjoy a smoke and a drink
Overweight
Obese
Unhealthy diet
Sun-bed users
Im not very confident and am self conscious
Im too young to worry about my health
Its important for me to look good
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For example - Sun bed user Louisa from Liverpool,
16 years old
Its important for me to look good

• 14.1 of the NW population aged 15 likely to use
  a sun-bed. (1.6 above national average) 2/3
  are female, all social grades

Louisa lives at home and is at college taking a
vocational qualification in hairdressing. She
really cares what people think of her and outward
appearance is everything. Status conscious, she
looks up to celebs and is a fashion conscious
shopaholic. She is always on a diet and feels
self conscious about her weight so she skips
meals to keep in shape. She likes taking risks,
trying new things and adventure. Always out, she
binge drinks with her mates and tries to get in
the bars to be seen in. She pops to the doctors
periodically perhaps to pick up her
contraceptive prescription
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Understanding behaviours
One to one depth research, focus groups and
workshops among healthcare professionals and at
risk groups to understand knowledge and attitudes
and to identify any potential barriers and
opportunities for the future
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Achieving behaviour change
Source Fostering Sustainable Behaviour Doug
McKenzie Mohr, William Smith
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GP barriers
What barriers do we need to overcome to improve
early detection and prevention of cancer?

• Time
• Not enough appointments available/phone-lines are
  busy
• Not in QOF/not my responsibility
• Work overload for primary care staff
• Approachability of HCP
• Apathy/denial
• Attitude its nothing serious
• Age too young to be anything serious / too old
  for it to matter now
• no family history
• People are too busy they dont check and they
  dont ask
• Dont want to bother doctor

• Fear
• Fear of cancer and of screening process itself
• Embarrassment at symptoms (esp males)
• Awareness/information/
• mis-information
• Lack of awareness of symptoms
• Lack of information getting through to public
• Lack of information for staff
• Carers of learning disability patients need
  education

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GP - opportunities
What can we do to increase early detection and
prevention of cancer?

• Easy access to screening
• More opportunities in different locations to give
  patients choice, including open clinics and drop
  in
• Better information and education
• Patient education and awareness raising
• Simple checklists of what to do to prevent cancer
  and what to look out for
• Signposting to clinics and screening
• Practice website, Newsletter, Message on
  prescriptions, leaflets, TV ads and storylines,
  schools and colleges
• Training for staff and on screen reminders
• Reward patients/ better follow-up
• Good system for rewarding patients especially if
  miss initial screening
• Follow up and education of non-attendees

• Relationship building/more conducive environment
• Approachability of staff
• Good relationship GP or practice nurse
  encouraging patients to mention symptoms
• Confidential areas to speak with staff/patients
• Refer earlier
• Referral system
• Change referral form to not include irrelevant
  symptoms
• Fast-track referral when not symptomatic
• One-stop anaemia clinic
• Not sticking too rigidly to guidelines
• Hunch clinic (sixth sense)

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Pharmacy - barriers
All keen to emphasise their willingness to help,
but practical barriers exist

• Time
• Pharmacists are enthusiastic but there is a
  limit to what we can do
• the workload, we are near saturation
  point...the government is asking us to do more
  year on year
• Confidence
• Pharmacists arent specialists, cant diagnose
  and will always refer patients to their GP
• we dont get an in depth view of patients
  symptoms
• you have to be really wary about how you say
  things
• you cant force people to go to their GP if you
  think it is cancer
• Drs are trained to break news like that using
  their skills

Fear people think cancer means death they dont
want to know Embarrassment some screening is
invasive and people dont like that...or bowel
cancer you have to provide a sample Apathy/denial
Biggest thing about screening - what I dont
know, wont hurt me... AwarenessEducation,
education, education is the main barrier to
early detection - we dont expect to get
screening unless you pay for private
healthcare half the battle is getting people to
the hospital even if they do make an appointment
for screening, 50 dont turn up - perhaps a
small charge should be made for appointments?
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Pharmacy - opportunities
What can we do to increase early detection and
prevention of cancer?

