Today, it is possible to find medically related websites and communities to help obtain more information, find support groups and receive guidance for almost any specific disease. A group from the Netherlands recently developed a website and portal for young adults with Juvenile Idiopathic Arthritis (JIA) and conducted a study to see how feasible it was to use these resources. The website was created to include useful information about the disease and the portal was created to link to each patient’s own medical record and allowed them to consult a clinical nurse as well as track their progress. The goals of the study were to determine how users of the website and portal felt about the perceived usefulness of both, the ease of use, and the intention to reuse the resources in the future.
The study used recorded interviews with 13 new users of the website, all diagnosed with JIA, and all within the ages of 16-25. Samples of questions that were included in the interviews are listed below. These were adapted from the “technology acceptance model” (TAM) that has previously been established to help predict the acceptance of new innovations.
- Did you visit the site/portal with a specific reason?
- How useful was the website for you?
- Can you describe any drawbacks or benefits?
- Would you revisit the website/portal again?
The results of the study showed that 12 of the 13 patients visited the website multiple times, and one had only visited once. The main reason patients revisited the website was to find specific information or to read about the experiences of other patients. The informative videos, as well as the patient experiences on the website were the most useful aspects reported in the study. Although most patients reported that they already knew most of the information provided on the website, it was useful to reinforce what they already knew. They also thought the website was useful for giving information and explaining their disease to others.
The most important indicator to determine if new innovations will be accepted is the intention of users to re-use that technology according to TAM. When asked if users would re-visit the website, half indicated that they would. The others indicated they would if there was new information added to the website or if their situation changed.
As for the portal, all 13 participants used the portal. Most did not use the consult service or the tracking service. The 4 patients who did use the consult service stated that it made communication with the hospital easier. The main usage was via the patient’s records to understand what was written at previous visits to the doctor’s office. Most users did not want to use the self tracking services and some stated they would only if their physician asked them to. All stated they would re-use the portal, most for the access to their medical records and for using the consult services.
This study shows initial data on what aspects of online medical resources young adult patients find most useful. These include the ability to view their medical records from previous doctor visits as well as having the ability to more easily communicate with their clinical team via e-consult services. However, this study is limited in value by the small sample size of only 13 users. The interview method used could also result in more subjective responses and bias compared to a survey format. It would be important to conduct this study when there were more users and the participants of the study represented more of the JIA demographics.