"Give Me the Numbers.” What 1,297 CHD Parents Unilaterally Declared About the Information They Actually Need

I know you know this one.

You’re sitting across from your child’s cardiologist, and you ask a question. Not the big existential one (you learned early that “will my child be ok?” doesn’t have a clean answer); something more specific. How many more surgeries are we looking at? What does this mean for school? What are the actual numbers on this procedure?

And you feel the answer being… managed.

Like they’re mulling over whether they’re going to give you a hint or sidestep it altogether. So the language softens and the details get vague, and you ultimately get the redirect:

“Let’s cross that bridge when we come to it.”

“Every child is different.”

“We don’t want to overwhelm you with too much right now.”

So you go home. Maybe you’re fuming. Maybe you’re confused. Maybe you’re curious. Maybe you’re all of it (sorry, projecting…) - so you Google it. Because you needed something to hold onto, something specific enough to think with, and what you just got back there was cotton wool.

And then later — maybe weeks, maybe years — you find out the information existed the whole time. And bonus: it was right there in a journal article you didn’t know to look for, behind a paywall you couldn’t get past (remember when I told you about Epstein’s girlfriend’s dad? Yeah, you can thank good’ole Robert Maxwell for that one!), written in language that wasn’t designed for you. The information was right there! You just weren’t trusted with it.

If you’re nodding right now, let me tell you this: you are not alone, you are not being unreasonable, and the research itself has been confirming over and again what you’ve been feeling for well over a decade. Not me personally - medical researchers.

Ok now breathe. Shoulders down. Still with me? Good, here we go.

In 2013, a team at Columbia University did something deceptively simple. They gave 38 paediatric cardiologists and 41 parents of older children with congenital heart disease (kids older than 3) the exact same list of educational topics — things like lifetime surgeries, exercise limitations, follow-up care, ability to explain the diagnosis to another doctor — and asked both groups to rank how important each topic was on a scale of 1 to 10.

Same list. Same scale. Verrrrry different answers.

Parents ranked every single topic higher than cardiologists did. Every one. With a consistent average difference of 0.85 points across the board.

Now that might sound small on a 10-point scale, but it was statistically significant and it went in the same direction for every question: parents wanted more.

And the biggest gaps? They weren’t about the acute stuff (both groups agreed surgery prep and medication info mattered).

The biggest gaps were in the long-game questions: how many surgeries will my child need over a lifetime? Could they need a transplant? Will they have exercise limitations? Could their own children have CHD? You know, the quality-of-life topics. The ones that shape how a family plans its future.

For the neonatal period (right before bringing baby home from the hospital), the biggest gaps showed up somewhere that really got to me: parents’ ability to explain their child’s condition to another doctor. Parents ranked this near the top (not to put too fine a point on it, but so do I!). They wanted to understand their child’s heart well enough to walk into an ER at any time of day or night — where the doctor on call has likely never seen a Fontan patient — and be able to explain what’s going on. Cardiologists ranked it lower.

Think about that for a second. Parents were essentially saying: I need to become my child’s medical translator because I’m going to be the only person in the room who knows what’s happening inside their chest. And the cardiologists didn’t rate that as urgent.

The authors of the study said the quiet part out loud. They wrote that cardiologists’ perspectives “may be influenced by elements of paternalism” — that clinicians may hold back information “due to concern that families might be overwhelmed or shocked.”

Now hang on a sec — before you get mad at me because you think I’m taking shots at medical personnel, let me be clear: this is not about villains. I know it might look like it, but it isn’t (although, seriously - how else is anyone supposed to interpret this). Cardiologists — among many other medical specialists — are trained to protect, so their instinct to manage information comes from a genuine (if sometimes misguided) place of care. Despite that, the result remains the same: families leave the room without the information they need to do the job they’ve been given.

That was 2013.

Let’s jump ahead to 5 years later, where a team at the Children’s Hospital of Philadelphia went bigger. Like way bigger. They partnered with 3 parent advocacy groups (Mended Little Hearts, the Paediatric Congenital Heart Association, and Sisters by Heart) and surveyed 1,297 parents about what information they wanted in public reporting of surgical outcomes, and how they wanted it presented.

Honestly, the findings should have changed everything.

Parents ranked survival statistics, surgeon-specific experience, and complication rates as the most important information — in that order. Not hospital branding, not amenities, and not cost, but the clinical reality of what happens to their children when they’re on the operating table.

The full ranking tells its own story. After survival, surgeon experience, and complication rates, parents then prioritized:

• Quality of life outcomes,

• Center experience,

• Post-operative care, and

• Other aspects of care.

