Empowering consumers by understanding their needs - A CIS internal seminar for discussion my consumer health informatics projects.

1. 1
Empowering
Health Consumers by
Understanding
Their Needs
Dr Patrick Pang
•School of Computing and InformationSystems
Dr Patrick Pang @pangpatrick
pat.pang@unimelb.edu.au
School of Computing and Information Systems

2. Digital Health (e-Health)
→ Consumer Health Informatics
Consumer health informatics is the branch of medical
informatics that (Eysenbach, 2000):
• analyses consumers' needs for information;
• studies and implements methods of making information
accessible to consumers; and
• models and integrates consumers' preferences into
medical information systems.
My Research
2
Eysenbach, G. (2000). Consumer health informatics. BMJ : British Medical Journal, 320(7251), 1713–1716.
Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1127483/
2 Oct 2018 @pangpatrick

3. Consumer –
patients and potential patients, carers, and people who use
health care services (NHMRC & CHF, 2016; p.6)
What are Health
Consumers?
32 Oct 2018 @pangpatrick
National Health and Medical Research Council, & Consumers Health Forum of Australia. (2016). Statement on
consumer and community involvement in health and medical research. Retrieved
from https://www.nhmrc.gov.au/_files_nhmrc/file/publications/16298_nhmrc_-
_statement_on_consumer_and_community_involvement_in_health_and_medical_research-accessible.pdf

4. 4
Source: Startup Health Insights, U.S. (2017)
Source: Consumer Health Forum of Australia
Source: Australian Institute of Health Welfare

5. 1. Engaging Consumers in Health Research
2. Supporting Women after Miscarriage
3. Australian’s Responses to #MyHealthRecord
on Twitter
4. Information Needs on Chinese Social Media
Some Work-in-progress
Projects
2 Oct 2018 @pangpatrick 5

6. Engaging
Consumers in
Health Research
6

7. Aim
Recruiting consumers and engaging them into health research is hard.
But, have we considered the consumer perspective in the research?
• What do they look for?
• What do they expect to gain?
• What are the things they are enthusiastic about?
This is valuable knowledge for constructing and planning research projects.
72 Oct 2018 @pangpatrick

8. Method and Findings
Method:
Collaborated with Musculoskeletal (MSK) Australia
Interviewed 23 consumers and 10 researchers
Findings (Pang et al., 2017):
Consumers need the following from research:
1. Learning opportunities
2. Research transparency and updates
3. Trustworthiness
4. Help with their mobility (and some of them live in rural locations)
82 Oct 2018 @pangpatrick
Pang, P. C.-I., Clavisi, O., & Chang, S. (2017). Engaging Consumers with Musculoskeletal Conditions in Health
Research: A User-Centred Perspective. Studies in Health Technology and Informatics, 239, 104–111.

10. Supporting
Women after
Miscarriage
10

11. Miscarriage affects one in four confirmed
pregnancies
Silence is common
• Because women often wait to disclose their
pregnancies after the first trimester
Women have feelings of grief, loss, anger, and
guilt
• Also feeling alone and unsupported
• And they have nowhere to talk
Background
112 Oct 2018 @pangpatrick

12. Online support is not new, and it is a good place
for providing support
Health website has a lot of “fact sheets”
There are also discussion forums on the web.
But do women want these?
Our goals:
• What do women with miscarriage experience
want?
• How do we make online support better?
Online Support
122 Oct 2018 @pangpatrick

13. Women’s Needs
Information Needs
• Causes of miscarriage
• Frequency of miscarriage
• Symptoms of miscarriage
• Preparing for a new pregnancy (e.g. IVF)
• Research and breakthroughs
• Learn from other’s experience, but not
attaching to ideas from others
13
Support Needs
• Ways to cope with grief
• Advice for family, friends and healthcare
professionals around things to say/not
to say
• Preventing blame and normalising the
experience
• Memorial of the loss
2 Oct 2018 @pangpatrick
Interviewed 12 women (mean age 36; range 27-48)
Median number of miscarriages: 2 (range 1-7)

14. 1. Providing story sharing and memorial
functions
2. Design and branding
3. Marketing
4. Keeping women informed about latest
research
(Pang et al., 2018)
Design Considerations of
Online Support
142 Oct 2018 @pangpatrick
Pang, P. C.-I., Temple-Smith, M., Bellhouse, C., Trieu, V.-H., Kiropoulos, L., Williams, H., … Bilardi, J. (2018). Online
Health Seeking Behaviours: What Information Is Sought by Women Experiencing Miscarriage? Studies in Health
Technology and Informatics, 252, 118–125.

15. 2 Oct 2018 @pangpatrick 15

16. Australian’s
Responses to
#MyHealthRecord
on Twitter
16

17. Background
Everyone will have one if you do not
opt-out before 15 November 2018.
It stores sensitive information, and
therefore controversial.
Debate on:
• Clinical benefits
• Privacy, security and control
Discussions have become political (?)
Source: My Health Record
2 Oct 2018 @pangpatrick 17

18. 1. What are the positive/negative views on
Twitter?
2. Who is saying what? What #hashtags?
3. What are the implications of using social
media for public health initiatives?
Now we are downloading tweets with these
keywords using the Twitter Search API:
• “my health record”, #myhealthrecord,
#myhealthrecords, @MyHealthRec, #myhr,
#MyHealthRecordFail
What do we want to
know?
182 Oct 2018 @pangpatrick

19. Some Intermediate Results
131,857 tweets so far (since 9 July – 1 week before the start of opt-out period)
Processed with the AWS Comprehend Sentiment Analysis API
19
Count
Average
Retweet
Average
“Liked”
Non-retweet 29,366 3.628 4.979
Neutral 25,612 3.547 4.431
Positive 1,429 3.656 11.823
Negative 2,230 4.602 6.949
2 Oct 2018 @pangpatrick

20. Information
Needs on Chinese
Social Media
20

21. Rest of the World China
China has a different “Internet”
2 Oct 2018 @pangpatrick 21
(renren.com)

22. Related Work about
Twitter
22
Lee, L. J., DeCamp, M., Dredze, M., Chisolm, S. M., & Berger, D. Z. (2014). What Are Health-Related
Users Tweeting? A Qualitative Content Analysis of Health-Related Users and Their Messages on
Twitter. J Med Internet Res, 16(10), e237. https://doi.org/10.2196/jmir.3765
2 Oct 2018 @pangpatrick

23. Our Plan
Collaboration with the University of Macau (~AUD$25k grant)
Now we have crawled 8 million (and growing) Weibo messages from their website
Research Questions:
Digital Health
• What are the composition of health messages on the Weibo platform?
• For health, how is the use of social media in China different?
Computer Science
• How to identify (and categorise) the health messages on Weibo?
– Challenges: Chinese NLP & Only very few are health-related (~0.5%-1%) & Short text
232 Oct 2018 @pangpatrick

24. Summary
24

25. Drive Policy
Changes
Contribute to
Academic
Knowledge
25
Consumer
Data
Consumer
Needs
Build a
System
Improve the
Healthcare
System
2 Oct 2018 @pangpatrick

26. Thank you
pat.pang@unimelb.edu.au
@pangpatrick
Dr Patrick Pang
School of Computing and Information Systems
Image Credit: Unsplash / The University of Melbourne