I regularly see patients who, rather sheepishly, tell me that they have ‘googled’ their symptoms to try and work out what might be wrong with them. They often add something like ‘I know shouldn’t have”. Finding useful health advice on the internet can be a bit of a lottery, but I personally have no issue with patients googling their symptoms and looking for information. My experience in practice tells me that they will very often find something that is of genuine use to them and their health practitioner (if open-minded enough).
The rise of the internet has seen medical and research information become much more available to individuals. And boy have people seized the opportunity to access this information in an effort to understand better how to overcome illness and enhance health. Not uncommonly I see patients who know far more about some health matter than I. I like to embrace this, personally, as it usually means that person is likely to progress faster down the path to health than if they hadn’t bothered to or been able to educate themselves. And I have generally have no issue at all (quite the reverse, actually) with a patient educating me about some health matter.
Another trend I’ve noticed is just how much people have been able to tap into the collective experiences and wisdom of others. I see this quite commonly in diabetics, for instance. I’ve seen quite a few diabetics who have found controlling their blood sugar levels difficult on the low-fat, high carbohydrate diet often recommended to diabetics (go figure!). Many of these diabetics go looking for or stumble across a forum like this one where individuals can swap stories and idea relating to low-carbohydrate eating.
Some will feel sufficiently convinced to give this type of eating a try and will usually see a significant improvement in their blood sugar control and a reduction in medication requirement as a result. Some will run the idea past their doctor or diabetologist first, but some will not. In effect, those in the latter group have made a self-directed decision about their diet and healthcare based on the experiences and advice of, not healthcare professionals, but ‘ordinary’ individuals with experiences and ideas to share.
I’ve heard many healthcare practitioners express horror that this sort of thing going on. For example, dieticians or dietician bodies very often warn about the supposed perils of taking ‘a whole food group’ (e.g. starchy carbs) out of the diet. The idea here is that somehow such a person is being reckless and risking a diet deficient in key nutrients. In my view, this person is unlikely to be exhibiting any recklessness at all, and there’s nothing found in these starchy carbs that cannot be found more healthily (in my opinion) elsewhere in the diet. And let’s not forget that this particular dietary change is often accompanied by an improvement in not just blood sugar control, but improvements in a range of disease markers.
I was motivated to write about this on reading a recent piece form the deputy editor of the British Medical Journal . Entitled ‘Patient Powered Health’, this piece explores the notion that the internet can be a source of useful information from the lay public that can inform patients and help direct their care in ways that supersede conventional medical care.
The same edition of the journal contains an account from someone – Dave deBronkart – who was diagnosed with advanced kidney cancer, and who’s doctor suggested he take a look at acor.org, an online resource for individuals with various forms of cancer. deBronkart posted a message on the site, and within two hours he: “got facts and practical advice that to this day don’t exist in any journal article or establishment website,” including information about the best treatments and side effects from those who had already experienced them.
The editor’s piece goes on to say: “The internet and online communities are often rightly criticised as sources of misinformation and bad advice. But deBronkart’s story illustrates the contribution that informed and engaged patients can make to the complexities of medicine.” deBronkart is quoted as saying: “The value delivered by skilled clinicians is still there, but now we can see that it’s no longer the only source,” he writes. “Please, let patients help improve healthcare. Let patients help steer our decisions, strategic and practical. Let patients help define what value in medicine is.”
The BMJ has a long-running ‘Patient’s Journey’ series which is partly designed to achieve this end (letting patients help define value and quality in medicine is). The BMJ’s patient editor, Peter Lapsley, adds: “There is no privileged vantage point from which to decide who is right and who is wrong.”
That’s right, I think. We doctors no longer have a monopoly in health information and advice. Patients now have the potential to learn much from the experiences and wisdom of other patients. I don’t think we doctors should be threatened by this: I think we should embrace it, partly because it can benefit patients, and partly because our patient’s experiences and ideas can benefit we doctors too.
1. Jackson T. Patient powered health. BMJ 2013;346:f2255