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CIS Seminar 2018-10-02


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

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CIS Seminar 2018-10-02

  1. 1. 1 Empowering Health Consumers by Understanding Their Needs Dr Patrick Pang •School of Computing and InformationSystems Dr Patrick Pang @pangpatrick School of Computing and Information Systems
  2. 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 2 Oct 2018 @pangpatrick
  3. 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 _statement_on_consumer_and_community_involvement_in_health_and_medical_research-accessible.pdf
  4. 4. 4 Source: Startup Health Insights, U.S. (2017) Source: Consumer Health Forum of Australia Source: Australian Institute of Health Welfare
  5. 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. 6. Engaging Consumers in Health Research 6
  7. 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. 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.
  9. 9. Supporting Women after Miscarriage 10
  10. 10. 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
  11. 11. 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
  12. 12. 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)
  13. 13. 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.
  14. 14. 2 Oct 2018 @pangpatrick 15
  15. 15. Australian’s Responses to #MyHealthRecord on Twitter 16
  16. 16. 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
  17. 17. 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
  18. 18. 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
  19. 19. Information Needs on Chinese Social Media 20
  20. 20. Rest of the World China China has a different “Internet” 2 Oct 2018 @pangpatrick 21 (
  21. 21. 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. 2 Oct 2018 @pangpatrick
  22. 22. 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
  23. 23. Summary 24
  24. 24. Drive Policy Changes Contribute to Academic Knowledge 25 Consumer Data Consumer Needs Build a System Improve the Healthcare System 2 Oct 2018 @pangpatrick
  25. 25. Thank you @pangpatrick Dr Patrick Pang School of Computing and Information Systems Image Credit: Unsplash / The University of Melbourne