by Carolyn Thomas ♥ @HeartSisters
Remember that unfortunate “Don’t Google It!“ campaign a few years back in which the Belgian government sought to warn patients against seeking health info online? Three of the (many) assumptions in that offensive campaign included:
- patients are stupid
- patients are not already online seeking input on all kinds of daily questions, big and small
- all patients behave the same way (e.g. like hysterical hypochondriacs)
Too bad the creators of this campaign weren’t familiar with the results of an interesting study that challenged those assumptions. .
As I like to point out, I would not buy a coffeemaker without first Googling coffeemakers to learn all I could about my options. So of course I’ll go online if I have questions about something far more important: my health. Most of us are already online, so telling us “Don’t Google It!” is patronizing – and just plain wrong-headed.
The participant population in this particular study included almost 1,000 baby boomers (people like me, born between 1946 and 1964) living in the U.K., the United States and New Zealand. Each person “had used the internet in the previous six months to search for and share health-related information.”
The findings suggest four distinct differences in how people of my generation use the health information that we find online in our ultimate decision-making.
Researchers identified four four distinct styles of decision-makers among those they studied:
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Collaborative decision-making: “Following this style, the patient uses online health information to collaborate with the health professional and work as an active partner in making decisions about treatment and management. Collaborators are influenced by online health information to seek professional help, to have diagnoses they have made confirmed by their health professional, and to find out more from the professionals about medical conditions, treatment, and/or management.”
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Autonomous decision-making: “This style applies to the patient who uses online health information to make autonomous decisions without involving the health professional.”
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Assertive decision-making: “The patient using this style draws on online information to assert his or her own preferences for treatment and management, and/or to oppose health professionals’ advice in decision-making. A question that arises here is whether the assertive decision-making style is impacted by having chronic health problems and the potential frustration associated with being persistently sick.”
- Passive decision-making: “Patients in the Passive segment characteristically are not influenced significantly by online health information to be either collaborative, autonomous, or assertive in their decision-making with health professionals. Instead, this group prefers to rely on the traditional paternalistic patient-physician relationship and leave decision-making to their health professionals.”
Researchers also identified combinations of these four categories, specifically Assertive-Collaborators and Autonomous-Collaborators, which combined elements of more than one single decision-making style.
Before I read about this research, I may have made some assumptions of my own. For example, I may have guessed that many doctors find the Passive decision-makers easier to deal with. In other words, the “good patient“.
But here’s what I learned: of all four types of patients studied, those in the Passive group (over 27 per cent of the total number of participants) described as “predominantly First Wave baby boomers from the U.K.” ) tend to visit their health professionals the least frequently of all four segments. As lead author Dr. Mary Anne Fitzpatrick of New Zealand’s University of Waikato explained:
“Coupled with the negligible impact of internet-accessed health information, the low number of health professional visits means there is the risk that serious conditions are undetected.
“Given the low influence of online health information on the decision-making of this sizeable segment, policy makers and health professionals urgently need to identify those communication channels that are most effective in reaching and supporting these patients, and future research should establish the interaction and communication preferences of this segment.”
Over all, researchers found that most patients (72.8 per cent) show “significant collaboration in their decision-making with health care professionals.”
Previous research confirms that online health information can empower patients to be more active participants in decision-making with their health professionals. Such studies show that internet-informed patients can possess both knowledge and treatment preferences before they interact with practitioners, making them better equipped to take a fuller and more participatory role in decision making.
As Dr. Fitzpatrick concluded:
“This study looked at the behaviour and decision-making from the patient’s perspective. One very interesting avenue for future research is to investigate how health professionals perceive different patient segments, and how professional behaviours impact such segments.”
Meanwhile, my own request of all physicians:
Doctors, you know that your patients are already online, so please don’t tell them NOT to go there.
Instead, create a prescription pad-like list of credible, jargon-free websites/books with basic health information that you would feel comfortable recommending. Share this list of approved resources with your patients. For example, Mayo Clinic, Up-To-Date, CardioSmart and the Heart and Stroke Foundation are some good sites to start with for heart patients. Even people who are not experienced in internet searching can quickly learn how to navigate these patient-friendly sites.
Stress to your patients that they must become savvy consumers when it comes to online health information, and must learn the difference between truth and trash out there.
And most importantly, Doctors: please don’t abdicate your traditional role as educators.
♥
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M.A. FitzPatrick et al. “A Typology of Patients Based on Decision-Making Styles”. J Med Internet Res. 2019 Nov; 21(11): e15332.
