How do we get through this?

Mags Hanley23 March 2012

#GetThroughThis

http://xkcd.com/931/

A STORY

DEPRESSING?

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

Information seeking

“Drip-fed information”

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

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”

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

Initial diagnosis and treatment

On-going treatment

Appropriateness of the information

“Standardised information that is provided to everyone, regardless of the differences in

treatment”

Same but different

DCIS, Invasive, Ductal, LobularStage 1, Stage 2, Stage 3, Stage 4

Hormone dependent, Triple negativeBRCA1, BRCA2

There is customised care…

We all had different treatment based on the type of cancer

But the information is still very focused on 1. Surgery2. Chemotherapy3. Radiotherapy4. Hormone treatment

Appropriateness of information

“Inappropriate information for our age”

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

Life after…

“No-one tells you about what happens afterward”

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.

Information gatekeepers

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

Four different levels of support

Support – as time goes by

• Support groups• Mentoring • Psychotherapists and counsellors

Communication

It’s all social media – WRONG!

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

Communication methods

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

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

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

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

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

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

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

Thank you

Mags HanleyTwitter: magshanley

#GetThroughThis