Missing Not at Random: Why EEG Data Are So Precious

Charlie has an inpatient EEG next week; “three to five days,” starting Wednesday. I put out the "Bat Signal" to the other epilepsy families on Facebook.

Epilepsy families:

Charlie is doing an inpatient EEG next week. He is like a toddler in a grown man's body. For the 20 minute EEG they had to put him in the wrap thing the whole time because the minute they let one arm out those leads were history.

What is your best advice for big kids who cannot be easily distracted? I tried to explain the situation to the EEG people. Bless them, they are sending in Child Life but so far the only options they recommend are toys and "distractions" but that's not how Charlie rolls. He doesn't follow a TV show. Like...based on that conversation they don't seem to get it which is weird since I KNOW he is not the only kid like this. He will rip those leads off of his head the very second he has an option and I can't physically hold his hands for three days. I messaged the team to tell them to eat their Wheaties and don't overschedule that day...I am planning on sitting right in the bed with him the whole time and am wearing my stretchy pants because it will be a marathon.

I guess we will try to do our best but if anyone wants to weigh in for a blog post on best practices from experienced parents it could help others, let me know!

What the experienced parents said

I am de-identifying everyone here, but I want you to hear the collective voice, because it is remarkably consistent:

My son is exactly like yours. We had to leave a sleep study in the middle of the night. The leads never stood a chance and he wasn't sleeping anyway. He's bigger and stronger now and I can't just hold him down.

We had a home study scheduled. The tech spent three hours trying to get him hooked up and he took off every single lead. We ended up inpatient. And sedated.

I can't get her to sit still either. She'll rip stuff off in the blink of an eye. We've had to sedate her to get through any lengthy test like this.

I'm dreading the next time they suggest an EEG. It's just not possible anymore. Even if you manage to get the leads on, he'll just pull them off.

He dislikes people being in his face or trying to touch his head, unless you're massaging his scalp, which he's fine with.

And more than one person said the same thing about Child Life, with real affection: they mean so well, and I stress out anyway, because he just throws the toy across the room.

Several people had no advice at all. They just said: I've been through it, it isn't easy, I cried, you are not alone. Which, honestly, helped as much as anything.

But there were also a lot of specific, hard won, genuinely clever suggestions, and I do not want a single one of them to get lost. So here is the full list:

For engagement and distraction

• FaceTime with people he loves and recognizes. This came up more than once, and from families whose kids do not track a TV show.
• Game shows on a loop. Family Feud and Wheel of Fortune were both named.
• Music. A basic MP3 player, a Yoto or similar, and a tip I had not thought of: you can convert audio from YouTube for the non-traditional things your kid loves that are not on any streaming service. A keyboard or other instruments if the unit allows it.
• Plastic eggs with treats inside, hidden around the room for an egg hunt.
• Favorite items placed within arm's reach of the bed so he has to find them.
• Cards, blocks, drawing, if those are things your kid engages with, even in short bursts.
• Food. Do not underestimate food.
• Visits from family and friends on a rotation, if the unit permits it.

For the leads themselves

• A felt backpack, sewn by a friend, to hold the lead pack. This is one of those solutions that only ever comes from a parent.
• Elbow immobilizers, the elbow no-nos. Two different families named these independently. One had used them to keep a chest tube in place. They prevent the arm from bending up to the head without full restraint.
• Ask whether he can get up and walk around the room while connected. Some setups allow more mobility than you would assume.
• Ask about cap EEGs, if precision requirements allow it.

For staffing and timing

• Bring backup. One mom brings her own mother to every overnight EEG so there are two adults in the room. She described it as the single thing that makes it survivable.
• Ask the hospital for a sitter in the room during all awake hours, for extra hands. One family has this arranged now as standard, and it changed everything for them.
• Time the placement strategically. One family got through hookup after an ER trip when their daughter was already loaded on Ativan. Not a plan you can schedule, but if you are already in a situation, use it.
• Sedation, when nothing else works. Several families have gone this route for lengthy studies.

And one from the outside-the-box file

• Think about your kid's idiosyncratic triggers. After several days inpatient with no seizures captured, one mom mentioned to staff, half joking, that sugar was her daughter's trigger and a sucrose bag might do the job. They tried it. It worked.

I am not just Charlie's mom. I am the Data Mom.

I spend my professional life working with observational health data. Registries, electronic health record (EHR) data, common data models, real world evidence. And when I read that Facebook thread, I did not just see a hard week coming. I saw a structural gap in the epilepsy evidence base, described in the plainest possible language by the people living inside it.

