Short summary

The Danish eHealth portal Sundhed.dk has provided patients quick and easy access to their own health data over the last few years. This means that cancer patients can access own diagnostic results online immediately and before a scheduled clinic visit with a physician. The diagnostic report may be difficult to understand for the patient and give rise to misinterpretation of the results, which may again cause unnecessary frustration and anxiety. The aim of this study is to explore how cancer patients use and experience electronic access to their diagnostic report, and to identify possible barriers and facilitators from the patient's perspective.

Rationale

The Danish eHealth portal Sundhed.dk was launched in 2003, where patients, primary sectors and hospitals got the opportunity to access and share health data in a safe way. The purpose of Sundhed.dk has been to empower patients by offering better insight and a higher degree of transparency in the health care sector. Patients can access their diagnostic reports through sundhed.dk -  in the beginning with a 3 weeks delay and later, this delay was reduced and finally from September 2017 the delay was removed. This means that all patients, including cancer patients, can access their diagnostic report online immediately when it becomes available and before a scheduled clinic visit with a physician.

However, diagnostic reports that are now available for patients in Sundhed.dk is typically written in a language intended for the referring physician, and it is not described in layman terms. The report can therefore be difficult to understand for the ordinary patient, and it may give rise to misinterpretation of the result. In cases where the diagnostic report includes a "bad" message it may cause frustration and a lot of questions, which cannot be answered immediately, and the patient will have to wait for the planned clinical appointment.

Cancer patients represent a particular sensitive group, who often have many diagnostic examinations within a short period of time. Patients with breast cancer recurrence receive life-long treatment, and they are often followed with diagnostic scans in order to evaluate the effect of the treatment. The diagnostic outcome of these scans is therefore crucial for subsequent treatment decisions, and thus for the single patient's life. Most people feel tense and anxious when they wait for result from a follow-up scan, especially when it comes to patients with recurrent cancer.  We think that the challenges of accessing diagnostic reports by Sundhed.dk are particularly relevant to this patient group.

There is limited literature available regarding cancer patients' perspective and use of electronic health portals for accessing diagnostic reports and even less concerning the ethical aspects of electronic communication.

We aim to investigate how women with breast cancer recurrence use and experience Sundhed.dk in relation to accessing their diagnostic reports and to identify possible barriers and facilitators of Sundhed.dk from the patient's perspective. 

Description of the cohort

This prospective study includes a cohort of women with verified metastatic breast cancer recurrence, who receives life-long treatment and regular diagnostic follow-up scans with either PET/CT or CT. The patients are recruited from a larger diagnostic study conducted at the PET centre, Odense University Hospital, Denmark, where the patients have given their informed consent for being contacted for other research aspects.  

Data and biological material

All included women will receive internet based surveys; furthermore semi-structured personal interviews will be conducted with four women who have experience in accessing their electronic diagnostic reports.

Collaborating researchers and departments

Department of Nuclear Medicine, Odense University Hospital

• Main supervisor, Malene Grubbe Hildebrandt, PhD, MD

Department of User Perspectives, University of Southern Denmark

• Consultant and Associate Professor Marie Konge Nielsen, PhD