A point of view can be a dangerous luxury when substituted for insight and understanding.
Canadian Communications Professor
When it comes to patients accessing information on the internet, numerous medical
professional seem to suffer paranoia. To them the internet is awash with poor quality
websites, websites that are biased, websites that are ill-informed, run by charlatans and
not to be trusted.
But how many websites have they actually looked at? And on what basis do they judge
and reach their conclusions?
I think the truth is nearer to the fact that they dislike the informed patient, or having to
explain to a patient who arrives for a consultation, having done their research, why
something is or is not the case. That takes time...time they often do not have.
Perhaps if the overall "ten minute appointment" system were changed, doctors could
deal with the inevitable - patients are becoming more and more informed, though not
always better informed. More does not equal better and less is more.
It’s true that some patients arrive having reached a false conclusion or self-diagnosis based on their research, they may have concluded they have a brain tumour when in fact they are suffering frequent headaches as a result of consuming too much alcohol regularly. It’s true that they miss the nuances which a doctor should be trained to spot.
But to blanket condemn websites is to fail to realise we are in this world of internet research and it is not about banning it but how best to navigate it – both the patient and the doctor navigating with their patient.
Breadth of website research
I took to extensive research on the internet when my sister was diagnosed with lung cancer; we were getting little from the NHS and its medical staff, we were often left in the dark, and so had to inform ourselves quickly and thoroughly…about cancer generally, lung cancer specifically, the stages, the possible treatments, the upsides and downsides. But if we had relied on the NHS and official websites alone, we would have been denied a major tranche of information – of nutrition, of doctors making breakthroughs, of approaches found in Ayurvedic medicine, Traditional Chinese Medicine, Complimentary and Alternative Medicine, Integrative Medicine, Energy Medicine, Functional Medicine, Metaphysics, approaches such as Mistletoe Therapy, and advances found in Italy in Germany.
No – we were confined within the NHS to the usual – the limitations of radiation, drugs (chemotherapeutic drugs and drugs to cope with the side effects of same) and surgery.
The trouble with official sites is that they are often constrained to the bio-medical model, they lack vision and hope.
Surely the time has come when we draw from the best that all modalities have to offer?
Trusting a website
I had to learn which websites to trust – often on appearance, limited content, poor writing, bias, and intuition and on which I could come to rely.
Today, many eminent medical practitioners and medical journalists, at great personal cost, offer extensive video programmes on specific topics, where they interview experts in their chosen field, giving the latest in trials and treatments. Some of these can be biased, but for the most part I have found them eye-opening, if rather lacking in originality in presentation. But it is better than getting no information at all.
Not every person falls into the category of being unable to read a site or watch a video, adequately discern the information and make up their own mind. Not everyone automatically makes the worst doom-laden conclusion.
We need to get wise to the fact that information is now out there, and sure, some of it will be suspect …. but if you are not getting the information from official sources eg your doctor, then do your own research.
Trust your intuition and your judgement.
Become an expert in entering the best possible search key words . Work out what it is you want to know – specific information, about treatments, about support services etc eg
Mental health 5 3,100,000 search engine results
Mental health in Scotland 3,670,000
Mental health treatment Edinburgh 3,010,000
Mental health support services in Edinburgh 2,410,000
Is the website biased? Some may believe in one particular medical model, or a specific product, or an exclusively natural or drug approach to treatment. Know what you want.
Who may be paying for the website? Are they controlling the content and approach?
Is it in to over-selling its own product? In which case it will probably present information sufficient to its own ends.
Is it easy to understand? Someone who really knows their “stuff” and who sincerely wants to communicate to others will take time to present information in a clear, logical manner.
Does it seem to be in the pocket of big-pharma or others with a vested interest? In which case it may be less than impartial.
If an official site – ones usually ending in .edu, .gov, .org – or produced by scientific journals or medical journals, is it confined to conventional medicine, is it open to other medical modalities?
How comprehensive do you feel the information is? This understanding may come in time as you compare sites.
Do not reach definitive conclusions ie this means that. Keep researching and you may find many nuances.
