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

Demographics: Race & Religion

Race Religion

What do you use to chat to family & friends?

105 responses

What do you use to go on-line?

105 responses

Do you contact cancer patients you have met?

104 responses

Do you contact cancer patients you haven’t met?

104 responses

How do you find out about your hospital and the treatments you are getting?

101 responses

Have you used these websites?

100 responses

How do you try to find out about your cancer and what can be done about it?

97 responses

How important is digital communication in your life?

97 responses

Please rate these websites out of 7

What would you want to have available?

96 responses

Which professionals would you like to contact digitally and how?

36 responses

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

Results

Discussion

Method

Aims

Background

THANK YOU