Plenty of people with epilepsy, including plenty with significant disabilities, get through EEGs just fine. Some kids nap right through placement. Some adults have done it so many times it is routine. This is not a universal problem.

But it is a very common one, and the people who cannot tolerate the study are disproportionately the people with the most complex, most severe, most treatment resistant epilepsy. This is the exact group we most need to understand.

Here is the thing about EEG data. It is one of the richest, most objective signals we have. It is how seizure types get characterized. It is how surgical candidacy gets decided. It is increasingly the substrate for machine learning work, including seizure detection, seizure forecasting, EEG based biomarkers, and automated phenotyping. Enormous methodological energy is pointed at EEG right now, and rightly so.

But many of the people in those very data sets could barely tolerate the recording. That is not a small caveat. That is a selection mechanism operating on exactly the axis we most need to study. How many never made it into the data set at all?

Where the missingness comes from

Some never get the study at all. A neurologist who knows the family looks at the situation, weighs the odds, and does not order it. That decision leaves almost no trace in the data. There is no code for we didn't try because we knew how it would go.

Some start it and abort it. Three hours of attempted placement, a middle of the night departure, an incomplete recording. In most systems that becomes a cancelled encounter, a short unusable file, or nothing.

Some get it under sedation. Which is often the right clinical call and I will never second guess a family who made it. But sedated EEG is not necessarily the same measurement. If you are training a model or defining a phenotype and you do not know sedation status, you have quietly mixed two different things together.

Some get through it on the strength of a parent sitting in the bed for seventy two hours.

For these reasons, the EEG data we have are not a random sample of epilepsy. They are a sample weighted toward people who can sit still, and toward families with the reserves to make it happen. That is a bias with both a clinical and a social gradient.

This is exactly why we built REST-LGS

I have lived it from the research side too. I am one of the authors on the Refractory Epilepsy Screening Tool for Lennox-Gastaut Syndrome, the REST-LGS. If you have not run into it, the short version is that LGS is an epileptic encephalopathy that starts in childhood and is classically defined by a triad: multiple seizure types with childhood onset, intellectual disability, and a characteristic EEG pattern, specifically slow spike and wave discharges under 2.5 Hz.

Notice the third item. The diagnosis depends on an EEG finding.

Now think about who has LGS. Adults with drug resistant epilepsy and intellectual and developmental disabilities. Many of them living in group homes or residential settings. Many of them exactly like Charlie. The syndrome also evolves, so the EEG signature can change or evolve, which means every EEG is key to understanding the person's history. Childhood records frequently do not survive the transition from pediatric to adult care; and it is extremely challenging to obtain EEGs on adults like Charlie.

So we built a screening tool that does not depend on any single finding. Eight criteria, four major and four minor, developed through a modified Delphi process with epileptologists, epilepsy nurses, residents, and scientists. It was designed to be usable by non specialists, including primary care providers, and to be populated from whatever records actually exist.

Then we tested it in the real world, in a retrospective chart review of 100 adults with drug resistant epilepsy and intellectual and developmental disabilities. And the missingness was stunning.

Slow spike and wave history on EEG: unavailable for 46 percent.

Age at seizure onset: unavailable for 42 percent.

Both of those are major criteria. Other EEG abnormalities, a minor criterion, was unavailable for 49 percent.

Nearly half the sample had no usable answer for the single most syndrome specific feature in the definition.

We had to add a weighted scoring system, giving major criteria three points and minor criteria one, precisely so the tool would still function when the EEG data were missing.

Of the 74 adults in that review with no prior LGS diagnosis, 42, which is 57 percent, screened as possible or likely LGS. Those are people who had been living for years, sometimes decades, with drug resistant epilepsy and no diagnosis other than "seizures" or "epilepsy." A syndrome diagnosis is not academic. It changes which medications are indicated and covered by insurance, it can reduce polypharmacy, it connects families to a community, and in a population with elevated risk of sudden unexpected death in epilepsy (SUDEP) it changes how seriously the seizure burden gets treated.

So when I say EEG data are precious, I am telling you that we had to design a diagnostic instrument around its absence.

Making EEGs easier to obtain and share

If you are in a position to improve any of this, here is what I would like you to do.

