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Improving patients' access to their own records

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
NEJM article 21st January

As patients strive to manage their own health and illnesses, many wonder how to get a copy of their health data to share with their physicians, load into apps, donate to researchers, link to their genomic data, or have on hand just in case. To seek diagnosis or better care (see table Selected Reasons for Pursuing Patient-Controlled Data.), many patients are taking steps outside traditional doctor–patient relationships. Some join 23andMe to obtain genetic information. Others bring data to the Undiagnosed Diseases Network at the National Institutes of Health (NIH). Patients are coalescing with others with the same disease in what the Patient Centered Outcomes Research Institute calls patient-powered research networks. But such patients have found no easy way to get copies of their electronic health records (EHRs).

More here.

The UK's NHS has the aim that
by 2018 every citizen will be able to access their full health records at the click of a button, detailing every visit to the GP and hospital, every prescription, test results, and adverse reactions and allergies.
to which my GP expressed scepticism, perhaps partly because our governments have a history of delivering late (or not at all) on their promises.

I am currently waiting for copies of scan reports from 2014, having now had to phone three times. (I didn't ask in 2014 but more recently, as I try to make sense of my conflicting diagnoses, the doctors having appeared to give up trying).

Here, if one asks for extra tests, or copies of results, one is commonly made to feel that one is asking for the moon. I expect that eyebrows would hit the ceiling if I asked for copies of my actual scan images.

I wonder why doctors find it so strange that patients want to know what is going on in their own bodies? Are they not interested in these things? Are they a different species?
 
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MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I am currently waiting for copies of scan reports from 2014, having now had to phone three times. (I didn't ask in 2014 but more recently, as I try to make sense of my conflicting diagnoses, the doctors having appeared to give up trying).

Here, if one asks for extra tests, or copies of results, one is commonly made to feel that one is asking for the moon. I expect that eyebrows would hit the ceiling if I asked for copies of my actual scan images.
which I would rather like to do, having now compared scan reports from 2014 and 2015, the first reporting
Normal study. No haemorrhage, collection, infarction or mass lesion.
and the second reporting
numerous old lacunar infarcts in the basal ganglia on the left, these were seen on the MR from 2014.
Doc said that perhaps the first report meant no new infarctions. Not satisfied with such vague assumptions, I asked him to check. According to him, a third person said that the infarcts referred to in the second report were indeed present in the earlier scan.

Considering that I had been rushed in the second time with stroke-like symptoms, it is just a little bit important that things are recorded accurately...

And the 2014 neurologist had told me that I probably had migraine. So I assumed that the GP had been notified of this, and that it was in my records. It appears not. No official diagnosis?

If this is in any way representative of medical record-keeping, I would expect a lot of resistance to letting patients see them!