Plan for your next medical consultation.
Do not shower your doctor with all you have learned and immediately make them defensive thinking that you think their approach to be worthless.
Prepare brief notes of what you want to say and what response you seek. Do not present your practitioner with a basketful of documents.
See the consultation as a time to co-operate, share knowledge, share hunches and senses, and jf you don’t get a favourable response, use your intuition and senses again to decide whether it is appropriate to challenge or let go for now.
Keep your information clear, concise and as factual as possible.
Offer, “my present understanding is … and I wonder if …”
Remember, your practitioner only knows what they only know and you may have had the luxury of time to become more up-to-date. Be informed but do not self-diagnose.
The way in
There is no doubt that patients see the Internet as a major tool to learn about medical conditions, inform themselves, or read about the range of (conventional, alternative, and complimentary) treatments possible. Patients understand that knowledge is power. But it is how you use this knowledge that is crucial. There is a difference between using it to appear all knowledgeable and a means to work in collaboration with your doctor.
A doctor’s visit
Worst case: Your research leads to an unproductive discussion with your doctor on medically irrelevant topics and the entirety of the visit is spent by the doctor trying to pry you away from your firmly entrenched ideas and you insisting you are right. Time passes and you leave feeling unsatisfied, confused, unheard, and possibly attacked. No clear diagnosis is made, and no treatment plan is formulated. Your doctor will have his or her feelings too.
Best case: Your research leads to consideration of all possibilities … based on when did the signs and symptoms start, what was going on in your life at the time, have you any idea of what may have triggered the condition, has your research been extensive – not just focussed on one medical modality? Have you considered ideas your doctor may not have initially thought of. Having done your research, you are now able and plan to ask more insightful questions that spur a higher-level conversation amongst equals. You leave having played a more active role in your treatment, treated your doctor respectfully, and the doctor has maybe even learned something new or certainly has a newer insight into you.
Some tips and considerations to make your research-infused visit more like the best case.
1. Let it be as a doctor was trained to have it be. In medical school, doctors are taught how to structure a patient visit. It begins with open-ended questions and narrows to assessment and hopefully diagnosis and a treatment plan. This is how your doctor is trained to think and act. This is their comfort zone. To get the most out of your doctor’s considerable knowledge and training, start in their comfort zone and gradually move in to what you need. Doctor needs to ask the right questions and perhaps conduct a physical exam. You then introduce your research. If the doctor’s agenda takes over, be prepared to say, “That’s not why I am here.”
2. Use questions wisely. When the time comes to disclose your research, do not start with, “I found this on the internet.” Instead, use questions. “Before I came today I was looking online and felt I might have ….. What do you see that makes you think it is (or isn’t) …?” Or, “I’m aware I have been taking xx medication for quite some time and I experience no advantage as yet. Do you suppose we could possibly try this other medication?”
Your objective is not to achieve those “gotcha” moments. “See, I’ve found you out.” The objective is to reconcile what you’ve been reading on the Internet with how your doctor is able to and wants to treat you. Your questions should be aimed at uncovering the reason for the difference. Don’t leave without getting your questions answered…provided you have worked them out.
3. Be prepared to reveal your sources. Some sources are good, and some are bad. By citing your sources and bringing them to your appointment, your doctor can help both of you evaluate the source and the content simultaneously. One of the best ways to build rapport with your doctor is to show that you have taken the credibility of your sources seriously.
4. Don’t judge or feel let down if your doctor doesn’t know everything. It’s ok for your doctor to say, “I don’t know!” Hopefully they’ll follow up with, “I’ll find out” or encourage you to do so elsewhere. While some doctors may be more knowledgeable about or have a special interest in one topic or another, your doctor will be an exceptional learner. Make a plan to follow-up with your doctor if she needs more time to learn about the research you have done.
5. See your role as assisting the doctor, not in proving your expertise.
6. Expect a positive outcome yet realise it may not happen.
With knowledge does indeed come power, and with power comes the opportunity to use it strategically, wisely
and with integrity.