Make acquisition easier. Some of this is technology. Dry electrode systems, cap based setups, ambulatory and home recording, subscalp and implanted devices, wearables that capture something useful even when scalp EEG is impossible. Some of it is much less glamorous: adequate staffing, a room that is not overstimulating, techs who have done this before with a big kid who cannot be reasoned with, scheduling that does not stack the placement against three other procedures. Some of it is designing acquisition protocols with families instead of handing them a plan. The felt backpack, the egg hunt, the game show marathon, the FaceTime rotation. Those came from people who have run more trials of "how do we keep the leads on" than any research team ever will.

Then make sharing easier. This is the piece that gets skipped, and it is the one that makes me the most frustrated. We fought for that EEG, for the opportunity to spend three to five days in a hospital bed with a child pushed to the edge of what he can handle. After all that, the study lives as a PDF report in one health system's chart, in a proprietary raw format nobody outside that system can open, with no clear, easy path for the family to obtain a copy of the actual data. When Charlie transitions to adult care, most of that could be gone. That is the 46 percent.

I have written up the practical mechanics of this in detail, including how families can request their own records and what the different sharing pathways look like: Research Onboarding for Rare Epilepsy Communities: Registry Demo and Toolkit.

If you take nothing else away

EEG data generally do not live where the rest of your records live. Reports are sometimes available through MyChart. The actual study almost never is in your portal. In most systems you have to go through a separate office, often the same one that handles imaging. In my experience those offices are pretty accommodating, and I have had good interactions with them. But it still takes phone calls, forms, follow up, and time.

That bottleneck is a solvable informatics problem, and nobody owns it.

Who is going to carry this

Here is my honest prediction. As with everything else in rare disease, advocacy will end up bearing the burden of education and facilitation. Again. Because we have a deeply fragmented system and there is no other actor positioned to sit with a family and walk them through it.

I would like that to be less true. So here are the things I am working on in my own space, and the things I would like to see other people fund, review favorably, and build.

• Treat EEG retrieval as an informatics priority in its own right. When you are reviewing grants or defining funding opportunities, this is a great area to focus on. It is unglamorous, it is high yield, and it is currently nobody's job. There are imaging experts, especially in the Observational Health Data Sciences and Informatics community, known as OHDSI, who would be glad to support this work and who I am sure would have excellent ideas.
• Lean on the informatics community. They have a genuinely good handle on interoperability and data sharing. This is their home turf and they are underused here.
• Support self download and self sharing. Encourage research activities that let families obtain and share their own data, rather than defaulting to expensive vendor solutions that take years to implement. As much as I love AI and all the automation it enables, this is one example where the automated path has repeatedly turned out to be the slower, more expensive, more time consuming path. Sometimes the old fashioned way is the better option. I write about this a lot in Ten Habits of Great Data Analysts: the least complicated approach is very often the best one. Until we get our act together as a research community and can facilitate free or inexpensive EEG transfer for research studies, the direct approach is what actually works.
• Build federated methods for studying EEG. The OHDSI community is the right one to solve this, and I say that as someone actively working in OHDSI. Analysis travels to the data, patient level records stay at the site, and only aggregate results leave. That pattern is exactly what waveform research needs, and the community that runs it has the interoperability expertise, the vocabulary infrastructure, and the network of sites already standing.
  
  The mechanics are familiar to anyone who has done a network study. Data are extracted, transformed, and loaded into a common data model, most often the Observational Medical Outcomes Partnership model, or OMOP, and then one analytic script runs everywhere it is sent. The payoff in pediatrics would be large, because these studies concentrate in a small number of specialty hospitals. Federation takes the burden off families entirely and makes it far less likely that we miss people. What is missing is not the idea or the community. It is somebody funding the waveform layer.
• Give families the raw study, not just the report. If a family asks for their own EEG data, the answer should be yes, in a usable format, without a six week fight. Information blocking rules are supposed to address this, but practice has not caught up.
• Assign a global unique identifier, or GUID, so the EEG can be connected to everything else. An EEG in isolation is interesting. An EEG linked to that same person's genetic results, seizure diary, medication history, and natural history study enrollment is where the actual discovery happens. Right now those typically live in separate silos with no reliable way to know they belong to the same human being. A GUID solves this. The general pattern is that a set of stable personal details is hashed to produce a subject identifier, so the underlying information is not what travels and the same person resolves to the same identifier across studies and sites. Several schemes are in use across federal data repositories, rare disease registries, and multi-site research networks, and they differ in how generation and matching are handled, so choose one deliberately rather than inherit whichever one shows up first. It pairs beautifully with federated analysis, because you can establish that two sites hold records on the same person without pooling those records. If you are standing up an epilepsy study or a registry, assign GUIDs at enrollment and agree on the scheme with the people you will eventually want to link to. Retrofitting them later is painful and sometimes impossible.
• Count the failures. Aborted and cancelled studies are data. A site that can tell you it attempted forty long term EEGs in this population and completed twenty two has told you something important about both the population and the site. Most of us cannot answer that question today.
• Carry the record forward. The single highest yield intervention for adult LGS diagnosis might be making sure the pediatric EEG data survives the handoff to adult care.
• Teach EEG in informatics and data science programs. This is big data at its finest. It is exciting to work with, the methods are interesting, and it could lead to biomarkers that transform how we understand and treat the developmental and epileptic encephalopathies. Students should be getting their hands on it.
• Validate new technology in the hard cases. If the tolerant population is also the validation cohort, we will have built better instruments for the people we could already measure.
• Fund the organizations already doing this work. Support programs that promote education and awareness, facilitate research, and enable data acquisition and sharing across all of the epilepsies. The Rare Epilepsy Network, CombinedBrain, and Data for the Common Good are doing exactly this kind of connective work.

