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Currently submitted to: Journal of Medical Internet Research

Date Submitted: Aug 24, 2017
Open Peer Review Period: Aug 24, 2017 - Oct 19, 2017

NOTE: This is an unreviewed Preprint

Peer-Review Me

Needs and perspectives of patients with asthma and chronic obstructive pulmonary disease on patient web portals: a focus group study

  • Esther Metting; 
  • Aaltje Jantine Schrage; 
  • Janwillem WH Kocks; 
  • Robbert Sanderman; 
  • Thys van der Molen

ABSTRACT

Background:

As accessibility to the internet has increased in society, many healthcare organizations have developed patient web portals. These portals can provide a range of self-management options to improve patient access. However, the available evidence suggests that they are used inefficiently and that they do not benefit patients with low health literacy. Asthma and chronic obstructive pulmonary disease (COPD) are common chronic diseases that require ongoing self-management. Moreover, patients with COPD are typically older and have lower health literacy.

Objective:

We aimed to obtain and present an overview of patients’ perspectives of patient web portals to facilitate the development of a portal that better meets the needs of patients with asthma and COPD.

Methods:

We performed a focus group study using semi-structured interviews in three patient groups from the north of the Netherlands who were recruited through the Dutch Lung Foundation. Each group met three times for two hours each, with one week between meetings. Data were analyzed with coding software and patient descriptors were analyzed with nonparametric tests. The consolidated criteria for reporting qualitative research were followed when conducting the study.

Results:

We included 29 patients (55% male, mean age 65 years) with large variation in internet experience: some patients hardly used the internet, whereas others were daily uses. In general, patients were positive about having access to a patient web portal, considering access to personal medical records to be the most important option, though only after discussion with their physician. A medication overview was also considered a useful option. It was expressed that communication between healthcare professionals could be improved if patients could use the patient web portal to share information with their healthcare professionals. However, participants were worried about the language and usability of portals, so it was recommended that language should be adapted to the patient level. Another concern was that disease monitoring through online questionnaire use would only be useful if the results were discussed with healthcare professionals.

Conclusions:

Participants were positive about patient web portals and considered them a logical step. Today, most patients tend to be better educated and to have internet access, while also being more assertive and better informed about their disease. A patient web portal could support these patients. Our participants also provided practical suggestions for implementation in current and future patient web portal developments. The next step will be to develop a portal based on these recommendations and to assess whether it meets the needs of patients and healthcare providers.

ClinicalTrial:

According to the medical ethics committee of the University Medical Center Groningen, this study did not fall under the Medical Research Involving Human Subjects Act.