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de Rosis S, Barsanti S. “Patient satisfaction, e-health and the evolution of the patient-general practitioner relationship”. Health Policy. 2016 Nov;120(11):1279–92.
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Q: Which is generally your preferred medical decision-making style?
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NOTE FROM CAROLYN: I wrote much more about how heart patients make informed decisions in my book, “A Woman’s Guide to Living with Heart Disease”. You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 20% off the list price).
Heart Sisters 
This blog is very interesting, It suggests good tips for online info for healthier decisions. Thanks for this remarkable post.
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I’m clearly in the Collaborator camp and lucky to have a partnership relationship with my primary doc, cardiologist and oncologist. Not so much the dermatologist — they see, they treat, they cut.
I usually use the Mayo Clinic site and government sites like the CDC.
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With your primary, cardio and oncologist as partners, that’s a true hat trick, Sara… I too recommend the Mayo Clinic site for all kinds of basic medical info, including their very comprehensive and trustworthy alphabetical listing of almost every diagnosis (including a number of general and specific types of heart disease).
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I am Assertive-Collaborative, or I am whenever docs don’t close their ears and shut me down. If I hadn’t done my own research and pushed, I would never have my multiple unusual diagnoses, or treatments, and probably would be dead by now.
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Hi Kathleen – I too thought it was telling that the researchers in this study also acknowledged “the potential frustration associated with being persistently sick.” That kind of relentless frustration can affect event the most pleasant personality….
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Hi Kathleen…If I had not met people in a support forum online, with my same diagnosis, Hypertrophic Cardiomyopathy, I would never have sought a second opinion at Mayo Clinic and had life saving cardiac surgery…I would have remained a cardiac invalid. I am so glad for the internet.
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What a great study! Thank you for posting it.
I am generally a collaborator but have no fear of autonomous and assertive as the situation requires.
Of course being an RN I have a knowledge base that allows me to venture where others might hesitate. I have also found that being primary Medical POA for my son with mental health issues, and my best friend with stage 4 breast cancer puts me in contact with a whole different set of health professionals I would not have chosen for myself!
My style may be Collaborative and theirs may be Paternalistic so I must figure out how to “Dance with the devil” and make sure my son and my friend get the best care possible. Some days are more challenging than others.
I would love to see a follow up study of the 4 styles and the morbidity, mortality and hospital admission rates for each style!!!
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Thanks for this, Jill. The reality for many of us, of course (medical professionals or not) is that during a medical crisis, many of us don’t get to “choose for ourselves” who the health professionals are who will be diagnosing or treating us. This is especially the reality in Emergency medicine, where which specialists happens to be on call is typically the one who sees you.
When an interventional cardiologist wrote a few years ago about his observation that some cardiologists will “never be good” at doing a radial (wrist) access angioplasty, I asked him “How are most patients supposed to know who is or is not ‘good’ at doing this invasive procedure?” His glib reply: “Ask a cardiac nurse!”
But how many of us know a cardiac nurse personally while we’re being wheeled into the ER – particularly one who can assess every specialist’s roles and outcomes?
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I had my first “wrist” Cardiac Cath last April. It was marvelous compared to the groin approach!! My cardiologist Dr R, picked the Cath specialist. Over the years, after my need for re-do heart surgery, I have made myself a patient Dr R does NOT want to disappoint, so I trusted his choice.
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Very interesting study, Carolyn. I tend to be a collaborative decision-maker while my husband is more of a passive decision-maker.
Some of that may be due to his being ten years older than me. Confounding factors come from our families of origin. We both came from paternalistic families but only in my family was questioning and discussion encouraged.
A major factor is that my father was a physician. As a child I met many of his colleagues, who were of course very nice to me. As I grew up, my knowledge of doctors was that they were interesting, kind people who had a genuine interest in others.
I relate to doctors as individuals that I am consulting because they have knowledge that can help me. This is the same way I would relate to any professional
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Such interesting points, Jenn – both our family-of-origin experiences (and the era we grew up in) does play a profoundly important role in how we respond to current authority figures. I grew up with a similar regard for physicians, thanks largely to my parents’ near-veneration of our longtime family physician, Dr. Zaritsky. I used to joke that Dr. Z. occupied a place of honour within our family second only to Pope Pius XII (a framed photo of whom hung over our kitchen table!)
But much later in life, getting misdiagnosed in mid-MI despite textbook symtpms, while also having a longtime GP who had decided to expand her practice into the Botox injection business woke me up: I too consult with physicians who are knowledgeable in a specific field – but just as in any profession, there are those who earn trust and those who have not.
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