A wicked problem we are positioned to solve

In public administration there is a term for this kind of thing: a wicked problem. Horst Rittel and Melvin Webber introduced the concept in 1973 to describe problems that resist clean definition, have no stopping rule, involve many stakeholders with different framings, and cannot be solved by technical expertise alone. Brian Head's open access book Wicked Problems in Public Policy is an excellent, readable overview if you want the current state of that literature.

Fragmented EEG acquisition and sharing is a textbook case: there is no single owner, no single fix, competing incentives at every layer, and a set of stakeholders who mostly do not talk to each other: neurologists, EEG techs, hospital records offices, device vendors, informaticians, funders, advocacy groups, and families.

But here is the encouraging part. Compared to most wicked problems, this one has an unusually well defined set of levers. We know where the data are, what standards exist, which community has the interoperability expertise. We have families who are highly motivated to participate.

One more thing, for the families

Everything above is about the person in the bed. There is a second half that almost nobody prepares you for, which is what happens to the parent who cannot take their hands off their child for three to five days.

I put all of that, along with everything the families sent me, into a free tool: the Hospital Packet Builder. It walks you through building a fact sheet about the accommodations you need, a door sign, a packing list for both of you, a set of questions to ask before you arrive, and wording you can use on the phone or in an email, including the specific language for requesting the raw EEG study rather than the report. Fill it in, print it, and give it to Child Life. You can save your version and reopen it before the next admission.

The practical notes I would give another caregiver are in there too, under Notes from a caregiver.

Back to next week

None of this makes Wednesday easier. Wednesday I am going to be in a hospital bed with my nearly adult son, in my stretchy pants, running out the clock. I did have a great conversation with Child Life after the Facebook thread and they are bending over backwards to try to help us. Just knowing that they want to help makes a huge difference.

But I keep thinking about how casually that Facebook thread produced advice: a dozen families, one afternoon, near identical experience, and a near universal sense that the system does not quite believe our situation is common. Clearly, it is common.

We built the evidence base out of the studies that made the miraculous journey by being actually ordered, then actually completed, and then actually shared, and then actually being analyzable.

References

Wolf SM, Boyce D, Peña P, Piña-Garza JE, Roland JJ, Thomas B, Zogejani D, McGoldrick PE. Real-world use of the updated refractory epilepsy screening tool for Lennox-Gastaut syndrome. Epilepsia Open. 2024;9:1277-1286. Open access.

Rittel HWJ, Webber MM. Dilemmas in a general theory of planning. Policy Sciences. 1973;4(2):155-169.

Head BW. Wicked Problems in Public Policy: Understanding and Responding to Complex Challenges. Palgrave Macmillan; 2022. Open access: library.oapen.org

If you are building or analyzing EEG data sets in epilepsy and want to talk, my inbox is always open. danielle@boycedatascience.com

When the truth hurts: giving (and receiving) bad news while preserving the caregiver-physician relationship

I saw a familiar post on Facebook today:

“The doctors said she would never talk,  but here she is singing her A, B, Cs!”

As the mom of a child with a developmentally devastating condition, I have been on the receiving end of a lot of bad news in the hospital setting. I have also had my share of terribly insensitive encounters with the medical community.

As an advocate for parents like me, I have heard many tales of bad bedside manner, but I also know that’s not always what motivates parents to make posts like this.  I think what’s often going on is that they are giving themselves permission to hope, and the most validating thing in the world is to prove an expert wrong. This isn’t about their child singing the A,B,Cs. This is about all the other things they hope for that still hang, precariously, in the balance.

