My presentation at the IA Summit on research with young breast cancer patients in London. The aim was to identify their information seeking patterns, circles of support and the way they communicate.

1. How do we get through this?
Mags Hanley
23 March 2012
#GetThroughThis

2. http://xkcd.com/931/

5. A STORY

6. DEPRESSING?

7. My research
Inherent biases
• Young breast cancer patients in London
• Aged 26 – 46
• Educated professionals
• Middle-class
• Met via The Haven a breast cancer charity,
providing support and complementary
therapy

8. Information seeking
“Drip-fed information”

10. Information seeking
• Most people did not seek further
authoritative information; used the
information provided by Breast Cancer Care.
• Either online or via booklet
• Only the women with science backgrounds
went looking for further information

11. Why?
• This is considered the right information by the
professionals
• Breast Cancer Care (the major source) is run
by nurses – a bit of the “nanny state”
• Finding other information requires more skill
and we are warned about “the Internet”

12. State of mind
• More decisions can be made after the initial
treatment, able to think more clearly and
consider more than life and death
• Treatment for secondary cancer becomes
another life and death situation; rely back on
the sources provided by the professionals

13. Initial diagnosis and treatment

14. On-going treatment

15. Appropriateness of the information
“Standardised information that is provided to
everyone, regardless of the differences in
treatment”

16. Same but different
DCIS, Invasive, Ductal, Lobular
Stage 1, Stage 2, Stage 3, Stage 4
Hormone dependent, Triple negative
BRCA1, BRCA2

17. There is customised care…
We all had different treatment based on the
type of cancer
But the information is still very focused on
1. Surgery
2. Chemotherapy
3. Radiotherapy
4. Hormone treatment

18. Appropriateness of information
“Inappropriate information for our age”

19. Getting better…
• Breast Cancer Care is providing more
information for younger women – forums,
weekend workshops and focused information
on fertility
• But still provided with the same information
as older women if it is the standard treatment
(surgery or chemo), even though we may have
different starting point for work, fitness, sex
and appearance

20. Life after…
“No-one tells you about what happens
afterward”

21. Life after…
• The ultimate goal for the doctors is keeping
the person alive
• For young women, the initial thoughts are
about what will happen after the treatment –
kids, family, partners and work
• The big one is kids.

23. Information gatekeepers

24. What about others via the Internet?
• Forums are either really good (factual
information like wigs) or have mixed results
(on treatment options – people with very
strong opinions one way or another)
• Blogs are mostly people not doing well; they
write not because they are getting better, but
to use it cathartically

25. Four different levels of support

26. Support – as time goes by
• Support groups
• Mentoring
• Psychotherapists and counsellors

27. Communication
It’s all social media – WRONG!

28. Communication
• Age and profession are considerations on
whether social media is used
• Secrecy and privacy were big elements for
many people on NOT broadcasting outside of
the first 2 circles of support

29. Communication methods

30. Summary - information
• Changing needs over time
• More detailed information needed after the
initial treatment period
• Living with the cancer – hardly ever discussed or
glossed over
• More control wanted once you start to live with
cancer

31. Summary - Support
• More need after initial treatment
• Places for people to talk – build rapport in
person and then extend online
• Web is part of the solution for these women,
but not the only place

32. Summary - Communication
• Small circles of people to inform and keep up
to date
• Social networks like Facebook and Twitter
where broadcast to many is the aim, may not
work for the majority
• But…there is opportunity for the younger
patients using free tools

33. What does this mean to us as
designers?
• Customisation by the users
• The information may be standard, but the need it
to allow the users to easily plug in their
circumstance and get the right information
• More design time needed to get the IA right
• There is a wealth of existing information and apps
– create the ways to gather them together

34. Working with the providers
• Talking more to the health professionals to tell
them what’s effective and what’s not
• Influencing charities like Breast Cancer Care
and MacMillan on what they provide in terms
of information and support

35. Designing support
• All about trust and meeting people in person
• Can communicate on the web and forums, but
needs the initial “whites of their eyes” to
establish the support network

36. Why is it important to us?
• As parents, adults with diseases and carers,
we are using the web as part of our
information ecology for health care – we
deserve better experiences
• As designers, we need to understand this is
more than buying a book or designing
multiple touch points for a mobile phone
company, we can improve and change lives

37. Thank you
Mags Hanley
Twitter: magshanley
#GetThroughThis