Digital Communication Survey - London · PDF fileMike Groszmann Golnar Aref-Adib & Esha Abrol...
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Mike Groszmann Golnar Aref-Adib & Esha Abrol Ganeshi Wimalsingham & Rumana Lasker Taufiq Dawood Digital Communication Survey
Transcript of Digital Communication Survey - London · PDF fileMike Groszmann Golnar Aref-Adib & Esha Abrol...
Mike Groszmann Golnar Aref-Adib & Esha Abrol
Ganeshi Wimalsingham & Rumana Lasker Taufiq Dawood
Digital Communication Survey
Psycho-Oncology team at UCLH Consultant Child & Adolescent Psychiatrist
CT3 Psychiatry UCL Scheme
UCL undergraduate medical students
UCLH TYA Cancer Service staff T12, T13,Day Care
CLIC-Sargent Social Workers
Who we are
Results
Discussion
Method
Aims
Background
Digital Revolution
Digital Revolution
80% of UK households have internet access
Nearly half of all teens own a smartphone > 1 billion Facebook
users worldwide
Technology is changing the way patients learn about and manage their
health conditions
2 billion people estimated to have internet access
The Digital Native’s currency
Digital Revolution & Health
Patient empowerment
Evidence for efficacy of on-line support
Accessibility
Innovation
Positive use of technology
TEDX talks Dave deBronkart: Meet e-Patient Dave
Current research
Internet accessed differently amongst different patient groups
Attractive source of health information for chronic / stigmatising conditions: Anonymous Accessible Convenient
e.g. Xie et al (2013); van der Eijk (2013)
Current research – Adult Oncology data
2/3 patient use internet to find out about their illness
Clinical decisions can be affected by health related internet use
Health related internet use can lead to confusion
Lee, Gray & Lewis (2010); Castleton et al (2011); Zebrack et al (2013); Eastman (2010)
Psycho-Oncology
Problem Significant demand Difficulty accessing support Keen for groups, but difficult to successfully
implement
Solution • Develop an on-line service
Results
Discussion
Method
Aims
Background
Aims
Survey TYA patients use of digital-communications
Explore views on current on-line resources
Identify desired services for future
Results
Discussion
Method
Aims
Background
Discussed ideas with TYA London Cancer Board Developed a questionnaire Presented at UCLH TYA Senior Management meeting Piloted Amended Rolled out June 2013 for 4 weeks Paper questionnaires and emailed digital-survey Distributed on wards, Day Care, via E-mail.
Method
Results
Discussion
Method
Aims
Background
Demographics: Gender & Age
Gender
Age
Total 51
!37 18+ + 106=
Years
1
7 7
3
98
13
6
8
4
7
10
12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 Not stated
34
2 0 1
Median
Mean 18.1
10
Demographics: Race & Religion
Race Religion
52 White
17 Asian/ Asian British
11 Black/ Black British
6 Mixed
53Other
Prefer not to say
33 Christian
17 Atheist
Muslim
Agnostic
18
Hindu
Prefer not to say
JewishOther
9
7624
What do you use to chat to family & friends?
105 responses 84 84 78
58
41 37 32
12
Phone Text Facebook WhatsApp Skype Twitter Email BBM Other5
What do you use to go on-line?
105 responses
8274
3831
18
Laptop Smartphone Tablet (e.g. iPad)
PC Games Console
Other None of the above
12
Do you contact cancer patients you have met?
35
26
20
9
7
7
5
5
1
Text
Phone
No Yes
50% 50% Twitter
Skype
Other
BBM
104 responses
Do you contact cancer patients you haven’t met?
104 responses
5
3
3
2
2
1
1
1
0
Text
Phone
Skype
BBM
No
88.5%
Yes
11.5%
Other
How do you find out about your hospital and the treatments you are getting?
101 responses
6 6
90
4036
21
Information from
professionals
Leaflets Websites Friends/ family
Books Other
Have you used these websites?
100 responses
44 4339
9
Macmillan Cancer Centre
UCLH None of the above
Your local hospital
London Cancer
Other33
How do you try to find out about your cancer and what can be done about it?
97 responses
1315
81
43 43
22
Information from
professionals
Websites Leaflets Friends/ family
BooksOther
How important is digital communication in your life?
97 responses
0
Not at all Essential
10 16 26 430 2
Please rate these websites out of 7
Teenage Cancer Trust 1
Useless Excellent
5 10 12 2600
Total
52
Macmillan Teen & Young Adult 0 2 7 17 1420 42
CLIC Sargent 0 3 9 8 1300 33
London Sarcoma 0 3 4 5 520 19
Jimmy Teens 0 3 8 2 310 17
London Cancer 0 4 2 4 200 12
Youth Health Talk Teenage Cancer 1 1 4 0 220 10
Shine Cancer Support 0 1 3 2 030 9
Barts & The London kids 0 1 6 0 010 8
Other 0 0 1 1 110 4
What would you want to have available?
96 responses
Virtual on-line groups to chat to other young people who have to deal with cancer?
Counselling or psychological support on-line?
Receive information about your clinical condition, treatments, sources of support?
Able to share personal clinical information with professionals on-line?
Parents to have access to your on-line clinical information?
Yes
No
53
43
Yes
No
4155
Yes
No
65
31
Yes
No
49
47
Yes
No
49
47
Which professionals would you like to contact digitally and how?
36 responses
Doctors
Clinical Nurse Specialist
18
223
Total
22
PhoneText
Other
9
22
4
PhoneText
Other
15
Psychologist/ Counsellor3Email
Other 3
Social Worker, Radiographer, All
1 of each1
1
EmailText
1
What other services would be good to have online?
8 responses Clinical Services
Book/ check appointments Blood
results
Care plan on timeline
Symptom checker
Drug chart and side effects
What other services would be good to have online?
4 responses Information
Cancer awareness for healthy
teens
Shared care service
information
Anonymous case
histories
Q & A facility (cancer,
treatments)
What other services would be good to have online?
11 responses Peer support
Chat rooms
Social network
Support network for
parents
Youth Ambassadors
Forums
Search local area for
patients with a similar
condition Facetime
What other services would be good to have online?
3 responses Recreation
Group Events
Wifi
Games
Summary
70% consider digital communication very important or essential
~75% use phone, text, Facebook ~90% information from professionals; 35-40% leaflets &
websites 50% keep in touch with patients they met, mostly by
text and facebook. Very few contact patients they haven’t met.
~40% use UCLH and Macmillan Cancer Centre websites Favourite websites are TCT, Macmillan, CLIC Sargent
Currently
Summary
~40-55% want digital peer-groups, support, and information shared with parents
60% want information on condition digitally Wish to contact professionals, mostly Drs and CNSs, by
email. Some great ideas generated
Ambitions
Conclusions
Digital communications are important for TYA patients
Significant proportion want more on-line resources
Cannot replace the existing off-line channels
Current on-line provisions only modestly appealing
Opportunity to develop helpful resources
What next?
Focus group for TYA patients
Set up peer-support group using existing social networks
Improve and add to the available on-line information
Begin to scope developing a dedicated, secure on-line resource to enable shared-care?
Results
Discussion
Method
Aims
Background
THANK YOU
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