I feel protective of these parents, because I know too well how traumatic incidents with insensitive health care workers, teachers, and therapists in my own journey with Charlie have eroded my faith and trust in the world.  Epilepsy aside, try to find a mother of four who hasn’t had at least a few negative interactions with the health care system. We all do.

But as a research data analyst who has supported some of the finest physicians in the world for more than two decades, I also feel protective of physicians.  Not always, but often, after a conversation with parents who make these odds-defying posts, I will learn that what the physician actually did was to share the evidence, and the evidence is often quite bleak when it comes to conditions like infantile spasms. The physician may have also shared a link to the early intervention program in the area, which is exactly what a physician should do. The parent is interpreting that as, “the doctor is saying my baby will never walk, just like the kids in the article.”  It’s not that the parent is lying. That’s what she heard. When your sweet baby gets a diagnosis like infantile spasms, it’s like someone fired a gun right next to your ear, then started giving you the details of the most life-altering news you ever heard, in a language other than your native tongue.

Nobody wants to be called out on social media, especially if your words are going to be twisted.  So, maybe the best thing is to not even try to predict the future and wait and see what happens. Right? Wrong! For many families like mine, not sharing information about prognosis can have devastating results.

It has been almost a decade since epilepsy hijacked our lives. My son, Charlie, now functions at about a 1-2 year old level in most areas. As Charlie was growing up, social media has exploded, allowing patients, scientists, and clinicians to connect in miraculous ways. Without a proper study I can’t say if there is a definitive correlation, but I have observed this: since social media has become so popular, physicians (and educators) are becoming less and less candid with me about Charlie’s prognosis. And that’s a big problem. If no one will acknowledge that, for example, with his medical history, if you are in the shape he’s in at age 10, you’re unlikely to live independently, I can’t properly advocate for skilled support when he transitions to adulthood. I can’t impress upon his current teachers why he should be learning life skills, and that it is his catastrophic brain damage, multiple medications, and daily seizures, not laziness, that is keeping him from learning basic concepts like letter sounds and number quantities.  Severity=services, and my inability to get the medical community to acknowledge the severity of his prognosis is giving public administrators permission to not spend money on him.  Nobody wants to be the doctor who says “he will never…” even though, we all know that for some things, Charlie will at least “probably never.”

What can be done? How can you be honest with your patients without sending the message that all hope is lost?  Caregivers,  how can we learn how and what to ask for, at our appropriate time and stage in the journey?

Physicians:
1. When interacting with a family that is facing a life changing diagnosis, asking you for evidence, show them how to search for and interpret scientific studies. Watch this space for an updated blog post about this very topic.

2.  Find a peer in the community (or even send them to me–I do this all the time). After the initial shock has worn off, when parents see me living my life with four happy kids and a successful career while, yes, managing the daily needs of a severely disabled child, they start to see themselves in me and slowly accept their new normal.

3.  Always balance data with a sense of wonder. I had a neurologist once tell me to never trust a doctor who says she knows exactly what’s going to happen developmentally, because if you’ve been doing this long enough you have seen exceptions.  Explicitly state, “I am very definitely NOT saying ‘never.'” And then share honest stories of the spectrum of outcomes that you have observed.

Caregivers:
1.  Be up front and clear about where your head is at when it comes to looking too far into the future.  It’s OK to tell your doctor, “Look, I am still processing all of this.  I want to focus on tomorrow and next week, not twenty years from now.” 

2.  Set realistic expectations on the information that your doctor can provide. Do some homework on the nature of literature in your condition and how to read a paper. I am writing an updated post on how to do this kind of research - watch this space. These are the same studies your doctor is looking at. If it’s a very rare condition, your doctor might not have a lot of good information and can only compare with the few other patients he or she has seen. Those patients, and their circumstances, may be very different (and worse) than yours, so take heart.

3.  Recognize that literature is often several years old. It takes a long time and a lot of money to gather good data on long-term outcomes.  In other words, we won’t know how all of the latest treatments, early diagnoses, therapies, etc, have impacted our kids for maybe 20 years. We just don’t know, so a doctor’s best guess is often just that, a best guess.

4.  Surround yourself with resources.  I am writing an updated piece on how to create an advocacy toolkit because I know that the most optimistic families have resources and support. Watch this space for that toolkit.

