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DoH project Acceptability and usefulness of the internet

as a source of information for cancer patients

�Harry Daniels

�Jan Derry

�Nick James

�Annie Young

�Rubina Rahman

Learning about cancer

the complexity of the fluid, complex, continuously changing landscape of everyday life... that, in fact, is perhaps best thought of as a seascape requiring navigational skills!

John Shotter 1997 WITTGENSTEIN IN PRACTICE

In C.W. Tolman, F. Cherry, R. van Hezewijk, and I. Lubek (Eds.) Problems

of Theoretical Psychology. York, Ontario: Captus Press,

To identify new models of learning

and innovation and new conceptual

tools to support work-based

learning and e-learning in a range of

different contexts.

Acceptability and usefulness of the internet

as a source of information for cancer

patients

Acceptability and usefulness of the internet

as a source of information for cancer

patients

The study was designed to establish:

1. what attributes of information resources are

important for patients and significant others

2. which attributes of information resources are

associated with particular media types

3. which media types are associated with success in

finding useful information

4. differences in use, attitudes and beliefs about the

Web associated with cancer site

5. differences in use, attitudes and beliefs about the

Web associated with demographic factors, Internet

experience and patient or significant other status.

CancerHelp UK

www.cancerhelp.org.uk

� Large patient website, joint project with Cancer

Research UK

� > 7.5 million hits/month

� Listed by CRUK as one of 4 main highlights

� First patient orientated searchable trials database

launched November 2000

Acceptability and usefulness of the internet as a

source of information for cancer patients and carers

Phase 1

� Identify themes to be explored in questionnaire (OMR)

� Set up ICT access at hospital sites

� Obtain agreement for informed consent procedures

(nurses) and administration

Phase 2

� Administer survey device

Phase 3

� Analysis

2

Acceptability and usefulness of

the internet as a source of

information for cancer patients

Phase 1 --- non-directive approach

� Nominal groups --- ‘what is important about

the way you find out information about

cancer’ + probes

� Personal Construct Interviews -- using

sources of information as elements

Demographic Data

Mean Age

�Patient 62yrs

�Carer 43.3yrs

Education

� Left school at 16 or below 80%

� Left school at 18 7.6%

� Further Education 6.6%

� University Education 5.1%

Information Sources

0

20

40

60

80

100

Leaflets

books

family

friends with cancer

other patients

helpline

nurses

GP

Hospital doctor

newspaper

womens magazines

other magazine

TV

Who are the information seekers (percentage)

0

20

40

60

80

100

120

sources

Patients

Carers

Who is choosing the information

0

10

20

30

40

50

60

sources

Doctor

Nurse

Family

other patients

other

None

3

Who would you like to choose information for you

0

10

20

30

40

50

60

70

80

90

sources

Doctor

Nurse

Family

other patients

other

None

The Internet

0

10

20

30

40

50

60

sources

Internet user

Cancer specific user

Web Info provided by

someone else

Web based information provider

0

10

20

30

40

50

60

sources

Doctor

Nurse

Family

other patients

other

Perceived advantages of the web

from point of view of ‘expert user’

� Fast and efficient

� Easy to use

� Able to use it in your own time in private

� You can bring in printouts

� Good links

� Appears to be an association between use of the

web and question asking behaviour

Acceptability of web based information

� Explained well 98%

� Trustworthy 86%

� Relevant 100%

� Designed for me 45%

� Accessible 98%

� Adequate detail 85%

� Understandable 98%

� Useful 98%

� Valuable for learning about treatment 93%

� Allows me to think in private 97%

Knowing what to look for

� “…..you can expect nothing from your Dr

unless you know what to ask… most

patients here are too shy and you ain’t

gonna know what to ask unless you find

out more for yourself….”

