MCSMN Blog

April 24, 2019

Experts By Experience Free E-Book Released

By Lee Aase, Director, Mayo Clinic Social Media Network

If You Were in my Shoes...Stories That Teach

Experts by Experience Cover

The online patient community, Mayo Clinic Connect, together with health care social network Inspire, have compiled in a free e-book a collection of patient stories — words of wisdom — published in the Experts by Experience series on the Mayo Clinic Social Media Network in 2018.

The intent of this e-book is to underscore the need for health communication and medical professionals to pay attention to the human experience — a patient’s journey, a caregiver’s perspective, a communicator’s knowledge — and to turn knowledge into action.

You will read stories about tribulations and triumphs with illness, about personal journeys and lessons learned, about feelings of isolation, frustration and how these challenges led to empowerment for some...and, if you read between the lines, you will notice how these stories can ignite conversations and inspire shared decision-making between patients and their health providers.

This compilation is described as “stories that teach” because patients and caregivers are educators in so many ways — they teach us to find meaning in the loss of health, and to explore the potential of healing medicine that is grounded in personal experience. For communication and medical professionals, these narratives hold a simple truth:

“If you want to understand a symptom, a disease, a diagnosis, start by understanding the patient."

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Tags: #PatientStories, Experts by Experience

Although I initially had some resistance to the word "expert", after reading these stories I have grown to like it einstead.

People (patients) are THE expert in their own experience.

Also, as we expand our digital engagement more and more every day – which I believe can have a tendency to drift us more and more to dehumanizing both physicians, nurses, staff and patients – many of these stories are able to counterbalance this drift ( interestingly via digital technology such as social media, digital communities, and ebooks).

Patient 1st person accounts of their experience are a must read for people who are in healthcare.

COMMENT
@matthewrehrl

Although I initially had some resistance to the word "expert", after reading these stories I have grown to like it einstead.

People (patients) are THE expert in their own experience.

Also, as we expand our digital engagement more and more every day – which I believe can have a tendency to drift us more and more to dehumanizing both physicians, nurses, staff and patients – many of these stories are able to counterbalance this drift ( interestingly via digital technology such as social media, digital communities, and ebooks).

Patient 1st person accounts of their experience are a must read for people who are in healthcare.

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I enjoyed your comment @matthewrehrl I am one of the writers in this and I, too, balked at the idea when I was approached with the 'expert' label. I accepted it once I thought through the idea of each patient's journey is as unique as they are so in a way each of us are an expert on our own journey.

COMMENT

I am a cancer research advocate and share my story frequently. As I read through a number of the expert patient stories last night I was shaking my head in agreement. They are powerful and important to share with healthcare professionals and industry leaders.

COMMENT
@IndianaScott

I enjoyed your comment @matthewrehrl I am one of the writers in this and I, too, balked at the idea when I was approached with the 'expert' label. I accepted it once I thought through the idea of each patient's journey is as unique as they are so in a way each of us are an expert on our own journey.

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Thanks for sharing your story.

COMMENT

While I heartily applaud this initiative, I take exception to the title "Experts by Experience". Empowering the patient is important yet, in this age of the democratization of expertise, where anyone with an opinion or access to Google is suddenly an expert in their own mind, legitimizing this notion is dangerous, especially in the world of medicine. You need look no further than on any Facebook group page related to a medical condition or on the healthcare social network Inspire to see the impact. Experts by experience warn others about the sometimes rare or totally fictitious side effects of the prescribed medications, advising the discontinuation of their use. I believe my legs ache because of the atorvastatin I'm taking and am telling anyone who wants to listen that statins are dangerous, overlooking the fact that I had partial meniscectomies in both knees 10 years ago, I'm 66 years old and I just ran 10km this morning in minimalist shoes. That's expertise by experience and, if not challenged, erodes valid medical expertise. As patients stop taking their medications or switch to quack cures, and physicians shy away from prescribing those mired in specious controversy, such expertise is becoming a public health issue. Like the celebrities-cum-experts in the Hollywood Hills who influenced public opinion about the safety of vaccines, experts by experience have the capacity to harm. Opinions do not represent expertise nor does having an experience, no matter how profound and deep, make one an expert.

Sharing patient stories offers opportunities for institutions and the people who work in them to improve healthcare and how, and how well, it is delivered to the public. The term "expert by experience" undermines those goals.

I'm no expert. This is just my opinion.

Ted

COMMENT

Hello @tedg I found your response interesting to read.

While I understand your thought on the current state of society and many thinking themselves instant experts on everything, I don’t understand some of your other points.

For instance I do not believe anyone in the ebook is giving medical advice nor undermining it.

