Are We Ok With A Health Literate 1%?
A Call to Action for All Stakeholders in Healthcare (hint: that’s all of us)
Lack of participation in clinical trials is in a crisis state- trial participation rates have been stagnant for decades and many good people have tried many good things- so why don’t we have momentum?
I read an article once that said “health literacy is a personal asset” -and this asset is more valuable than your home or your car, because your health literacy has a direct correlation to your health outcomes.
It’s hard to pin down the statistics but roughly 1 in 4 people in the world have adequate health literacy and only 1 in 10 have the skills they need to manage health and prevent disease . We can’t be ok with this.
At MedicineX many of us shared our personal stories and how they have driven us to this work and here is mine. In 2001 I lost one of my 5 siblings and it changed the course of my career. His name was Levi and he was a chaplain in the military, married to a wonderful girl, and he was funny and introspective and smart and 16 years ago at the age of 21, he got out of a pool and died with no warning.
After his death, my family was part of a research registry where they identified the gene for LongQT disorder — a condition that can be treated if you know it exists. So a clinical trial saved many lives in my family and will continue to do so for generations.
But this is the problem- it usually takes a crisis like a death or a cancer diagnosis to wake us up to this need for better health literacy and I can personally tell you that getting a crash course for you or your or a loved one is not what you want to be doing in one of the most difficult moments of your life.
So we must address health literacy and we must de-mystify clinical trials before they are an option of last resort. Clinical research is a care option: one that should be listed along side other treatment options like over-the-counter and prescription medications, diet and exercise and holistic health practices like acupuncture and homeopathy. More important, without it, all of those other treatment options would not exist.
It does not just need to be up to us- the “health literate 1%” to help others see this. I think we are overlooking an important ally in changing this paradigm and a very important driver: money. As much as 70% of healthcare spending is attributed to behavioral and lifestyle choices and largely our employers are footing the bill –money talks: we need to start saying to our employers “if clinical research was a care option, you could save some cash.” and to all those employers who make their livings studying, developing, prescribing, packaging, distributing, promoting and deciding what treatments we get we need to say “no research participation, no jobs.”
“Sometimes the truth needs to punch you twice.” I love this quote from Yrsa Daley-Ward because it speaks to the fact that once you see a truth, once you really see it- it can’t be unseen and then you are compelled to act.
This is the truth I see:
Research participation does not just find new treatments and cures. It reduces healthcare costs…AND saves jobs…AND has impact on the social causes we care about.
I want to let that sink in. Cure disease, reduce cost, save jobs… and impact on the causes we care about.
What do you care about? I mean really, truly care about?
For me, it’s homelessness- a cause that goes deep to my childhood when we had an outhouse and stood in the government food line and got our healthcare thanks to community clinics.
At the root of homelessness is poverty, but it is also job insecurity, and untreated addiction and mental health disorders. Long before I cared about clinical research, I cared about these things and I know from personal experience that if you want to stir action- then you must go through empathy first.
People don’t want to hear about research participation- they want us to meet them in their own use and in doing so we gain permission to teach.
You see if someone told me I could give a dollar to a homeless man or I could do something that would cause him not to be homeless in the first place like participate in a study on bipolar disorder the first words out of my mouth would be Teach Me How.
This is the true power of health literacy- when we can empower people to change their lives and the lives of others — when we can give them the precious personal asset of knowledge. We have an analog for this- the TRUTH campaign gave an entire generation the facts about the impact of smoking, enough knowledge to change behavior.
This is where our employers come in — through Corporate Social Responsibility programs — a place where people, planet and profits can coexist in a symbiotic ecosystem of good. Employers can protect their profits and be a catalyst for good by making just one small change to their CSR programs- they can introduce health literacy curriculum- one that normalizes clinical research as a care option.
In doing so, they can take the good they are already doing and do so much more: They impact the next generation because an empowered employee is an empowered parent; They erase inequality and access disparities because an empowered employee is an empowered member of the community.
But it starts with us- the stakeholders in healthcare, those of us with the most to gain have the most to give — and we can’t wait.
Movements start in moments.
In 2004 a devastating Tsunami hit Asia- many lost their lives and it took years, thousands of volunteer hours and millions of dollars to recover. While there were some signals- people simply didn’t expect it.
We have another devastative wave coming at us and this one we can see with enormous clarity- its called Alzheimer’s Disease and without willing research volunteers, it has the power to bring us to our knees.
Sometimes the truth needs to punch you twice.
Can connecting research with the social causes we care about improve health literacy and save healthcare and improve our world? I believe the answer is yes. We have a chance to protect the health advances yet to be discovered, for generations to come, but we must act now to make health literacy and clinical research a care option for all. Let this be our moment.
This article was adapted from my 2017 MedX Oral Ignite Talk. To get involved follow me on Twitter @radclipatra or comment below.