(a white male bladder patient)

4

Those who have been given

web-based material by others:

� Are younger (p<0.000)

� Found it easier to understand information about cancer (p=0.01)

� Like finding out info from leaflets more (p<0.00)

� Like finding out info from family more (p=0.02)

� Found information from nurses more useful (p=0.04)

� Liked finding out info from hospital doctor more (p<0.00)

� Found info from hospital doctor more useful (p<0.00)

� Like finding out info from a support centre more (p=0.04)

Health Beliefs� Greenhalgh et al (1998) study on health

beliefs in British Bangladeshis

� doctor was viewed as a busy, authoritative

and knowledgeable person

� rarely makes mistakes

� full understanding of the condition he or she

treats .

� doctor’s instructions should always be

obeyed.

Health Beliefs

�Working class and older Bangladeshi and

Pakistani patients seem to talk about cancer

being the will of ‘Allah’ (god) and that seeking

information from other sources would be of

no help.

�“……no amount of knowledge can help me

now. Reading a book or looking on the

computer will not help what is the will of

Allah……..”(first generation Pakistani breast

cancer patient)

Health Beliefs

�“…….I don’t think that looking for more

information is good……the doctor knows

my case and tell me what I need to know,

how can I know more than the doctor….I

wouldn’t know where to look….what has

happened to me is in Allah’s hands now”

(a first generation Pakistani carer whose

son has cancer)

Gender

Males preferred a policy of life as normal in which

cancer could be forgotten. Women are much more

likely to obtain web based information from

someone else (highly sig)

“………once I am out of here I’m gonna forget I’ve

got it… I don’t need to find out anything else or read

no books all I need is to get through each day

normally like everyone else…..” male patient with

bladder cancer receiving chemotherapy

Gender

In contrast a breast patient reveals:

“………I needed to find out as much as I

could……I went to the library, I always

talking to the other patients when I was in

chemo…….and I always have a set of

questions ready before I see the

doctor…….”

5

general vs specific

“..leaflets are really useful at the

beginning cause they don’t give too

much information which can scare

you to death, books are more

detailed and you can find out more

about tumours……”

(a 45 yr old breast cancer black

patient)

general vs specific

“……I don’t understand no books

cos they’ve got too much detail,

leaflets are easy cause they are

general….”

(a 61 yr old male colorectal white

patient)

Key findings from interviews

� People do not learn to use the web in order to

seek information

� Availability of specialist support

� Patients are intermittent information seekers -

carers tend to be constant

� Patients and carers will seek information if

they are told to by the consultant.

Living alone or attend on their own

� not responsive to concept of information seeking -

- rely on the doctor for knowledge

� Poor question asking behaviour

Carer present

� tend to be more interested in seeking information

� better question asking behaviour

Question asking behaviour

� Good question askers appear to be more

knowledgeable, have questions prepared prior to

medical consultation, use a strategy for gathering

information -- often using carer -- ‘I go into the

room my mind goes blank’ the carer is asked to

remember what has happened or this remains a

tacit element in ‘advocacy’ relationship.

� Appears to be an association between use of the

web and question asking behaviour

Expertise in use

Those who use the internet to seek

information about cancer are ‘expert’

users

59% said they were totally confident

about narrowing down information

on the web.

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The Internet is Acceptable

“I can do things in my own pace,

print articles that are relevant and

set an alert on email for the latest

information on a specific type of

cancer”(32yr old male carer)

“its so easy to use….so much

information at the click of a button”(28yr old female carer)

The Internet is Useful“..it is information that is sourced

from professionals and

conferences throughout the world”(38 yr old female carer)

“…its up to date information…”(30 yr old male carer)

“…compared to a leaflet it has so

much more width and energy…”(41 yr old male carer)

uncertainty and

contingency

�An expert is someone who has reduced the uncertainty in a task situation. Learners for whom uncertainty is high require support in the process of reducing the uncertainty or ‘learning the landscape’ of the task.

uncertainty and

contingency

�When uncertainty concerning a

task is high is the support

should be contingent upon the

responses of the learner

Conclusions

� The web appears to be both acceptable and useful to those who use and those who are provided with information from it

� Patients do not learn to use the Web to find out more information about cancer

� Family and friends provide web based information but sites not designed for them

� Patients want hospital doctors (not GPs) to choose information for them but carers do this at present

� Patients will undertake information seeking tasks when directed by hospital doctors

� Doctors can provide expert landscape navigation -- with a minimal demand on time and resource

Object – Nation’s health

•promote patient choice,

•informed consent,

•shared decision-making and

self-care

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Doctor

� can provide the expert navigation to the

patient or carer,

� directing them to the relevant website from

the onset of a cancer diagnosis.