5.  It it’s not a good fit, it’s OK to say so and move on. I switched neurologists early on when I felt like he was giving up on Charlie. It was definitely the right decision, but I now understand that the reality is that he likely thought he was doing the right thing, but his bedside manner was rough because he had a huge caseload of very sick kids, was competing to become the chair of his department, and probably never got any sleep. I was SO ANGRY with him for so long, and then one day bumped into him at a conference while I was pushing Charlie in a wheelchair.  He gazed down at Charlie with a haunting look in his eyes, and I realized I wasn’t the only person still traumatized from watching my baby suffer.

If you think you have found a good doctor, try to be gentle with them.  If the relationship is worth saving, try to remember that your physician has to deliver life-altering bad news to MANY families just like yours, day after day, week after week. Like you, they are only human, and want nothing more than for your child to prove them wrong.

Trauma-informed collaboration: a practical guide to psychological safety in patient engagement

I took the photo above while sitting with my son, Charlie, during a recent EEG visit. I answered work emails and texts from that room, and many of the colleagues who heard back from me had no idea where I was. In fact, the week before this admission, when I was dealing with all of the seizures and logistics of the EEG visit, I silently absorbed that stress while working 14-18 hour days and leading a large grant submission. That is a choice I make. I am open with my colleagues about my life, and for the most part want to be treated no differently than anyone else, with no fuss made over it. Most high performing people in my position handle it exactly this way. We quietly carry a great deal.

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I am writing this during an uptick, a stretch of heightened caregiving and activity; Charlie is having near-daily life threatening seizures and may need a third epilepsy (brain) surgery. It feels like a good moment to revisit best practices, both in patient engagement and in the trauma informed, psychologically safe ways of working that would help people like me. None of this is unusual. A great many working parents are raising children with chronic and serious illnesses while holding down demanding jobs, so the guidance below applies well beyond patient engagement, across many communities and workplaces.  Some of those parents run the patient advocacy groups and research programs you need to engage with for your advisory boards and patient-centered research projects.

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What prompts this now is a recent experience in one of the multiple “patient centered collaborations” in which I work. I found myself in a collaboration where some colleagues were very insensitive to what I was managing outside of work, and the process created stress and conflict far beyond what was required of the actual task. I have spent roughly fifteen years helping to develop patient engagement guidelines, and this was the first time in my career that I had to ask, directly, to be treated according to the same practices I usually apply on behalf of others. Given how rarely I ask for anything, it was stunning to have to explicitly and repeatedly request that off ramp. I could have walked away in frustration. Instead I decided to look inward and treat the moment as a rare vantage point, because for once I was not only an expert in patient engagement but also the person who needed the accommodation and did not get it. That double view is what this piece tries to put to use.

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That experience is a version of something I see often. When a person with lived experience and/or expertise in patient engagement raises concerns that a project is not well suited to the stakeholders in question, or does not follow sound engagement practice, the objection is sometimes read as that person being difficult rather than as a professional flagging real risk. Those concerns are rarely precious or obstructive. They are the red flags that experience teaches you to watch for, the ones that often decide whether a collaboration holds together. There is also a science behind this, a body of literature that documents these practices. A big heart and a love for people with lived experience do not, on their own, make someone an expert in these collaborations. This time I happened to be both the person raising the concerns and someone carrying a heavy personal load. Being on the receiving end of the dismissal, rather than the one applying the guidelines, made something clear: the reaction it produced in me was the same one I have watched surface in partnerships that look strong and then deteriorate quickly. Feeling unheard is often what precedes the breakdown.

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After I finally hit my limit, after weeks of trying to tactfully explain myself, I came unglued. I should not have been pushed that far, and now I am labeled as the one who melted down in front of my colleagues, violating the one thing I am most protective of: my composure, my ability to keep a lid on grief that is overwhelming, chronic, and now closing in on two decades. I realized something in that moment: the professional difference of opinion was a very small piece of this. All of those hardships and slights and insensitivities that I swallow and ignore on a daily basis result in me sorting people and organizations into two buckets: those that are part of the machine that makes my life as a caregiver harder (school districts, insurance company, doctors who do not listen, mail order pharmacy, policymakers who don't do the right thing) and everyone else. The very worst group for you to be in is the group that I think I can trust, who I tag as not only "everyone else" but a rare "good one," and then you betray that; you are never getting off my enemies list. So by being so terribly insensitive to my needs, I have now tagged you and removed you from my path.  I need to stop the emotional bleeding, as once I start I cannot stop. I cut you off to protect myself. In this moment of reflection about my own personal experience, I had an epiphany: I think this explains a lot about failed collaborations with people with lived experience.

