Widening Access to Online Health Education for Lung Cancer: A Feasibility Study Julia Mueller 1,2, Alan Davies 1, Simon Harper 1, Caroline Jay 1, Chris Todd 2 1 School of Computer Science 2 School of Nursing, Midwifery and Social Work

Health education Lung cancer and health education  40,000 deaths per year in the UK  Delays to diagnosis  People often delay for several months 2

Lung cancer and accessibility People with lung cancer tend to: be older have low socio-economic status have low education levels and low health literacy This means that: less likely to access (online) health information poor symptom recognition delays to diagnosis Less chance of survival 3 “ Web Accessibility encompasses all users in all circumstances and their ability to access a website and the information that is provided by the website. ”

Optimistic bias (“It won’t happen to me”) Optimistic bias (“It won’t happen to me”) Beliefs, attitudes (e.g. fear, fatalistic beliefs…) Beliefs, attitudes (e.g. fear, fatalistic beliefs…) Medical factors (no symptoms as early stages, rapid tumour growth…) Medical factors (no symptoms as early stages, rapid tumour growth…) Healthcare professional and healthcare system delay Delays to diagnosis 4 Symptoms Seeking medical help Awareness, knowledge Outside of our scope / control Amenable to change

Optimistic bias (“It won’t happen to me”) Optimistic bias (“It won’t happen to me”) Beliefs, attitudes (e.g. fear, fatalistic beliefs…) Beliefs, attitudes (e.g. fear, fatalistic beliefs…) Medical factors (no symptoms as early stages, rapid tumour growth…) Medical factors (no symptoms as early stages, rapid tumour growth…) Healthcare professional and Healthcare system delay Delays to diagnosis 5 Symptoms Seeking medical help Awareness, knowledge Outside of our scope / control Psychological theory Information personalization

Aims  Can we use the Web to encourage early help-seeking for lung cancer symptoms?  How effective are information personalization and theory-based components? 6

When2Go tool 7 Advertisement via Ad Words: lung cancer symptoms, persistent cough, breathlessness etc. Advertisement via Ad Words: lung cancer symptoms, persistent cough, breathlessness etc.

8 Information personalization User inputs information about symptoms and risk factors The tool provides detailed information on these symptoms (what to look for, when to seek help) The tool outputs a summary, detailing all symptoms, risk factors, and whether medical advice should be sought Based on UK clinical guidelines

Theory of Planned Behaviour 9 Attitudes towards the behaviour Perceived social norms Perceived behavioural control IntentionBehaviour Ajzen, (1985) Actual Behavioural Control

Example: Attitude: “ You shouldn’t see a doctor for a cough because it will waste the doctor’s time. ” “ If lung cancer is caught early, we can do more to treat it. So you should see your doctor with any symptoms that persist for 3 weeks or longer. ” 10 Theory components Yvonne Summers, Consultant Medical Oncologist

Evaluating the tool: The feasibility study 11 Theory only Personalization only Users enter the Homepage and are informed about the study Post-intervention survey, including ‘intention to seek help’ When2Go: Theory + Personalization Typical lung cancer website

Group differences 12 n = 17n = 14n = 17n = 37 Lowest intention to seek help Doesn’t include theory components p = 0.01

Website usage  Page exits: Where do users leave our website? 13 More exits when personalized (p < 0.001) More exits when not personalized (p < 0.001) Personalization plays a role in user engagement

Conclusions  Online health information can play an important role in health education and patient decision-making  Health websites can be improved by Incorporating theory-based components Information personalisation  More data is needed to achieve sufficient statistical power 14

Thank you! Questions? Julia Mueller when2go-study.co.uk

Website usage 16 People who are worried about lung cancer: n = 666 (55.5%) People with symptoms related to lung cancer: n = 534 (44.5%) TermClicks Lung cancer341 Lung cancer symptoms238 Lung cancer symptom82 Lung cancer diagnosis5 Coughing up blood199 chest pain94 persistent cough91 Blood in phlegm63 Cough up blood48 chest pains39

Are we engaging the target population? 17 Age distribution

Are we engaging the target population? Educational level 18 variety of educational backgrounds 34% report levels below school leaving qualification variety of educational backgrounds 34% report levels below school leaving qualification

Theory of Planned Behaviour 19 Ajzen I. From intention to actions: A theory of planned behaviour. Action-control: From cognition to behavior. Heidelberg: Springer; p. 11–39. Attitudes towards the behaviour Subjective norm Perceived behavioural control Intention Behaviour Actual Behavioural Control

Information personalization Information is tailored to unique characteristics of the user Enhanced actual + perceived relevance Increased impact on decision- making 20

Are we engaging the target population? 21

Website usage 22

Lung cancer and barriers to information Aging o Less familiar with technology o Less likely to access (health) information online o Different search and retrieval strategies than younger adults o Age-related impairments, e.g. vision, dexterity, cognitive abilities Low education levels and low socio-economic status o Less likely to access (health) information online o Low health literacy o Fearful / fatalistic beliefs 23 Low likelihood of searching for, and finding, health information Low likelihood of engaging with health services

Developing an intervention to target patient delay 24

25 p = 0.11 n = 17 n = 37

26 Medical help-seeking appropriate in 98.5%

Current symptom checker tools 27

Does our tool work for the high risk group? Age and education level o Age was not sig. associated with intention (r = 0.14, p >0.05) o Education level was sig. negatively associated with intention (r = -0.49, p < 0.01) 28

Lung cancer and accessibility Apart from users with disabilities, there are a variety of groups who experience barriers to Web access E.g. aging, education level, income … 29 “ Web Accessibility encompasses all users in all circumstances and their ability to access a website and the information that is provided by the website. 1 ” 1

When2Go tool 30 Developed using the Python Flask framework, a micro- framework based on the Werkzeug WSGI toolkit and the Jinja2 template engine.

When2Go tool 31 Personalised symptom information

When2Go tool: Personalized feedback 32 Targeting behavioural beliefs and attitudes

Current online lung cancer information 33

Health education and the Web Approx. 35% of the population have gone online to self-diagnose Can we harness this source to target barriers to health information? 34

Information personalisation 35

Information personalisation 36 Enhancing perceived + actual personal relevance Increased impact on behaviour

Theory-based components 37 Targeting behavioural beliefs and attitudes

Aims  Can we use the Web to encourage early help-seeking for lung cancer symptoms?  How effective are information personalization and theory-based components? 38

39 Information personalisation Cough for ≥ 3 weeks, Age above 40 Ex-smoker Cough for ≥ 3 weeks, Age above 40 Ex-smoker Cough < 3 weeks, Age above 40 Ex-smoker Cough < 3 weeks, Age above 40 Ex-smoker Cough for ≥ 3 weeks, Age less than 40 Non-smoker Cough for ≥ 3 weeks, Age less than 40 Non-smoker Seek medical advice If symptoms persist, doctor should refer for a chest X ray Seek medical advice If symptoms persist, doctor should refer for a chest X ray Monitor your symptoms. If they persist for ≥ 3 weeks, seek medical advice. Seek medical advice. Based on UK clinical guidelines

Highlights  Online health information can play an important role in health education and patient decision-making  Health websites can be improved by: Incorporating psychological theory Information personalization 40