The Online Patient Health Record, Does It Cause More Question Than Answers?
There has been some talk about online patient health records and how the patient can now be better informed and take better ownership of their health now that their health information is so easily available. However, does the ability to access the information make us better and more informed patients or does it have the potential to confuse us even more?
Last month my husband went to the doctor for a yearly physical. He had no health complaints, he felt healthy and fine. The doctor and he both thought it would be a good idea to do a few tests to establish a base line for the future. Many of those tests were done while he was there and the doctor provided him with feedback on how he fared. However, the blood test had to be sent to the lab and he had to wait for the results. The doctor mentioned that the nurse would call him with the results, but if he wanted to he could also sign up to access his health record online and see the results as well.
My husband is a web developer and viewing things online, whether it is his bank account, Netflix account, or his health records is right up his alley. He registered and activated his account and promptly forgot all about it until the nurse called and left a message on the phone to call back regarding his blood test. He got the message after work and after the doctor's office hours so he naturally went online to view his blood test. What he saw was a bunch of abbreviations and number values, all of which meant absolutely nothing to him.
His mother, mother in law, and his aunt are all nurses. His wife is a medical librarian. What does he do? Does he call the medical professionals in the family who might be able to help him? Nope. He goes online. Does he ask the information professional who lives with him about some good sites? Nope. He did what many people do, he Googled it. In his attempt to read the results he looked for what would be the normal values for his test. In the process he noticed that some of his numbers were slightly on the low side or the high side of "normal," and one or two numbers were "barely" on the wrong side of normal. He wanted to know what that meant and what could have caused him to fall outside of the normal range. Thus began his brief bout of cyberchondria.
He found every reason for each set of values from diet, weight gain/loss, hormones, to all sorts of illnesses. It was only after he spent a couple of hours on the computer did he mention to me that his blood test results were available online and that he was diagnosing himself. Feet propped up, beer in hand, he finally confided that he might as well call the nurse tomorrow to hear what she had to say because he couldn't make head or tails out the test results. He said if he looked any more at what the Web was telling him he would be convinced that his lab results said he was most likely going through menopause and suffered from dwarfism.
Sure enough the next day when he called the nurse she said his test results were normal and she answered all of his questions regarding what he thought were some slightly high/low numbers. For all purposes he was healthy and normal.
Not only was he normal physically, but I think he was more normal than you realize. According to the Pew Research Center, he did what 8 million other consumers did, he consulted Dr. Google. Unlike many other American consumers, he had three health care professionals in the family, yet he still chose to go online and do health research for a few hours rather than picking up a phone and calling nurse mom for a few minutes.
This made me sit back and think a little bit. Did having access to his online patient health record make my husband a better informed patient or did it just muddy the waters? In fellow medical librarian blogger, EagleDawg's post on the acronym craziness, she feels the big question is whether patients even really care about PHRs. She directs us to The Health Care Blog's post, Google Health and the PHR: Do Consumers Care?, which states "What’s missing from all of these conversations is the elephant in the room: Do consumers really care about having online personal health records?" Prior to his doctor's visit my husband didn't care about having access to his online medical record. I think if you asked him, it didn't even make it to the bottom of his list of priorities. However, when there was something on there that confused him, it certainly shot to the top. Not having patient educational resources available to explain the results just created more anxiety and work than if he didn't have online access and had to wait to call the nurse.
Which brings us back to EagleDawg's comment about medical librarians and the EMR/EHR/PHR, "I think medical librarians need to have an increased role in EMRs, EHRs & PHRs because I'm not convinced other entities are looking at things from the perspective of patients as more than sources of data and revenue. We are experienced not only in information organization, but in information-seeking behavior and consumer health literacy and I'm not hearing much about how these are being incorporated in PHRs or patient-accessible EMRs and EHRs." The EMR and PHR area is still very new. I think we are going to see some competitors dropping off or being absorbed in the following years. But, because it is a new area, it makes it even more important for designers as well as medical librarians and consumer health librarians to work together to provide a record that minimizes confusion and maximizes patient involvement and understanding. Access to quality patient education materials within the record is part of that equation. Doctors already complain about patients self diagnosing through Dr. Google, an online PHR without any patient ed. resources is just going to make it worse not better for the patient as well as the doctor.