Information Prescriptions in practice

1
Information Prescriptions in practice

• Nicholas James
• Institute for Cancer Studies, University of
  Birmingham
• Editor-in-Chief CancerHelp UK

2
Acceptability and usefulness of the internet as a
source of information for cancer patients

• Harry Daniels -- Cultural Psychology in Education
• Jan Derry -- ICT and Pedagogy
• Nick James -- Oncologist
• Annie Young -- Nurse Specialist
• Rubina Rahman -- Social Scientist

3
Patient use of the internet

• Who uses the internet for cancer information?
• Why and when do they use it?
• How do they rate the internet as a source of
  information?
• How should we integrate it into our practice?

4
Who uses the Internet?
How the internet affects patientss experience of
cancer a qualitative study Zeibland et al, BMJ
2004328564-7
5
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
  Set up ICT access at hospital sites
• Phase 2
• Administer survey device
• Phase 3
• Analysis

6
Interviews

• 1000 face to face interviews
• 3 different hospital sites
• Wide range of primary tumours
• 800 patients, 200 carers
• Newly referred patients

7
Demographics

• Mean age patients 63.7y, carers 43.1y
• 89 patients left school below age 16, only 7
  still in work
• 79 white, 15 English as second language

8
Key findings from interviews

• People do not learn to use the web in order to
  seek information
• Availability of specialist support affects
  information seeking
• Patients are intermittent information seekers,
  carers tend to be constant
• Patients and carers will seek information if they
  are told to by the consultant.

9
Occupation of sample
10
Information sources
11
Who are the information seekers?
12
Information sources used by patients
13
Who has chosen information for you?
14
Who would you like to choose information for you?
15
Who has provided web-based information?
16
Usefulness of sources
17
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 97.5

18
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 aint gonna know what to ask unless
  you find out more for yourself.
• (a male bladder patient of white origin)

19
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.

20
Booklets versus Internet

• Do not help with navigation of information
  landscape
• Are rated as less useful by patients who had used
  both
• Do not allow specific tailoring of information to
  individual needs

21
Communication skills and education

• Much focus on communication skills how you tell
  something
• Much less focus on education skills what you
  tell someone
• Some simple strategies e.g. directed web use -
  appear to significantly improve the educational
  impact of information giving

22
Practical considerations
Clinician sees patient
Gives list of recommended topics
Patient goes to Patrick Room with list
Printouts or booklets provided as per need
23
Construction of prescription

• Information discussed
• Plan of management developed during consultation

24
(No Transcript)
25
Patient goes to Information Room
26
Information prescription discussed with patient
information team
27
Benefits for patient

• Tailor made information
• Utilises flexibility of web based media
• Can complement traditional booklets and leaflets

28
Format of prescriptions
29
Format of prescriptions

• Less structure gave more flexibility
• More suitable at subsequent events
• Relapse
• Change of therapy
• Summarising complicated therapy schedules, follow
  up plans etc

30
Future work

• Survey of medical staff attitudes to information
  provision
• Trial of information prescription
• End points
• Medical attitudes before and after study
• Change in information seeking behaviour with
  prescription of information

31
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
• Patients want hospital doctors (not GPs) to
  choose information for them
• 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