You can learn a lot about the need for content strategy and information science by undergoing brain surgery and chemotherapy. 

Of course, there are less traumatic ways to learn these lessons. I hope my personal story serves that purpose for you.

What started with a headache…

On Friday afternoon, November 10, 2017, I was diagnosed with Primary Central Nervous System Lymphoma — a rare form of non-Hodgkin’s lymphoma (cancer of the lymphatic system). 

After having complained of a headache during my annual physical examination earlier that day, my doctor referred me to the radiology department of a local hospital to undergo an MRI.

An MRI is a diagnostic test that provides doctors with photographs of the inside of your body that can help them pinpoint what’s wrong with you. 

The results of my MRI showed that I had a plum-sized tumor in the right frontal lobe of my brain. 

The doctors determined that I should undergo emergency brain surgery the next morning. I was transferred to Sutter Pacific Coast Medical Center where neurosurgeons removed the tumor from my brain and oncologists began preparing a sixteen-week series of chemotherapy treatments.

I awoke from surgery on Saturday, November 11, 2017, to a room filled with people — my mom, my partner, some nurses, and the neurosurgeon who had performed the brain surgery — who watched in amazement as I delivered an impromptu, anesthesia-fueled TED-talk-style presentation on the need for structured content in the cannabis industry.

The neurosurgeon seemed concerned at first.

“Is this normal?” I recall him asking of my loved ones.

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My family told the surgeon that while they had never heard me wax poetic about the need for medical cannabis product labeling guidelines, they found it perfectly normal for me to be doing so. After all, I’m a conference organizer. I get paid to write and deliver presentations. My first content strategy job was with a pharmaceutical company. My first content strategy project involved creating structured product labels for a life sciences firm. And, I use marijuana and I’m friends with the owner of one of the largest cannabis dispensaries — and art festivals — in the country.

So, they deduced, my behavior wasn’t unusual, but for the fact that I was behaving that way as soon as I awoke from having had major brain surgery. That part seemed odd to everyone.

Except me. But, I was still stoned from the anesthesia.

The surgeon determined my strange, unrehearsed, drug-induced presentation was a “positive sign” that the surgery went well. He seemed to be saying, if your synapses are firing, then things must be working well upstairs.

Content strategy and information science are needed to deliver patient-focused healthcare

My experience as a cancer patient involved a lot more than brain surgery.

My patient journey included a litany of experiences with healthcare professionals of all sorts, and those interactions uncovered a pressing need for healthcare and insurance content providers to improve the way they communicate with patients and their caregivers.

My observations point to a need for healthcare and insurance providers to incorporate best practices and lessons learned from the content strategy and information science disciplines into their patient care strategies.

A lack of awareness is part of the problem

Even in the neurosurgery world, where one might reasonably expect awareness of the negative impact of poorly designed, and ill-conceived healthcare content on patient care, an understanding of information science is lacking. 

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When I pressed my doctors to present me with a narrative of my patient journey up to the time that I awoke from surgery (someone had to write down exactly what happened to me from the time I arrived at the hospital until the time I awoke from surgery, right?) I was told that there was no such document (or way to generate one) and they had given that information to me already.

I disagreed with them.

Providing information piecemeal to a patient over a 24-hour period (from the emergency room to the surgery recovery room) is not the same thing as providing a patient with a complete — narrative — accounting of what happened to them. My healthcare providers seemed to be arguing that all of their combined efforts — and communications — amounted to providing me the information I requested.

My frustration level increased a bit each time I spoke with a neurosurgeon or cancer specialist who — it became apparent — had no idea that there were better ways to communicate to patients — approaches that could engender trust, reduce anxiety and fear, and empower each patient to become active participants in their own recovery.

I became irritated by what I saw as a lack of preparation and professionalism by the hospital staff — and an absence of common sense.

“Didn’t I just wake up from brain surgery?” I recall asking aloud. “If so, what’s wrong with you people? Why are you making it my responsibility to weave together the narrative and keep track of what’s happened to me?”

As the effects of the anesthesia were starting to subside, my brain kept returning to the same questions: How does what happened to me impact the rest of my life? What happens next? What does all of this mean to me? What if I make the wrong decisions? Will chemotherapy lead to complications? Who will run my company? Does my insurance cover everything? What should I be eating to prevent cancer from recurring? How will my life change? Will I ever be able to work again? How will I pay for all of this?

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The healthcare and insurance organizations that I interacted with during my recovery seemed unaware that they could use established science to help them communicate more effectively. Some individual practitioners were better than others at communicating, but over the last 18 months of treatment and recovery, it is clear to me that few healthcare or insurance professionals put best practices and lessons learned from neuroscience researchers and healthcare-focused content consultants to work for them.

Their lack of awareness leads to misunderstandings, confusion, frustration, and anxiety. They have yet to discover the impact content decisions have on those with whom healthcare professionals attempt to communicate. 

I’m not attempting to paint the entire healthcare and insurance sectors as inept or unknowledgeable. There are indeed professionals whose work focuses on improving the effectiveness of healthcare and insurance information. They hail from the world of medical informatics (sometimes called healthcare informatics).

Unfortunately, many patients aren’t benefitting from the expertise these communication specialists hold. Their content know-how seems to be locked up in academia and in short supply in the customer-facing content development teams in many healthcare and insurance organizations.

Half of what a patient is told is forgotten; half of what they remember is misunderstood

It’s also important to note that even under the best situations, healthcare and insurance communication challenges are not entirely the fault of those doing the communicating. While there’s plenty of room for improvement in the healthcare and insurance sectors, many patients (and their caregivers) try to remember the information they are provided, but they usually fail.

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One study found that patients remembered only 40% of the information provided to them. And, to make matters worse, “nearly half of the information [those patients] said they remembered was incorrect;” making misremembering an important consideration that healthcare communicators must factor into their content communication strategy.

Research shows that cancer patients who are scared and anxious may not understand all the information their healthcare providers have shared with them. And, they are less likely to follow treatment plans. Anxiety, fear, and depression negatively impact patient quality of life.

My experience as a fully insured, highly educated patient at a top-notch cancer hospital is not the experience of every patient. I received what some healthcare insiders would describe as the best care possible. And, by and large, I agree.

But, as is the case in many situations, science can help us improve the way we live and work. The best can become better.

Those who provide healthcare and insurance information to patients can — and should — work to ensure that science drives the content and communication decisions they make. Leveraging information science and content strategy best practices can help improve medical outcomes and ensure patients have all of the information they need — the right information, delivered to the right patient, at the right time, in the right format and language — regardless of delivery channel.

We can — and should — aim to do better.

We content strategy and information science professionals must find ways to impart our knowledge and share our depth of experience and the science behind our decisions with healthcare and insurance practitioners. 

Medical and healthcare informatics professionals need to be intimately involved in the creation, management, translation, visualization, and delivery of healthcare and insurance content.

Healthcare and insurance content production teams can do better. And with our help, they will.

Related content: Nurses Must Be Involved in Patient Health Literacy Support