• Building knowledge and extending signposting
• Training as part of CPD
• If you train the pharmacists to know where
  people could go to get extra help and say these
  are the options
• Remember pharmacists dont always know as much
  as people think they do there are new drugs
  mentioned all the time and everyone wants to know
  about it
• Communicating via the RPS, professional press and
  post
• Providing information to patients
• Leaflets and posters in store and inserts into
  prescription bags make things more accessible

• Education
• its an ongoing battle... education is always
  going to be needed
• Make people more aware of self checks or what is
  available at pharmacies
• Follow up
• targeting those requiring smear tests but
  following up with a phone call
• Referrals
• Pharmacists might not want to advise people so
  they would need a suitable way to refer them

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Risk groups attitudes to health

• Combination of drinking, smoking and poor diet is
  the norm yet they do not link this to the
  possibility of cancer
• Heart problems more of an immediate concern and
  many visit GP for blood pressure and cholesterol
  checks
• Generally unwilling to bother doctor
  un-necessarily only visit if everyday life is
  threatened
• More likely to worry about the health of others
  (e.g. partner) than their own
• Biggest fear is not being independent and having
  to rely on others leveraging this concern
  around the process of cancer may be a key trigger
  to behaviour change

Life is for living when my time is up, its up.
Its all in the genes anyway.
The last thing I want is to become dependant on
someone else.
Eat, drink and be merry for tomorrow you might
die.
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Attitudes to cancer
For the majority, cancer is not a major concern,
despite having seen the suffering of close family
or friends
If you dont talk or think about cancer, it wont
happen to you.
Im not in pain at the moment, so I dont need to
worry about my health.
If you get cancer, you will die - eventually it
will get you and treatment will only prolong the
inevitable.
Theres very little you can do to prevent cancer
happening its more about the luck of the draw.
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Attitude to screening services

• Majority positive to screening if it is suggested
  to them but do not actively seek it out because
  it is not on their radar
• Women more familiar than men via cervical and
  breast programmes
• Some experience of bowel screening via DIY postal
  packs - a couple rejected as they didnt like the
  idea of the test and subsequent colonoscopy
• A few would resist screening
• Fear of having to change lifestyle once you
  know you cant ignore it
• Would rather not know they might die
• Scared of the treatment for cancer if positive
• Cancer would mean too much emotional and
  financial pressure for their partner (men)
• Scared of the other consequences of cancer
  colostomy bags

I would like to know if there was something wrong
with me because I think Im half way there now
(50 yrs) so Im thinking anything that can make
my life better at my age no matter how big or
small it is a good thing.
The NHS sent me a simple test and I havent
bothered. Theres nothing you can do about it if
youve got it youve got it. If youre numbers
up, your numbers up.
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Barriers - Attitudes to prevention
People not sufficiently motivated to alter their
lifestyles in the hope of avoiding cancer
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Barriers - Cancer knowledge

• Very poor knowledge and lack of desire to know
  more
• Virtually nobody could articulate the causes
  when pushed, most mention genes, polluted
  environment and smoking
• Information gained via shock stories in the media
  leaving the majority unable to separate myths
  from facts

Key insight Communication needs to be
straightforward and simple to understand. There
is a need to dispel the belief that cancer is
solely about genes
They reckon smoking causes cancer but I wont
have that. You see babies with it in the paper.
Its not healthy but it doesnt cause cancer.
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Barriers - Symptom awareness

• Limited awareness of symptoms and common
  misconceptions
• Strongest knowledge of lung symptoms accompanied
  by denial and written off as just winter
• Bowel symptoms assumed to be tummy bug or piles
  would self medicate
• Bladder symptoms assumed to be infection and most
  likely to be ignored
• Strong desire to know more as a trigger to
  action
• One respondent had all 3 bowel symptoms but
  hadnt realised they could be connected. She
  vowed to make an appointment that day showing
  that once symptoms are known, the information
  would be acted upon

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Barriers - ignoring symptoms

• Mostly
• Dont believe their symptoms are serious
• Symptoms too trivial for doctor, dont want to
  waste doctors time
• Miss self diagnose (Flu, piles etc.) and self
  medicate
• Difficult to get an appointment at the doctors
• Embarrassed about talking about their symptoms
  (men)
• Too proud (illness is a sign of weakness for some
  men)
• For some
• Too old to do anything about it when times up
  its up
• Protecting their loved ones from what they
  suspect deep down
• Believe that treatment will only delay the
  inevitable
• Frightened about what will be found
• Probably too far gone for treatment
• Nervous of the effects of the treatment