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It also clarified how we tend to frame this work. Patient engagement is often approached as us vs. them: here is the special group, here are the accommodations they require, offer a remote option so caregivers do not have to travel, make sure they are paid for their time, and the obligation is considered met. When a partnership sours anyway, we study the checklist and wonder what went wrong. The answer usually runs deeper. The framing itself, professional colleagues on one side and the patient community on the other, is part of the problem. A more useful premise is that every collaborator may be carrying something that others cannot see. Someone might be going through infertility, or feeling self-conscious about their weight, or grieving a college rejection, or quietly moving through a divorce. If psychological safety and trauma informed practice were simply how we worked, the need for special accommodation would shrink, because we would already be doing the right thing. So what follows is written for the psychological safety of everyone at the table, not only the patients, because you rarely know what any collaborator is going through.

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Patient engagement works best when the people at the table feel safe enough to do their best thinking. Many of the people organizations most want to involve, including patients, caregivers, and colleagues living with chronic illness or disability, carry burdens that rarely show on a call or in a meeting. How collaborators respond to those burdens, especially in charged or high stakes moments, often decides whether the work produces something good or quietly falls apart.

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The practices below take the principles of trauma informed care and apply them to ordinary professional collaboration. None of it is exotic. Most of it comes down to extending, as a default, the same grace people already give to the hardships they happen to find familiar.

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What often goes unseen

A few dynamics tend to operate beneath the surface of this work, and naming them makes the practices easier to apply.

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People hide invisible burdens. Someone carrying a heavy personal load will often say nothing about it, out of a real fear of being seen as unable to handle their work, of being passed over, or of losing standing. That fear pushes many to overcompensate, to work harder and disclose less, which leaves their situation even less visible to the people around them. Caregiving is very expensive and health insurance is tied to employment in the United States. Many families, like mine, rely on one income due to the need for one parent to always be available for caregiving. Sometimes people with invisible burdens think saying no could mean further endangering their family’s ability to meet their basic needs at a time that they need it the most.

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Relatability gates empathy. Teams tend to offer accommodations readily for hardships they can easily picture: a move across the country, a death in the family, a broken leg, and to overlook hardships that are harder to imagine or more uncomfortable to discuss. The less legible the burden, the less preemptive grace it receives, even when it is far heavier. I often feel that a colleague with a long commute, or one just back from vacation and overwhelmed by their inbox, is given more preemptive grace than I am, a mother of four whose son needs round the clock care. I suspect this lack of consideration mirrors our broader policies and societal values.

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Boundaries that go unheard cause lasting damage. When a person signals that they cannot take something on and is pushed anyway, the cost is not only that moment. People who feel unheard, or pushed past a limit, often begin to see the collaborator or the project as an adversary. Once that judgment forms, trust is slow to return. This is part of why tension between stakeholder groups can seem to surface out of nowhere.

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Small dismissals can land with outsized force, and the reason is usually invisible. People who live with a heavy, ongoing hardship often spend real effort managing how comfortable everyone else feels around it. Few colleagues want to hear about a child's illness or a daily medical crisis, so the person carrying it learns to minimize it, to deflect, and to keep the mood easy. That labor is constant and almost never acknowledged. When it is met with a dismissive gesture, an eye roll, a sigh, a show of impatience, the reaction can seem far larger than the gesture itself would explain. It is not really about the gesture. It is the weight of unrecognized effort meeting contempt. This is worth understanding because the people brought into engagement work are usually valued precisely for their lived experience, and being dismissed on the very thing they were invited to offer is often what turns a promising collaboration sharply and without warning.

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Practices that help

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1.     Believe the boundary the first time. When someone says they cannot participate right now, or that a confrontational setting would be too much at the moment, treat it as information, not as an opening position to negotiate. Act on it without requiring a justification.

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2.     Treat substantive warnings as expertise, not temperament. A boundary is not only "I cannot take this on right now." People with lived experience also raise concerns about the conditions of a collaboration itself, and those warnings deserve the same weight. In the rare disease world, for example, a single condition often has several advocacy groups that do not get along, and infighting and leadership transitions are common. When a patient advocate flags friction within or between groups, they are drawing on hard experience of how those dynamics tend to play out. They are saying two things at once: that they do not have the bandwidth to be pulled into the conflict, and, more importantly, that the conflict is a reliable predictor of a collaboration that will go badly. Dismissing this as someone being immature, or unable to work with difficult people, or insisting that things seem fine now, overlooks one of the most useful signals a collaboration can get. Treat the red flag as the risk assessment it is.