Demands

� requires the hospital doctor to be proactive

and sensitive in their engagement with their

patients and carers processes of learning.

� minimal demand on their time and resource

Sociotechnical systems

� "ease-of-use" and "universal access"

are not enough.

� Patients need conceptual frameworks

to help organize their activity,

� They need mediators to enable the

activity.

Existing resources

� Patrick Room

� Suite of standardised patient

information across Network

� Previous information systems

developed with DOH internet research

Clinician sees patient

Gives list of recommended

topics

Patient goes to Patrick Room

with list

Printouts or booklets

provided as per need

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Construction of prescription

� Information discussed

� Plan of management

developed during

consultation

Benefits for patient

� Tailor made information

� Utilises flexibility of web based media

� Can complement traditional booklets and

leaflets

Format of prescriptions Information Prescription Pilot

� Build on existing systems

� Utilise our research findings

� Integrate with Cancer Measures

Project Team for Pilot

� Prof Nick James - Oncology

� Lynne Dodson - Lead Cancer Nurse

� Prof Harry Daniels - Educationalist

� Paul Litchfield - Information Manager

� Radha Bisnauth - Project Facilitator

� Inigo Tolosa - Clinical Psychology

� Rachel Casserley - Oncology Group Manager

Clinical nurse specialists

� Zoe Neary

� Claire Goddard

� Mary Kirkham

� Sophie Philips

� Paula Mitchell

Medical illustration

� Andrew Dakin

Cancer Network

� Claire Lane

How

� Engaged clinical teams by presentations� Multi-disciplinary team meetings

� Head & neck

� Upper GI

� Neuro-oncology

� Lung

� Urology

� Oncology Executive Committee

� Clinical Nurse Specialist team meetings

� Network Patient User Group

� Cancer Network

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How

� Issuing prescription during consultations -

diagnosis, change of treatment - both

surgery and oncology

� Developing the prescription formats with

teams

� Focus groups with patients

Body part diagrams

Prescription proformas

� Has been a positive process

� Involving teams who don’t usually work together

� Include psychology information and medical illustration dept

as well as MDT

� Patients groups

� Meets other national standards for cancer patients

� Record of consultation & treatment options

� Information to GP / others

Benefits

Utterly lost Breast cancer

support group

helped least

Breast cancer

nurse helped

most

1 year after treatment became very anxious that I had the had the best .

Discussed with oncologist and BCN

Obtained research data from

ongoing and completed trials

information collected from

research nurse research

centres and

Where am I now

Female

Breast cancer

Best

possible

Patient involvement - sculpting Initial feedback from focus sessions � Information must be patient centred

� Patients truly value hand writing – it personalises their care

� They keep the “prescription”

� Face to face consultation with information exchange

� They trust consultants to give accurate information

� Specialist nurse involvement critical

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What helps

� Clinical lead who engages with the cancer

teams

� Enthusiasm from clinical staff

Bibliography

� Daniels H, James ND, Rahman R, Young A, Derry J, McConkey C (2007) Learning About Cancer. Mind Culture and Activity 14: 128-141

� James ND, Daniels H, Rahman R, Derry J, McConkey C, Young A (2007) A Study of Information Seeking by Cancer Patients and their Carers. Clin Oncol (R Coll Radiol ) 19: 356-362

� Tweddle, S., Avis, P., Davies, D., James, N., and Daniels, H. A method for investigating the useage of a cancer website. New Technology in the Human Services 11[1], 12-16. 1998.

� Tweddle, S., James, C., Davies, D., Harvey, P., James, N. D., Mossman, J., Woolf, E., and Daniels, H. Use of a web site for learning about cancer. Computers in Education . 2001.