Is the guitarr shop open on Sunday? How do you change the tier on the bike? What’s a good recipy for waffles? Where’s the best vegetarian restaurant in Nice?
We all go online, constantly, to find out information we need. It can be as simple as finding opening hours, or to find instructions videos for doing something complex we’ve never tried before. Either way, there are boundless resources online to help us – some good, some not so good, but most of the time we manage to find out the things we want. It’s a huge difference from just 10-15 years ago, especially with the ever present smart phones. One might argue that life is a bit more boring when during any dinner conversation the answer to what year that movie actually premiered is only a few clicks away – but overall the benefits clearly overcomes any drawbacks.
There is one area, however, where searching for information is still controversial. Your health.
So controversial in fact, there have been national campaigns to try to stop people from googling their symptoms, and the topic is frequently discussed by health care professionals (and health informaticians) world wide. The main point being made that we are all just a few search terms away from convincing ourselves that we are dying from whatever rare and improbable condition we find in the dark corners of the web.
In February, a humouristic song was published on a leading journal for healthcare professionals in Sweden, and it stirred quite a discussion online, both at the website itself and on other forums such as facebook and twitter.
For me, personally, the song triggered many thoughts. I had spent the past weeks searching for information regarding my fathers cancer diagnosis and had learned so much more from the online sources (inluding the patient forum Smart Patients) than from the brief meetings with health care professionals. Despite their best efforts to explain everything, you are pressed for time, there are many practical issues to discuss, and frankly – your in chock and stressed out at every single meeting, faced with more and more (often bad) news that you have to process. It’s not until you’re back at home again that all those follow-up questions pops up – and then you have noone to turn to. Being in this position in life, I was provoced by the sentiment of the song, which to me seemed to mock the very human drive to find out as much as possible about what is going on with our health. So, what do we know about searching for health related information online?
Well, first of all – not everyone wants to! It’s a personal choice related to your coping strategies. Miller talks about “monitoring” versus “blunting” styles of coping with health issues and information relating to them :
The research indicates that although some patients try to avoid or minimize obtaining stressful medical information, others seem to search for it and are highly sensitive to it. In the research on these processes, two basic modes of coping with medical stressors need to be considered. The first mode, monitoring (attention to, scanning for, and amplification of threatening cues), involves the extent to which individuals are alert for and sensitized to the negative, potentially painful, or dangerous aspects of information and experience. The second mode, blunting (avoidance of threatening cues), involves the extent to which individuals distract themselves from such information.
This resonates very strongly with me, and it also explains why we take such different approaches to information searching. I immediately want to find out as much as possible about my condition (or the ones my loved ones suffer from) – typical monitoring behaviour, whereas other members of my family choose to not search for information at all. Both are valid coping strategies (with benefits and drawbacks) – the important conclusion Miller makes is that healthcare needs to acknowledge the differences and adapt support to the individual patient.
Secondly, MANY people search for information online, for example, in the US, 51% of adults living with chronic conditions go online to find health-related information . So is this good or bad? Well, a recent study from Australia indicates that a large number of online health information seekers have (at least some) difficulty in finding information and would like more guidance and support . But is it dangerous? Finding studies that actually show patients coming to harm based on misleading information online and self-diagnosing is quite difficult. Many publications discuss the potential dangers of self-diagnosing, misleading information and poor health literacy, but few actually have evidence (please share resources in the comments below this post – I would love to have more references to this topic!). A study from 2003 e.g. states that parents “overwhelmingly positive impression of online health information suggests parents are unaware of the dangers of encountering misleading sources, an issue of special concern when considering the amount of influence this information carries.” . The authors continue to call for more action from healthcare professionals to guide patients/family carers to “accurate online sources”. From my personal perspective, this is a very paternalistic perspective. I’m overall positive about the information I find online too – that doesn’t mean I believe ALL the information I find is correct – being a critical information seeker is essential – and these are the kind of skills everyone needs to learn, whether we’re looking for financial, political or health related advice online. However, I do agree that healthcare can take a much more active role in guiding and discussing online health information – please refer to good resources as a complement to the paper-based information handed out today!
So, my last remark in this post (but probably not on this topic – I’m bound to return to it later on), is KEEP GOOGLING! Don’t feel like your doing something wrong when you’re looking for health related information online – being well-informed and knowledgeable can on the contrary be essential! But keep a critical mindset. What is the source of this information? Who is behind it (and what do they have to gain from spreading this information/advice)? Are there other sources that can confirm or dispute the information? What consequences can acting on this information/advice lead to?
 Miller SM. Monitoring versus blunting styles of coping with cancer influence the information patients want and need about their disease. Implications for cancer screening and management. Cancer. 2005;76:167–177
 Fox S, Purcell K (2010) Chronic Disease and the Internet.
 Kenneth Lee, Kreshnik Hoti, Jeffery David Hughes, and Lynne M Emmerton, Consumer Use of “Dr Google”: A Survey on Health Information-Seeking Behaviors and Navigational Needs. J Med Internet Res. 2015 Dec; 17(12): e288.
 Wagahta Semere, Hratch L. Karamanoukian, Marc Levitt, Teresa Edwards, Monica Murero, Giuseppe D’Ancona, Harry W. Donias, Philip L. Glick. A pediatric surgery study: Parent usage of the internet for medical information. Journal of Pediatric Surgery, Volume 38, Issue 4, April 2003, Pages 560–564
[post 19 in the #blogg100 challenge]