We’re suspicious of strangers in the street but we’ll trust a stranger online – even when it comes to health advice.
A 2013 Pew Research Centre Report in 2013 showed 61% of all US adults used the Internet to find information about their health. Because of this, we see Google and the Mayo Clinic collaborating to provide more health information.
But Associate Professor Reeva Lederman, of the University of Melbourne’s Department of Computing and Information Systems, warns the Internet comes with its own hazards when used for health advice.
She says the vast amount of information from many different sources is appealing to patients who find their emotional needs or desire to self-manage unmet in the traditional doctor-patient interaction.
With huge growth in social networking in general, many people join online health communities to share a common concern for health, alleviate stress from a new diagnosis or obtain a second opinion, Associate Professor Lederman says.
In a 2014 study of online communities in collaboration with Associate Professor Shanton Chang and Dr Hanmei Fan, from the University of Melbourne, Associate Professor Lederman found users tended to employ unreliable indicators of trust when judging the reliability of an information source.
One participant said: “I sort of trust people with good grammar and who are more assertive … how they write, if it’s written well, punctuated, spelt correctly. Those people who seem well-educated I would think more trustworthy than those who do not.”
A recent example of this is Belle Gibson, who used social media to demonstrate how whole foods and alternative therapies healed her terminal cancer. Instead of medical qualifications or rigorous research, popular media suggests, the proof of Gibson’s trustworthiness was in her youthful appearance, charming personality and social media savviness.
“There’s not a lot of information to go by in the online world. Good communication and impression management become very important skills, and this was something Belle Gibson was very good at. She was confident in her presentation and seemed to have a large number of followers,” Associate Professor Lederman says.
Follower numbers in any online community are an important factor in creating trust among participants, as the consistency of online reports distributed across large numbers of participants create “crowd consensus”.
However, fostering a loyal online following was not enough to validate Ms Gibson’s incredible claims. Earlier this year sources revealed she was not a cancer patient, but a social media entrepreneur who endorsed unproven advice to vulnerable members of the community.
In the physical world, tone of voice, body language and automatic reactions complement our understanding of the person we communicate with. But online interactions typically allow only a fraction of these cues.
“Online, people have exceptional control over the messages they distribute. This is a good thing, except when the information is inappropriate or, at worst, unsupported by science,” says Associate Professor Lederman.
Yet even if online medical advice is supported by science, she says treatments must be tailored to meet the individual’s needs. Therapies that an online stranger claimed had worked for them might be completely inappropriate for someone else.
“Medicine needs to be personalised. Claims made online about the benefits of specific treatments for one patient don’t guarantee the appropriateness of that treatment for someone else, even if they have the same condition.”
Associate Professor Lederman said we each experience different symptoms and have different reactions to treatments. In a face-to-face scenario, human doctors can personalise their diagnosis, prognosis and therapies. But this level of personalisation is harder to achieve online.
“Advice on the Internet is not for you specifically. It is for a diverse audience of perhaps hundreds of thousands of people around the world. What works for an online stranger might not work for you.”
However, there is an expectation today that we can live our whole lives online.
“We want to use Google to find out what disease might be causing our symptoms and which community can support us through the journey,” she says.
Instead of discouraging people from using the Internet as a source of medical information, Associate Professor Lederman urges official organisations to provide users with reliable information. Yet she fears these organisations are falling short of the mark.
“The Internet is like the Wild West. It is a free place where we can’t monitor everything and every person. Some organisations like the Breast Cancer Network Australia are supported by funding bodies, but many communities start up spontaneously. Governments and health departments need to put up quality, evidenced advice and consumers need to know where to look for it.”
With no or few trained experts available to certify information in spontaneous communities, misleading medical advice is easily distributed. Associate Professor Lederman warns these dangers are exacerbated in the recent explosion of online health applications, where profit rather than patient wellbeing is the drawcard.
“Most are just commercial applications. They’re selling ‘health’ for commercial gain, and people will sell you anything on the app store,’’ Associate Professor Lederman says.
“They have a high attrition rate, so many are not used long enough to have a significant, positive impact. With few existing long-term trials of health apps, it is not yet possible to conclusively compare their effect with face-to-face care.
“Until results of validated trials are available, we recommend using online applications and health communities to empower patients and guide communication during personalised care, not as a replacement to a visit to your health practitioner.”