Dead last, from every education level and every income bracket: cost to the family. (And I’ll come back to that, because to me, how they’re ranked matters more than the ranking itself.)

But this is where things got meatier. The researchers gave parents 3 different ways to display mortality data (and yes, I know — mortality data, what a thing to have to shop for).

• Option 1: A star rating system, the kind that’s still used by the Society of Thoracic Surgeons (STS), which assigns one, two, or three stars to a hospital based on how risky they are, all put together.

• Option 2: A numeric procedure-specific table that shows the total number of patients, the number who died, and the actual mortality percentage with confidence intervals.

• Option 3: A graphical version of the same procedure-specific data.

89% of parents chose the numeric table. The one with the numerator, the denominator, and the mortality rate. The real numbers.

Out of 1,297 parents, 46 of them didn’t want the data. 46. That’s less than 4%. And that’s perfectly acceptable, by the way - not everyone either wants or needs to know everything and that’s not a ding on them at all. I respect everyone’s right to choose what amount of information they prefer to have and when. Still — nearly 60% looked at the simplified, consumer-friendly, “less is more” star system and said Pass.

So this part is more personal for me, because this finding drives a great, big monster truck through an assumption that runs deep in medical communication: the idea that simpler formats are better for parents with less formal education.

The researchers looked at how each person’s preferences changed depending on their education. They had people with less than a high school diploma (22 ppl), some with a high school diploma (168 ppl), some college experience (327 ppl), a bachelor’s degree (453 ppl), and parents with a post-graduate degree (317 ppl).

Turns out that the preferences were pretty much the same across the board, no matter what level of education people had. Everyone valued the same things and preferred the same way of presenting information. And — surprise, surprise — they all rejected the star system in favour of the facts.

They also checked household income and race and ethnicity — same results.

The “less is more” philosophy — the one that was explicitly designed to help parents believed to have lower math and reading skills — was rejected by the very population it claims to protect. Parents with less than a high school diploma wanted the numerator, the denominator, and the percentage just as much as parents with PhDs.

(Allow me to open a parenthesis here because yes, as I said before, cost was ranked last. But let’s think about that for a second — because you know I did. The survey asked parents to basically choose which takes priority: knowing their child’s survival odds or knowing the price tag. Now, to me that’s not a preference — that’s a hostage negotiation. And I say this knowing fully that I’m using inflammatory language, because in too many countries, cost matters. Because of course you pick survival data over billing information when they’re competing on the same scale! The ranking itself and the options presented say more about the methodology than it does about whether parents care about costs, IMHO.)

So this data was collected in 2016, and the paper was published in 2018. It’s been 8 years since the evidence was printed and out in the world. And yet…

The star rating system is somehow still in use.

Not because clinicians are cruel, and not because institutions don’t care — but because the system keeps confusing 2 things that aren’t the same thing at all.

Accessibility and reduction.

Accessibility means: I can understand this. The language connects to something I already know. I can use this information to make decisions, ask better questions, and notice changes in my child.

Reduction means: We took out the parts we think you couldn’t handle.

One respects the reader. The other decides for them.

The “less is more” approach assumes that complexity is the barrier. But the Irons study data proved it isn’t. Parents at every education level wanted the real numbers. They didn’t want stars. They didn’t want smiley faces. They didn’t want the softened version. They wanted the facts.

The actual barrier isn’t complexity; it’s lack of accessibility. Jargon that no one translates. Paywalls that block the evidence. 15min appointments that leave no room for real conversation. Research written for peer reviewers, not for the people whose lives it describes.

Ring any bells?…

The problem is not now nor has it ever been that parents can’t handle the information. It’s that the information has never been translated into a form they we could reach.

And this is the thing I want you to hear, because it matters: there is a difference between translating and reducing.

A translator preserves the meaning; a reducer removes it.

When I explain Fontan physiology through plumbing, or cardiac conduction through electrical wiring, or exercise limitation through a car running in high gear on low fuel — I’m not simplifying. The underlying cause is still there: the pressure gradients, the resistance, the flow dynamics, the feedback loops — all of it is preserved. It’s just connected to something you already understand from your own skills and expertise and lived experience, so you have a foothold. And from that foothold, you can then turn around and ask better questions at the next appointment, recognize changes sooner, and explain your child’s condition at the drop of a hat to anyone who’s never seen a Fontan kid before.

That’s what Arya’s parents were asking for in 2013. That’s what Irons’s 1,297 families confirmed in 2018 — Not less. Translated.

So what does the system usually do when someone points out the information gap?

