Participatory eHealth

Yesterday I was at a network meeting for women working with IT and at dinner of course everyone got interested when I said I do research in health informatics (it’s definitely an area that everyone can relate to but don’t necessarily know so much about). I told them about an interesting project in the town we all live and/or work (Uppsala, Sweden) where patients will soon be able to read their electronic health records (EHRs) online. In fact, a friend of mine who works at the hospital already has access to hers (as part of the first pilot group) and I’m a bit jealous of her.

A woman sitting opposite me at table looked slightly uncomfortable and said: “But I don’t think I want to read my health record. What if it says something I don’t want to know?”. This struck me as somewhat odd, so I asked her: “Well, what if there’s something wrong in the record? Have you thought of the consequences that might have? Don’t you want to make sure the correct information about your health is in there?”. The woman looked a bit stunned for a second or two, and then a vivid discussion broke out about patient safety and the potential dangers of our health information systems. This discussion made me reflect on two things:

1. Most people have a very high trust in healthcare, perhaps too high… It’s as if the thought of wrong information being in your health record is unbelievable, and the idea that you as a patient might be able to correct it is even more unlikely.
2. Most people believe that health information systems are much better than they are. There were a lot of disbelief around the table when I described some of the current problems (luckily a representative from one of the biggest vendors of electronic health records in Sweden was sitting next to me and could confirm a lot).

Now, of course, these were healthy women who hadn’t had much contact with healthcare yet; a discussion with chronic patients might have sounded very different. I myself have had few experiences with healthcare as a patient, yet I have already had two incidents where documentation errors were made. The first was when a physician prescribed penicillin to me for an infection, and on my way to the pharmacy I discovered that the prescription was for someone else (turned out the physician had forgotten to change patients in the EHR before prescribing the drug to me). The other was when my second child was born, and we were discharged from the hospital. When we got home, both me and my husband started questioning why our son had not been examined by a physician before discharge. When we talked to the hospital, they checked the record and a physician had documented that he had examined the child and everything was fine. We had to go back to the hospital to get the real examination done, and luckily everything was indeed fine.

Now, both cases above are probably due partly to human error and partly to poorly designed health information systems. The consequences were not major here, but there are plenty of examples were the wrong information in the EHR can lead to serious patient safety issues. At the conference Medicine 2.0 e-Patient Dave, a well-known patient advocate, asked the audience how many had read their health records (perhaps half the crowd raised their hands), and he continued to ask how many of those who had read their records had NOT found any mistakes. Most hands came down rather quickly. These mistakes could be both identified and resolved if patients where allowed to, and willing to, take a more active part in the documentation of their healthcare.

So, my point is – read your health record! Not necessarily because you are curious, or don’t trust your physician, but because mistakes happen to the best of us (even without being overworked and struggling with poorly designed tools) and we as patients are an invaluable resource in quality checking our medical records.