I’m also unsure of your statement, which disregards experience as a valid teacher. Personally I do believe my 14+ years of caregiving does in fact make me an expert on that experience. Unlike the scarecrow in Wizard of Oz, there is no diploma giving one wisdom or brains in this arena. Personally if I need someone to drive me through a highway during a Minnesota blizzard, I much prefer someone who has experienced it many times, rather than a neophyte with a newly printed license.

Believe it or not, sometimes deep and profound experiences do qualify one to be viewed as having expertise.

As my grandfather used to say ‘to each their each’ so we may just have to disagree on this one.

COMMENT
@IndianaScott

Hello @tedg I found your response interesting to read.

While I understand your thought on the current state of society and many thinking themselves instant experts on everything, I don’t understand some of your other points.

For instance I do not believe anyone in the ebook is giving medical advice nor undermining it.

I’m also unsure of your statement, which disregards experience as a valid teacher. Personally I do believe my 14+ years of caregiving does in fact make me an expert on that experience. Unlike the scarecrow in Wizard of Oz, there is no diploma giving one wisdom or brains in this arena. Personally if I need someone to drive me through a highway during a Minnesota blizzard, I much prefer someone who has experienced it many times, rather than a neophyte with a newly printed license.

Believe it or not, sometimes deep and profound experiences do qualify one to be viewed as having expertise.

As my grandfather used to say ‘to each their each’ so we may just have to disagree on this one.

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Scott, my only objection is the title of the book, "Experts by Experience". As I stated, I wholly endorse the initiative and never suggested anyone in the book was offering medical advice; that reference was simply an example of expertise gone wild and the harm it can cause.

The issue at hand is what makes an expert and what is expertise. One might argue that a seasoned long-haul truck driver IS an expert in negotiating blizzard conditions in Minnesota whereas someone who experienced a terrible or horrific experience doing so once is not such an expert. My cardiologist is an expert in his field. I had a sudden cardiac arrest but am by no stretch of the imagination an expert in sudden cardiac arrests or indeed much of anything else. To call me an expert because of something that happened to me, and not because of something I worked long and hard to master, is denigrating the term and what it stands for.

I'm not sure we disagree. If you have worked for 14 years learning to be, and mastering the skills of, a caregiver, then perhaps you are an expert. I just don't believe the patients you've care for over those 14 years are experts in the field of whatever malady they were confronting.

COMMENT

I think the key word is “BY.” The type of expertise is qualified as expertise BY experience – which is a certain type of expertise, and accurately describes the content.

It’s also just a great marketing name – nearly a jingle. EXPERtise by EXPERience…,nice!

COMMENT

Fundamentally, I agree with the concept outlined in the commentary provided in the thread. Expertise has become a difficult concept, from a societal perspective, as we have seen a transition to crowd source definitions of reference as opposed to individual ones. One need only draw attention to the demise of the grammar reference books that many of us grew up with, or the loss of publication ombudsman at almost all newspapers of record, to see the impact and transition.

With that as a preface, I would note that from an individual provider's perspective the expertise that I seek is not in pathophysiology nor in particular therapeutic modality choices, rather, the expertise that I seek is the true lived experienced of those who have suffered with a malady, reflecting challenges and opportunities that I as a clinician will never face nor see. Truly informing my perspective by understanding more aptly this lived life experience is a level of expertise that I can never achieve and that I am desperate to gain.

COMMENT

'Tis true that online publishing, photo editing, music writing programs have given the opportunity to many to become proficient at skills that only a few years ago were the sole domain of those who had completed extensive education. Merely having an opinion and having a platform via social media to express it, does not make one an expert.

On the other hand, published or unpublished there are thousands, nay millions, of patients and family caregivers who have developed an experiential expertise of their condition and health journey – an expertise that is complementary to the medical expertise of the health provider. Together providers, patients and family members bring knowledge, experience and expertise to diagnose, manage, problem-solve and much more.

This discussion harkens to a recent blog post by Susannah Fox, former CTO at Health and Human Services, called (provocatively) "Paging fans of Dr. Google" https://susannahfox.com/2019/04/10/paging-fans-of-dr-google/

The post refers to the oft cited coffee mug with the quote “Don’t confuse your Google search with my medical degree.” Many people posted comments offering a counter phrase. I like this one: "Don’t confuse the 1-hour lecture you had on my condition with my 20 years of living with it."

While the juxtaposition of these 2 statements appears to be combative, I'd like to think they can be compatible if the demeanour is changed to be cooperative rather than staking ground. "Let's use your medical expertise with my experiential expertise to assess my medical status and get the best health outcome we can."

COMMENT
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