A few days ago an article based on the national patient survey study on patient accessible electronic health records in Sweden was published in Health Informatics Journal. The article, “Online electronic healthcare records: Comparing the views of cancer patients and others” focuses on differences between cancer patients and other patient groups when it comes to attitudes towards and experiences with patient accessible electronic health records (PAEHRs). The areas covered in the article are, among others, involvement in the care process, communication with healthcare professionals and reasons for using PAEHRs. In total, 2587 patients answered the survey and 347 of the respondents had a cancer diagnosis. My colleague Hanife Rexhepi, from University of Skövde, led the work with this sub-study together with me. Our colleague Isto Huvila, from Uppsala University, also took part in the work.
In the article we present several findings from one of the very first large follow-up studies in Sweden about the effects of PAEHRs for cancer patients. Some of the key results are:
- Cancer patients are generally very positive towards the possibilities that PAEHRs offer
- Cancer patients use the PAEHR for getting an overview of their health status and for preparing for doctor’s visits to a significantly higher degree than other patients
- Cancer patients experienced, to a significantly higher degree than other patients, that the PAEHR has helped them in their communication with medical staff
- Cancer patients discuss the PAEHR and its content with medical staff to a significantly higher degree than other patients
- Cancer patients experienced, to a significantly higher degree than other patients, that the PAEHR has a positive effect on their involvement in the care process.
The article is published open access here, where you can find more results and details about the study. As usual, a press release will also be published about the study – this time by Örebro University. If you want to read about some overall results from the national patient survey (not focusing on e.g. specific patient groups) I recommend you to read this open access publication. You can also read about results regarding effects of PAEHRs on the work environment of oncology healthcare professionals here.
Here is the recently published article’s abstract:
This study investigates differences in attitudes towards, and experiences with, online electronic health records between cancer patients and patients with other conditions, highlighting what is characteristic to cancer patients. A national patient survey on online access to electronic health records was conducted, where cancer patients were compared with all other respondents. Overall, 2587 patients completed the survey (response rate 0.61%). A total of 347 respondents (13.4%) indicated that they suffered from cancer. Results showed that cancer patients are less likely than other patients to use online electronic health records due to general interest (p < 0.001), but more likely for getting an overview of their health history (p = 0.001) and to prepare for visits (p < 0.001). Moreover, cancer patients rate benefits of accessing their electronic health records online higher than other patients and see larger positive effects regarding improved communication with and involvement in healthcare.