Interviews with Cancer Patients Reading their Medical Records Online

When medical records online was launched in Uppsala County Council a few years back many health care professionals were concerned, to say the least. There were for example some very upset discussions especially regarding cancer patients and medical records online, and the possibility to get bad news through a web page.

There were also critical incidents regarding patients reading their test results and getting a cancer diagnosis online, as in the screen shot that is the featured image in this blog post. The article is a Google translation from Swedish, and the original article can be found here.  The news article describes the story of a woman who got to know about her the return (?) of her breast cancer through logging in at a web service. This specific critical incident occurred in 2015.

So the question is:

Is reading your medical records online really a good idea for patients with diseases such as cancer? What do cancer patients in general think about the system? Is it useful for them?

As a result of this turbulence around medical records online and cancer patients DOME did an  interesting study with interviews with 30 cancer patients. I did this study together with my PhD student Hanife Rexhepi (I’m co-supervisor), Associate Professor Rose-Mharie Åhlfeldt and Professor Isto Huvila. We presented this study at Vitalis, and you can see the presentation here (in Swedish), we wrote a Swedish white paper on the study found here and also a journal paper in the Health Informatics Journal.

In the study we found that some cancer patients use the system on a daily or weekly basis for several reasons:

  • They are curious about what it says in the text, and in the test results.
  • To prepare for the next appointment with a physician.
  • To get a feeling of being in control when it comes to their decease.
  • As a memory aid when looking at what has happened so far with their decease.
  • To be able to understand what the physician said in the meeting.
  • To read up on the latest test results, and to compare to previous results.
  • To get the exact information, and not an interpreted oral version.
  • To decrease the waiting times in health care

One of the worries that health care professionals have is that patients would become worried, and some patients said that of course it is worrying to read about the decease sometimes.

“If we can handle to live with all these deceases- we can handle to read about them too”

In our study almost all patients choose the option to see everything at once in the system and not to wait until the information is signed by a doctor. This is also confirmed by statistics that say that 98% of all patients want to read as soon as possible, and do not want to wait for the information to be signed by a doctor. Many patients in our study describe the waiting for results as the most difficult part of being ill, as one patient said:

“For me it is good to read. It is much worse to go around and wait. No one wants to tell you anything.”

One of the more controversial results from the study was that some patients preferred to read about negative development in their cancer, or the occurence of cancer online, as in this quote:

I personally want to know. Even though it is tough. It is not less tough to get to know it a few days later, or by someone who wraps the bad message inside mumbo jumbo words to soften it and says that it is not too bad and so forth. No, I want straight answers.

One should note that all 30 patients in the study thought that being able to read the medical records online is a good reform, and that the system should exist as a possibility for those patients who want it.

I have had a meeting the Oncology department at the hospital to discuss the possibility of doing a follow-up study on patients reading their medical records online. Some of the things we want to understand is the use and non-use of the system, and how it affects patient empowerment. We also need to do a follow up study because there is a risk that the people that we interviewed were early adopters of the system, and we want to find out what the mature users think.

So there are more studies to come in this interesting area!

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