What it was like to be the subject of a longitudinal study (2023)

I've been in a NORC longitudinal study since ~1980. It's pretty low maintenance, and they lost track of me for a decade or so (part of 20s and 30s) due to how life goes. First it was just surveys (actually interviews) but just before covid they sent a nurse to draw some blood (they ask for permission before every query, so I was OK with that).

Earlier on they would tell me a little of some learnings from the data, but now it simply goes into some database in Chicago and I guess various people who could use it for some study query it.

Not enough for a book in my case; barely enough for an HN comment!

What are they studying?

My father has been part of the Diabetes Control and Complications Trial (DCCT) [1] and its follow-up study Epidemiology of Diabetes Interventions and Complications (EDIC)

My understanding is that the study has been fairly conclusive in proving that maintaining blood sugar levels as close to the normal range as possible has a positive impact on many of the previously thought "inevitable" side effects of diabetes (like losing your vision, losing feeling in your extremities, kidney failure, etc.).

He's justifiably proud of having helped in some small way improve the outcomes for lots of other folks.

1 - https://pubmed.ncbi.nlm.nih.gov/2882967/

2 - https://repository.niddk.nih.gov/studies/edic/

Has anybody read the book? Is it worth it? Does she find her predictions and were they close, or far off?

My father is in the National Survey of Health & Development study of people born in Britain in March 1946, "the longest continually running major birth cohort study in the world": https://en.wikipedia.org/wiki/National_Survey_of_Health_%26_...

He seems to enjoy it, especially as a retired research psychologist. Every few years he goes to London and they run tests, see how long he can stand on one leg, do various scans etc. They are currently running a sleep study using wearables.

The study also had a 70th birthday party in 2016 for the cohort, which I got to go to as a guest. Apparently very few people have dropped out, so hopefully it's a positive experience for most people.

There's also a book about the study: https://www.amazon.co.uk/Life-Project-Extraordinary-Story-Or...

I was part of a study of bone marrow donors. Basically a short phone call every year. The questions were solely about physical effects, but each time I tried to explain psychological effects similar to PTSD. I have heard similar stories from other donors. The grad students on the phone were sympathetic but as far as I can tell there was no way to push that information up the chain. They had a checklist and that was it.

On this note check out the Up series: follows the lives of fourteen people in England beginning in 1964, when they were seven years old

https://en.wikipedia.org/wiki/Up_(film_series)

Director just died but I hope we get another episode while the participants are still here with us.

Why are we not asked to donate our medical records to science when we pass?

Why are we not asked to open up our medical records to our offspring when we pass?

The whole bodies should be donated (for re use as much as possible, and then research) by default, or even mandatorily, since you don't need it any more after you're dead.

Sadly some people have weird fetishes over corpses and want them handled in various ritualistic ways, which I think holds back progress and quality of human life (through tissue donations). We used some cadaver tissue in a study and had to return it (what was left of it) afterwards!

Later we realized the same doesn't apply to tissue removed from living people for medical reasons, which to a startup made some things easier (and in other ways harder -- typically, healthy tissue isn't removed from living people, thank goodness!)

I was fairly interested until the last few paragraphs where it rapidly transformed into a warning about evil tech multi billionaires, their companies and parents exploitation of children online. Not that that isn't worth discussing, but I was interested in hearing more about her experience in the study as per the article title.

The first questionnaire was given to us in school and they asked about our classes, whether we planned to go to university, things like that. It was long but the school just gave it to us like it was a test (except you had to fill in little bubbles on a form which none of us had ever done before).

There were a couple after HS graduation asking about if I was in university or working, married, income, job, stuff like that. Then I had a gap (was out of the country) and after they asked things like marital status, kids, work, health life satisfaction, etc. Mostly pretty much the same, of course, because how else do you track changes over time. But it's not worth asking 16 yo about marital status -- 99.99% of the answers will be the same. And in the 80s you didn't ask about sexual orientation.

The somewhat recent blood test was the first time I'd been asked that. I presume that will continue through end of life. (Coincidentally an old classmate died last week...basically so far I've only known about a half dozen, definitely less than 10, people my age who have died. But I expect that curve to start bending upwards).

Young HN posters by the sound of it.

Sorry if this is insensitive but I'm curious. Feel free not to answer, what is the PTSD from? I have never had any exposure to bone marrow donation. Is it that you donated and it was painful and/or the whole experience was frightening?

Good chance (part of) your medical records are already being used in some retrospective study, even while you're still alive.

any longitudinal study by definition has to start relatively early.

Note: This applies only to traditional "harvest" surgery and not the new aphereisis method used today.

The surgery itself wasn't great but I was at 80% after a month and 100% after three. No long term effects.

Here's the thing: at every point in the process, interviews, blood tests, health checks, etc, at every point the entire process is explained very carefully and you are told at every point that it is voluntary and you can back out right up the the minute of surgery.

Except. The recipient has their marrow irradiated and killed a week before you show up to donate. So you better make that appointment. Of course all voluntary. It was a real mindfuck of a whipsaw of emotions going in, and then months of zero information after.

It's hard to explain the feeling of holding another anonymous kid's life in your hands. I'd cry for a week every year around that time, and then the survey phone call.

The story worked out for us. I got to meet him a couple years later and was just invited to his wedding.

Just by default should be sufficient. Any further than that puts you at odds with property laws for very little gain.

It sounds like they have a donation-specific experience around it.

But in general, non-emergency surgery is a very common cause of ptsd. It has a lot of the "checkboxes" of pain plus knowledge of powerlessness and lack of agency in the face of impending suffering. The psychoactive effects anaesthesia may play a part too; I've never read anything too concrete about it but some of the sufferers I've known believe that strongly.

In my years in and out of ptsd support groups I have almost always known someone who ended up there from a scheduled, "routine" surgery. A lot of fairly common scenarios can cause it. About half the people I see in there are from car accidents, the rest a pretty even split between sexual assault and childhood abuse. Only ever come across a handful of the "typical" combat veteran type folks, though I understand they mostly have their own networks.

How can someone “own” their corpse?

But I suppose the Henrietta Lacks case is a precedent. A terrible decision IMHO

Thanks for sharing your story.

I was thinking the estate, precisely because that notion is nonsense