Measuring patient empowerment - the SUSTAINS questionnaire of 2013

In January 2013, the SUSTAINS project released deliverable D3.2, a questionnaire designed to assess whether giving patients online access to their own health records makes them more empowered. The European Patients’ Forum, one of the project partners, produced the document. This page explains the approach in our own words. The original PDF is not available here, but an archived copy can be found on the Internet Archive.

What the project wanted to find out

Patient empowerment was the main goal of SUSTAINS, but the authors pointed out that the effect of record access on empowerment had not been properly measured before. D3.2 described how the project planned to do this.

Three areas of focus

A review of the literature in spring 2012 produced a framework with three dimensions, each split into measurable indicators:

• Knowledge: making sense of your own health information and condition.
• Control: being able to manage your own care and data.
• Participation: taking part in decisions as an equal partner with health professionals.

A task force made up of partners finalised the indicators in October 2012. The questionnaire was first written in English, tested with native speakers, and then translated into Basque, Estonian, Finnish, Greek, Italian, Slovenian, Spanish and Swedish. The Danish partner prepared a Danish version. Most questions used a scale from 1 to 10.

How the survey was run

Baseline wave	January to May 2013, before people started using the services
Follow-up wave	March to May 2014, after at least 12 months of use
Recruitment	Pop-up invitation in the patient portal or by e-mail
Design	Panel with an anonymous ID where possible, otherwise two cross-sections
Target	4,839 respondents in nine regions (Scotland and Norrbotten did not take part)
Analysis plan	Confirmatory factor analysis, multilevel analysis across regions and waves, plus focus groups in 2014

What the results showed

The findings were published in a later deliverable, D3.11, which the Internet Archive did not save. According to the European Patients’ Forum, the before-and-after survey found no statistically significant change in empowerment. However, focus groups and interviews suggested that patients had a better understanding of their health, felt more in control, and took part more, particularly when communicating with clinicians.

A result with no measurable effect is still valuable: it shows how difficult empowerment is to capture with a questionnaire over a 12-month period. Today, the EU’s European Health Data Space regulation gives patients a right to electronic access, from 2029 for the first data categories (see the EHDS explained).

Back to the SUSTAINS publications overview.