The Rise of the Expert Patient

Our model of distributing medical knowledge to the front line of healthcare delivery is broken.  Completely broken.

Through my work I’m fortunate to meet a lot a patients and carers, and to hear their often powerful and moving stories.

As I listen to these stories, a number of key themes run through many of them, particularly with respect to people’s experience with General Practitioners in Australia.  I want to explore one of these themes in this post.

It never ceases to amaze me how many patients are told one of the following by GPs:

  • “The condition you think you have doesn’t exist”
  • “I don’t treat that, you’ll need to go and see somebody who does”
  • “I only practice medicine based on evidence, and there isn’t any evidence for that”

 

We live in a digital world where there is an exponential explosion of medical knowledge.  In 2014 there were approximately 800,000 scholarly medical articles published around the world.  No health provider can keep up with even a fraction of this information, let alone process and synthesise it in a way that is relevant to patient’s needs  General Practitioners have the hardest job here, due to their need to be across the largest number of clinical areas.

So here’s the problem.  Our model of distributing medical knowledge to the front line of healthcare delivery is broken.  Completely broken.  But I don’t want to be too harsh towards health providers here.  It’s often not for lack of trying.  It is just no longer possible to keep up with rapidly evolving medical knowledge base.  A few hours of Continuing Professional Development and optional selective reading of journal articles just doesn’t cut it for keeping up with best practice.  Consequently, “best practice” for many GPs means “what I know”, or more accurately, “the knowledge that I already have and therefore trust”.

We’ve actually been at this point for a while, but very few people have realised it yet.  However, until we radically reinvent medical knowledge distribution processes to take advantage of digital technologies and clinical decision support, we’re not going to see improvements in this area.

If this all seems a little abstract, let me give you an example…

 

A few months ago, my wife’s former GP suggested that she have a genetic test for her MTHFR gene status, following a series of miscarriages (I’ll write more about this story later).  After receiving the results, the GP looked at them and said to my wife, “I’m sorry, but I don’t know what this means.  You’ll have to go and see a naturopath“.

I’ll just pause for a second and let that sink in.  “You’ll have to go and see a naturopath“.  Now my wife and I are not into naturopathic medicine.  It has its place, but it’s not something that we choose to be involved in.  Neither does her GP believe in it.  But her GP is aware that naturopaths have both interest in, and knowledge of, genomics, nutrigenomics and pharmacogenomics.  This is amazing to me.  You see, for most GPs, naturopathic medicine is in the same bucket as alternative medicine and “other things that we don’t understand or trust”.

But this is genomics.  This is leading edge science.  This is important.  And not only does my wife’s GP know very little about it, but she doesn’t appear to be very interested in learning.

However, my wife and I discovered a couple of incredibly useful Digital Health Communities where we could learn more for ourselves.  Firstly, mthfr.net.  This amazing resource gave us links to the latest clinical research on the relationship between MTHFR gene status and its role in the methylation cycle, and its role in multiple miscarriage (also known as recurrent pregnancy loss).  Second, LiveWello – a great resource for people interested in the link between genetics, nutrition, disease and medications.

So, as an engaged patient or caregiver learning about the role of MTHFR in the methylation cycle, its links to elevated homocysteine levels, and latest clinical research about its likely role in recurrent pregnancy loss, you’d think that would be a good thing, right?  Not so much.  The vast majority of health providers that we’ve dealt with, including all GPs, have dismissed anything that we’ve learned out of hand.  They don’t want to know.  It can’t be credible because they don’t know anything about it themselves, and because we’re not doctors.

But this isn’t some Facebook opinion forum.  We’re talking about synthesis of the latest clinical research.

 

This raises a number of issues…

When patients are told by doctors that their knowledge isn’t valid then they gather together.  We’re seeing this time and again with some of the internet’s better Digital Health Communities.  It’s what I call “the rise of the expert patient”.

Firstly, hopefully the story above shows a practical example of the problem of distributing the latest medical knowledge to the front line of healthcare.

Second, it shows the changing nature of the role of GPs.  Yes, that’s right, our GP’s role is changing and needs to change even further.  I don’t expect our GP to have all the answers.  But  I do expect them to be open minded to the fact that there could be knowledge that they don’t have that is still true.  I want them to stop arrogantly assuming that they know everything and that I know nothing.  I want them to act as the orchestrator of the process of finding the right answers, not to have all the right answers in their head.  I want them to consider and weigh our knowledge as well as their own, and not to dismiss my views out of hand.

Third, it pushes me away as a patient.  When patients are told by doctors that their knowledge isn’t valid then they gather together.  We’re seeing this time and again with some of the internet’s better Digital Health Communities.  It’s what I call “the rise of the expert patient“.  Sick of being told that they don’t know what they are talking about and couldn’t possibly understand, patients gather together to discuss, learn and synthesise the latest knowledge.  mthfr.net, LiveWello and PatientsLikeMe are great examples of this.

What we’re seeing here is a deep fragmentation of the health system.  A fracturing of the relationship between doctors and engaged patients.  A schism between two parties who both think they are in control.  Now, don’t get me wrong, this is from an ideal.  As an “expert patient” I’d rather not be in opposition to some of my health providers – I’d rather work in partnership.  But what choice do I have?  Some of them are refusing to consider the latest medical knowledge…

 

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