Getting help from Doctor Google

By: Julia Mueller, PhD candidate at the University of Manchester
Supervisors: Professor Chris Todd, Dr Caroline Jay, Dr Simon Harper

 

George has been coughing for months. When people point it out, he dismisses their concerns. “It’s just me getting older. And all those years I smoked!” But over time, he becomes more concerned. Finally, he turns to the Internet. Online, he finds a confusing, overwhelming mass of information. He can’t figure out which information is relevant. “If I go to the doctor with a tickly cough, he’ll think I’m trying to waste his time,” he reasons. So he leaves it at that.

A month later, George coughs up some blood. Worried, he finally goes to his GP, who refers him for a chest x-ray and a CT scan of his lungs, which confirms: Lung cancer.

The story outlined above is based on real-life experiences of patients with lung cancer: In a survey and interview study with recently diagnosed lung cancer patients, we asked patients how they first noticed symptoms, and what made them decide to see a doctor [1]. In particular, we were interested in whether they used the internet to appraise symptoms. The Internet has become the number one go-to resource for lay health information, and presents a cost-effective means to disseminate health information to the public. Yet, research on Internet-use for appraising symptoms is scarce, and methodologically limited [2].

Previous studies have shown that people with lung cancer often wait for several months before presenting their symptoms to a doctor [3,4]. Most people are unaware of symptoms, some are afraid of what the doctor will find. Delays to diagnosis can reduce patients’ chances of survival [3–5].

Several people in our study said they looked up their symptoms online to decide whether they should seek medical help, or whether they should urge their GPs for further tests. We concluded that the Internet has the potential to impact on the timing of help-seeking in lung cancer, and could therefore help reduce delays to diagnosis. But problems like overwhelming amounts of information persisted.

We therefore created an online intervention designed specifically to encourage people with relevant symptoms to seek help promptly. What sets our intervention apart from a normal health website is that it is tailored rather than static: Users input information about themselves such as their age, smoking status, and type, duration and intensity of symptoms. Our intervention then outputs select, personalised information, rather than overwhelming users with large amounts of information.

Moreover, based on previous studies, we looked at beliefs people tend to hold about help-seeking for lung cancer symptoms, such as “if I seek help for a cough, the doctor will think I’m a time-waster.” We then set out to target these with specific behaviour-change techniques, based on psychological theory. For example, our website presents a quote of a consultant for oncology, reassuring users that doctors endorse help-seeking for a persistent cough.

The website culminates in a summary of the data inputted by the user, and a recommendation of whether help should be sought. It also tells users if their GP should refer them for an urgent chest x-ray based on clinical guidelines by the National Institute for Health and Clinical Excellence [6].

Currently, we are testing this intervention in an online randomised trial (at www.when2go-study.co.uk). We measure users’ intention to seek medical help before and after receiving information, as well as reported help-seeking at a 3-week follow-up.

Our aim is to test whether information personalisation, and presence of behaviour-change techniques, has an effect on users’ intentions.  If either of these techniques can make a significant change in users’ help-seeking behaviour, this can have important implications for how health websites should present information in order to facilitate earlier diagnoses.

However – as most people who have ever looked up their symptoms online know – there are also some risks involved. How do we know whether we have struck the right balance between facilitating earlier diagnosis, and causing healthy people unnecessary worry? Are we helping people who are unwell, or fostering “cyberchondria”?

References:

1. Mueller J, Jay C, Harper S, Todd C. The role of Web-based health information in help-seeking behaviour prior to a diagnosis of lung cancer: A mixed-methods study. J Med Internet Res 2017;
2. Mueller J, Jay C, Harper S, Davies A, Vega J, Todd C. Web use for pre-diagnosis symptom appraisal for physical health conditions: A systematic review. J Med Internet Res 2017;
3. Corner J, Hopkinson J, Roffe L. Experience of health changes and reasons for delay in seeking care: a UK study of the months prior to the diagnosis of lung cancer. Soc Sci Med [Internet] 2005/09/20. 2006;62(6):1381–1391. Available from: http://ac.els-cdn.com/S0277953605004296/1-s2.0-S0277953605004296-main.pdf?_tid=91fc9082-3b2a-11e3-9dfd-00000aacb361&acdnat=1382454157_6228cea45616b7216c958160f3c24192 PMID: 16168544
4. Corner J, Hopkinson J, Fitzsimmons D, Barclay S, Muers M. Is late diagnosis of lung cancer inevitable? Interview study of patients’ recollections of symptoms before diagnosis. Thorax [Internet] 2005 Apr 1 [cited 2015 Aug 27];60(4):314–9. Available from: http://thorax.bmj.com/content/60/4/314 PMID: 15790987
5. Tod AM, Craven J, Allmark P. Diagnostic delay in lung cancer: a qualitative study. J Adv Nurs [Internet] 2008 Feb [cited 2015 Aug 6];61(3):336–43. Available from: http://www.ncbi.nlm.nih.gov/pubmed/18197868 PMID: 18197868
6. National Institute for Health and Care Excellence. Suspected cancer: recognition and referral. National Collaborating Centre for Cancer (UK); 2015.

BIO: Julia Mueller is an MRC-funded cross-disciplinary PhD candidate at the University of Manchester. Her PhD project spans Health Sciences and Computer Science, and examines the role of the Web in help-seeking behaviour among people worried about lung cancer symptoms. She also works on various public health projects at the Division of Population Health, Health Services Research & Primary Care, University of Manchester.

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