The thing is, it’s hard to come up with ways to package the problem. I’ve tried doing small data science efforts for lesser chronic problems on myself and my wife, recording the kind of biometric indicators that were likely to correlate with our issues (e.g. food diaries vs symptoms) and it’s still almost impossible to suss out meaningful correlations unless it’s something as basic as “eating food X causes you immediate excruciating pain”. In a non laboratory setting, controlling environmental conditions is impossible. Actual rigorous datasets, if they exist at all, are mostly privacy protected. Relevant diagnostic parameters are often incredibly expensive and complex to acquire, and possibly gatekept. The knowledge aspect is almost secondary IMO (after all, in the end, lots of recommendations your doctor will give you are still little more than empirical fixes someone came up with by analysing the data, mechanistic explanations don’t go very far when dealing with biology). But even the data science, which would be doable by curious individuals, is forbidding. Even entire fields of actual, legitimate academia are swamped in this sea of noisy correlations and statistical hallucinations (looking at you, nutrition science). Add to that the risk of causing harm to people even if well meaning, and the ethical and legal implications of that, and I can see why this wouldn’t take off. SMTM’s citizen research on obesity seems the closest I can think of, and I’ve heard plenty of criticism of it and its actual rigour.
The thing is, it’s hard to come up with ways to package the problem. I’ve tried doing small data science efforts for lesser chronic problems on myself and my wife, recording the kind of biometric indicators that were likely to correlate with our issues (e.g. food diaries vs symptoms) and it’s still almost impossible to suss out meaningful correlations unless it’s something as basic as “eating food X causes you immediate excruciating pain”. In a non laboratory setting, controlling environmental conditions is impossible. Actual rigorous datasets, if they exist at all, are mostly privacy protected. Relevant diagnostic parameters are often incredibly expensive and complex to acquire, and possibly gatekept. The knowledge aspect is almost secondary IMO (after all, in the end, lots of recommendations your doctor will give you are still little more than empirical fixes someone came up with by analysing the data, mechanistic explanations don’t go very far when dealing with biology). But even the data science, which would be doable by curious individuals, is forbidding. Even entire fields of actual, legitimate academia are swamped in this sea of noisy correlations and statistical hallucinations (looking at you, nutrition science). Add to that the risk of causing harm to people even if well meaning, and the ethical and legal implications of that, and I can see why this wouldn’t take off. SMTM’s citizen research on obesity seems the closest I can think of, and I’ve heard plenty of criticism of it and its actual rigour.