I went to the doctor because I found blood when
I was coughing. He told me Id burst a blood
vessel in my throat. I cough up blood all the
time now but I dont go to the doctor because I
know what it is
Its hard work to get an appointment at the
doctors. You could be dead by the time youve got
one in a fortnights time
Sometimes I think Ill leave it because Ill go
round the corner to the chemist and hell give me
something.
Its not that he doesnt want to tell his wife,
hes afraid to tell her. He doesnt want to worry
her.
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Opportunities clear symptom information
Playing on symptoms people may be experiencing
can exacerbate fear although there is a need to
elevate perceptions of minor ailment to overcome
unwillingness to bother doctor.
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Opportunities - Reaching out
Unanimously positive to mobile clinics
convenient, local, friendly nurses. Seen as more
specialist and more approachable than the GP.
Strong desire for signposting to find out more
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Opportunities peer to peer
Engaging real people to share positive early
detection stories and tools to pass on knowledge
to others
My husband wouldnt go to the doctor unless he
really had to. He had bleeding and wouldnt do
anything about it until I found out. (female)
I have a mate down at the pub. He goes to the
toilet, like every five minutes. Ive told him
he should go to get checked out, weve all told
him, but he wont listen. He says, Ill be
fine, Im fine, I think he thinks its too late
and hes a bit frightened.
Ive just been to Ireland with this man and I
heard him getting up in the middle of the night
and he was taking forever to wee and I said to
him you need to go to the doctors. He said
theres nothing wrong with me and I said there
is, there must be, you were up and down all night
and I could hear you. I said look, it could be
prostrate, its no big deal, just go, most men
suffer with it.
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Consequences of in-action...
More shocking and personally relevant for those
who persistently dont attend screening. Link to
trauma they would put their family through
resonates highly.
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Summary emerging insights

• Driving earlier detection offers more
  opportunities than prevention
• There are significant barriers to overcome among
  healthcare professionals as well as risk groups
• To trigger people to act
• Symptom education must be simple, consistent and
  sustained across all channels
• Screening should be heavily promoted and followed
  up
• Services should be more accessible within the
  community
• Maximise opportunities to engage during routine
  visits to pharmacy, practice nurses, workplaces
• Grass roots activity using peer pressure and
  impact on loved ones tools for positive role
  models who bust the myth that cancer is death and
  inspire others to come forward early

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Next steps

• Further research among patients - one to one
  depths among risk groups for cervical, breast and
  skin cancer
• Interviews with experts in specific inequality
  areas of mental health and learning disability
• Stakeholder engagement to share insights and
  prioritise actions
• Articulate the social marketing strategy and
  design interventions to reduce inequalities among
  key groups

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Thank you Any questions? For more information
please contact belinda.miller_at_corporateculture.co.
uk
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Health and the Muslim community

• Health is highly valued it is the teaching of
  the Koran to take care of body and health
• Belief that God decides your fate and you need to
  accept that
• Did not look out for the symptoms of cancer
• No awareness of screening
• Language barriers mean letters/information in
  English are ignored
• Women unwilling to discuss screening with
  daughters culturally not done
• Preferences for screening would be for it to be
  conducted in the GPs or via a mobile unit (near
  the Community Centre) by a female nurse

Although we are not supposed to drink alcohol if
a doctor said drink alcohol for 2 weeks and then
you would be better we would do it, we would be
expected to do it. Health overrides.
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Knowledge of the causes and symptoms

• Bowel
• Most unaware of causes
• Belief it may be linked with contaminated food
  rather than lack of fibre
• Most did not know the symptoms and would self
  medicate for tummy bug
• A few mention blood in stools assumed to be
  piles

• Bladder
• Most unaware of causes
• Belief it could be linked to alcohol
• Most did not know the symptoms generally passed
  off as a urinary tract infection and particularly
  likely to be ignored
• Some mention pain when passing water

• Lung
• Wide knowledge of link to smoking, accompanied by
  much denial. Some mention environmental and
  industrial pollution
• Some recall of symptoms (coughing, phlegm,
  breathless) often written off as just winter.

Key insight All were genuinely interested in
what to look out for. Although they wouldnt
change their behaviour to prevent cancer , if
they found out they had signs of cancer they
claimed they would seek treatment for it