It creates a committee. It puts a parent or two on it. It calls it “patient and family engagement.”

And sometimes that’s genuine! Truly, sometimes the parents’ presence changes what gets studied, what gets prioritized, and what gets communicated. Sometimes the questions shift because a non-clinician in the room asks the one thing nobody else thought to ask.

But maybe more often than many would like to admit — and if you’ve ever sat on one of these committees, you already know this — the agenda was set before you got there.

In 2017, a group of patients, clinicians, and researchers published a paper in Family Practice that mapped exactly this. They called it what it is: tokenism. And they defined it precisely, too, which I appreciated: “the difference between the empty ritual of participation and having the real power needed to affect the outcome.”

They built a continuum — genuine on one side, token on the other — across 3 domains: structure, intent, and relationship. And the token side of that continuum reads like a checklist that every parent on an advisory board will recognize instantly: pre-determined goals and agenda, with the parent(s) there to rubberstamp the output. Patients invited as an afterthought, after the project has already started. Work and input going into a void; parents unable to see where their contributions went (if anywhere) or what they accomplished. Medical jargon still present at the table, with the parent(s) sitting there listening to a high-level research summary they weren’t even prepped for.

But here’s the insight that makes this paper essential: the researchers found that intent and structure are independent. Because you can have a beautifully designed engagement structure (committees, advisory boards, named parent representatives, the whole kit and caboodle) and still have zero genuine intent to share power. Yes the committee exists and yes the parents are in the room, and you’ve got the photo to prove it! And still, the agenda was set before they sat down.

All this to say that the structure doesn’t prove the intent, not by a mile. Only visible consequence proves the intent.

• Did the priorities change because the parent was in the room?

• Did the research question shift?

• Did the output look different?

If you can’t point to what changed, then what you’re really left with is performance, not engagement.

3 papers. Over 13 years of evidence. And the same finding, over and over and over again.

Parents want the information. All of it. Simple as that.

At every education level, every income bracket, every background. And we don’t want it simplified — we want it translated. We don’t want a seat at a table where the agenda is already set; we want our knowledge and our questions to actually shape what happens next.

The research says it - black on white. Every time they ask us what we want we name it. And they publish it and peer-review it (then paywall it 🙄). Repeatedly.

So the question isn’t what we parents want. We know that. Asked and answered. The question is whether the system is ready to stop deciding what we can handle, and start listening to what we need.

And I want to say this directly, because I think some of you need to hear it:

You are not being “that parent” when you ask for the numbers. You are not being difficult when you want the real picture instead of some platitudes that are completely unhelpful. You are not overstepping when you read the research yourself and come back with questions your clinician wasn’t expecting. That’s on them, not on you.

Nearly 1,300 families told a team of researchers at one of the best children’s hospitals in the world exactly the same thing you’ve been feeling in your gut:

Give. me. the facts. I can take it. I need it. Stop ‘protecting’ me from the information I need to make informed decisions about my child.

That’s not anxiety. That’s the opposite of helpless.

Take heart,

Marie-Jo 💕

Share it with someone who needs to hear it. A parent who’s been told “let’s not get ahead of ourselves.” A partner who’s still processing. A clinician who’s already better than most at this but might not have seen the Irons data.

And if you are a clinician reading this… thank you for being here. Genuinely. The fact that you’re reading a parent-written research translation publication means you already get it, and I say this without guile — the families in your care are lucky. Now please help us close the gap for everyone else.

• Arya B, Glickstein JS, Levasseur SM, Williams IA. Parents of children with congenital heart disease prefer more information than cardiologists provide. Congenit Heart Dis. 2013;8(1):78-85. — The first study to directly compare what parents want vs. what cardiologists think they want. Small study (38 cardiologists, 41 parents), but the direction of every finding was the same: parents wanted more. The quality-of-life and follow-up care gaps were the largest.

• Irons ML, Gaynor JW, Spray TL, Feudtner C. Parents’ preferences regarding public reporting of outcomes in congenital heart surgery. Ann Thorac Surg. 2018;105(2):606-614. — The big one. 1,297 parents. 89% chose the numeric format with real mortality data over star ratings. Preferences were identical across education, income, and race/ethnicity. Figure 4 is the chart every parent advocate should have bookmarked.

• Hahn DL, Hoffmann AE, Felzien M, et al. Tokenism in patient engagement. Fam Pract. 2017;34(3):290-295. — The paper that names what many of us have felt on advisory boards but couldn’t articulate. Table 1 maps the genuine-to-token continuum across structure, intent, and relationship. Not CHD-specific, but painfully applicable.

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