What do you do when your doctor tells you not to Google?
I’m putting together my regular monthly article for the Patient Empowerment Foundation, and this month I’m asking the question – what do you do when your doctor tells you not to Google?
This question was inspired by a recent Twitter conversation.
It led to a further conversation with Caroline and we would love to explore this topic some more by gathering your thoughts and insights.
It’s something I’ve been speaking and writing about for years – the benefits of digital networks of peer to peer knowledge and support – what Susannah Fox calls our “superpower”.
This is particularly true In the case of rare diseases, where doctors simply don’t have the answers to patients’ questions due to low patient numbers and, consequently, insufficient research into the disease, it is the patients themselves who are banding together to find the answers they need.
And yet we come up time and again against the blanket phrase “don’t google it” when it comes to trying to learn more about our health conditions. I know this is a topic that has been much discussed. We know the benefits but how do we start to change this persistent narrative in healthcare?
Over to you
- Have you ever been told not to google your cancer diagnosis or other health condition?
- How did you respond?
- Conversely, have you had a positive experience where your doctor suggested how you could use the internet to learn more about your diagnosis?
- Have you come across any best practice examples of how to use the internet as a tool to help you manage your health?
Are you a healthcare practitioner reading this? If so. what are your thoughts on this topic?
What can we do collectively to address this disconnect between the fact that patients WILL search online for health information and the reality that by and large patients are discouraged from doing so.
I’d love to hear your thoughts on this topic. Please share your comments below.
You might also like to read What’s the Influence of Patients’ Internet Health Information-Seeking Behaviour on the Patient-Physician Relationship?
Researching my prostate cancer diagnosis has become one of my coping mechanisms. Gaining knowledge helps reduce my fear and gives me a powerful sense of empowerment. I’ve been Googling ever since my diagnosis and must have read at least 45-50 books on prostate cancer. And writing is another coping mechanism. I ended up writing a book named “Prostate Cancer Strikes: Navigating the Storm.” And I’m proud to say that Prostate Cancer Foundation BC has endorsed my book and gives it away free to everyone newly diagnosed with prostate cancer all across Canada!
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Thank you Gogs and thank you for sending me a copy of your book which I look forward to reading
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We had one meaningful change to our behavior as a society during the pandemic and that was reaching out in new ways to community around the world, day or night. With Zoom we’re not only able to have dialogues in non-real time like with blog comments, Twitter, or other social networks. In real time with a physical and audio connection we’re now enjoying the communities with presence. We can see and feel what people are talking about, and we can listen too, enabling a tighter connection to people with similar or the same conditions as us. And I’ve noticed it makes a huge difference in the depth of discussion but also in creating deeper friendships allowing us to feel even less alone. I’m in a support group that meets every monday of women with MBC. About 20 – 25 people (way too many so we use break out rooms for those with HR+ mbc and those with other forms like triple negative or HER2+) and we talk about our fears, our relationships, our medical care, and what problems we’re having. Even after the zoom call is over, there’s follow up so that if someone has a question that needs more research or a recommendation of a cancer center or a potential clinical trial those are taken seriously and the questions are re-addressed on the next call if necessary. This huge shift is important and keeps us off of trying to self diagnose or do too much googling which can leave us with more questions than answers and even more fear than when we started our search. Google and web searches are good if we find science backed information and can use that to bring questions to our medical teams, but not for making decisions like: oh, I’ll stop this chemo treatment in lieu of coffee enemas and turkey tail mushrooms. I know that seems extreme but I’ve read blog posts where people have made these decisions to do so and to their disadvantage and possibly to the detriment of their health. There’s also Clubhouse, something I’ve recently been introduced to, that’s audio only. Sometimes I appreciate that so I don’t have to be fully dressed and feel like I need to look better than I feel on some days. Any community can arise out of Clubhouse and people are already on there looking for others like themselves. There are rooms for just about anything you can think of – nutrition and cancer, music and cancer, grief, etc. Those communities are also important and can lead to some very interesting discussions as well as direction to information and to treatments that one may not have known about before joining in on a conversation. Also, the all important fact that no one wants to feel alone or isolated in their situations gives us a feeling of connectedness, and this is something human beings need for our brains to work better. Depression and anxiety I think is at an all time high, as is in the US divorce and relationship challenges that could be avoided if there’s a way to vent our emotions to others who feel or have felt the same way. Best practices in dealing with seeing your significant other 24/7 in the age of the dual career household as well as parenting kids while trying to home school have layered on a level of stress no one could have been prepared to deal with… My first oncologist essentially told me to stay off google. I felt very uncomfortable with her suggestion that she was the de facto source of information on my disease. Of course, how can one not want to understand what the mortality rate is of their kind of metastatic disease and what percentages of people make it to five or 10 or even longer? How can we not be curious when there’s an extensive amount of research available at our fingertips. I dumped her early in my cancer journey, but my oncologist and palliative oncologist encouraged me to do my own research knowing I had already learned a great deal about my disease. I always come into an appointment with questions about new treatments, about clinical trials, about genetic counseling and possible mutations that have new drugs that work to eradicate or slow the progression of cancer if you have them. But they also had a list of good resources of information available to me out there so I wasn’t feeling around in the dark and vast universe of the internet. It’s so easy to get lost in the rabbit hole and come out more afraid then when I got there. So suggesting that we not do our own research, read the many books (or listen to audio books or podcasts) about our disease is not only ridiculously ignorant but also impossible. They’re not our police, they’re our partners in wellness. And as our partners it’s their responsibility to see to it that we have access to information. And if they do not want us to do our own research, as humans we’re curious beings, and we’ll do it anyway, we just won’t come to them when we have questions for fear of reprimand. Not the healthiest outcome either patient nor physician.
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Ilene this is wonderful – thank you so much for taking the time to leave such a comprehensive response to this question.
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My pleasure Marie. I think I may have written a post on it on my blog I’ll look back and dig it up. It was way back in 2016 or 2017. It’s actually nice to be able to say that. I never dreamed I’d make it to 2021!
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I have been told by some doctors not to Google any health-related questions I may have. This is a huge red flag to me, and I promptly start searching for a new doctor if I am told not to advocate for myself. Luckily, my current doctors encourage me to do my own research and they are open to hearing about what I find. Ultimately, there needs to be awareness on both sides that you can’t believe everything you read or everything you hear. Anecdotal evidence can be very valuable if it is reputable.
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Thanks so much for sharing your views on this topic – really appreciate hearing your perspective
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