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3.     Do not price accommodation in disclosure. No one should have to give a full accounting of the worst parts of their life to earn a basic accommodation. You do not ask a grieving colleague to relive the funeral, or a colleague with a broken leg to prove that it hurts, before you lighten their load. Extend that same courtesy to burdens you cannot see.

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4.     Offer the off ramp before it is needed. Provide the same preemptive grace to less visible hardships that you readily provide to relatable ones. If you would quietly protect a colleague who just moved or lost a parent by not piling on work, do the same for the person carrying something you cannot easily relate to but know is there.

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5.     Assume good faith, especially around boundaries. When a person sets a boundary that touches something vulnerable, the way you respond determines what happens next. Responding as though you assume the worst of them, that they are being difficult or acting in bad faith, makes the moment more volatile. Someone protecting something tender will meet suspicion with their own defenses, and a quiet accommodation becomes a confrontation. Assume good faith. It costs nothing and keeps the situation from escalating.

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6.     Build supports as defaults, the way good design does. This is universal design applied to collaboration. You do not build the ramp only after someone in a wheelchair arrives at the door; you design the entrance so anyone can get in, and the ramp ends up helping the person with a stroller and the delivery driver too. In practice, that means letting people bring notes or slides into a discussion, giving them time to compose their thoughts before responding, and reading the cues when someone is tactfully trying to decline. These supports also help people who are not neurotypical, whether or not anyone in the room has disclosed a reason for needing them. Rolling your eyes at the person who did what they had to do to get through the day takes away a support that quietly serves many people.

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7.     Extend grace, and let it run both ways. People are quick to sort each other into fixed categories, the easy colleague or the difficult one, and once someone lands in the wrong box they rarely climb out. Resist reducing a person to a single bad day, one moment of talking over someone, or one show of more emotion than a meeting seemed to call for. Grace given in one direction tends to come back in the other.

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8.     Recognize the people who already do this well. Many colleagues read the room, notice when someone is at their edge, and ease off without being asked. That instinct deserves to be named and reinforced, not taken for granted.

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What does not help

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A few common responses reliably make things worse: treating a boundary as evidence that someone is being difficult, signaling annoyance through eye rolling or telling a person to stop talking, and offering conditional support. "Let me know if there is anything I can do" means little if the one thing a person asks for, to have something taken off their plate, is the thing you will not do. Support that only appears when it is convenient is not experienced as support.

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What does help, by contrast, is low pressure room to decompress: a short one on one, a private message, a teammate who can tell something is out of character and simply makes space for it.

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Frameworks to ground your thinking

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Two resources translate these ideas into something against which you can hold a project.

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SAMHSA's six principles of a trauma informed approach offer the foundation: safety, trustworthiness and transparency, peer support, collaboration and mutuality, empowerment and voice and choice, and attention to cultural, historical, and gender issues. Most of it comes down to treating the person across from you as someone whose sense of safety you are partly responsible for, even in an ordinary project meeting.

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For something more concrete, the Council of Medical Specialty Societies and the Patient-Led Research Collaborative, with funding from a PCORI Eugene Washington Engagement Award, built a set of scorecards for bringing patient led research into clinical registries. One of the dimensions they score is trauma informed practices: whether a research partner minimizes invalidation and hostility, accounts for participants who are dealing with illness and symptoms, and lets go of the expectation of endless engagement that brings no benefit to the participant. It is close to a checklist for the practices above.

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A short checklist

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•       Believe a stated boundary the first time, and do not ask for a reason.

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•       Pay close attention to the “asks” from people who never ask.

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•       When a person repeatedly offers alternative approaches, take a beat and ask why.

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•       Treat a lived-experience warning about group conflict or instability as a risk assessment, not as someone being difficult.

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•       Never require someone to disclose their hardest circumstances to earn an accommodation.

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•       Offer the off ramp proactively, with the same grace you give to relatable hardships.

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•       Meet boundaries with good faith rather than suspicion.

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•       Make supports the default: notes and slides, time to prepare, low stakes ways to step back.

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•       Refuse to reduce a colleague to one bad moment.

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•       Name and reinforce the people who get this right.

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Built in broadly, these practices improve every collaboration, not only the ones that involve patients. The point is not to walk on eggshells. It is to design the way you work so that the people carrying the heaviest and least visible loads are protected by default, without ever having to explain why.

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Because I am carrying the move across the country, the death in the family, and the broken leg, all at once, every day.

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