SUSTAINS publications overview

This page explains, in our own words, what the EU project SUSTAINS did and published. The project used this domain from 2012 to 2016. The project’s own documents are not hosted here. Where an archived copy exists, we link to the Internet Archive.

The project in brief

Full name	Support USers To Access INformation and Services
Programme	CIP ICT Policy Support Programme, call CIP-ICT-PSP-2011-5, pilot type B
Grant agreement	297206
Duration	1 January 2012 to 31 December 2014
Total cost	EUR 8,985,111
EU contribution	EUR 3,495,996
Coordinator	Region Uppsala (then Uppsala County Council), Sweden
Partners	17 organisations plus the coordinator, in Belgium, Denmark, Estonia, Finland, Greece, Italy, Slovenia, Spain, Sweden and the United Kingdom

Source: CORDIS.

What it set out to do

SUSTAINS wanted patients to be able to read their own electronic health record online and to use related services such as booking appointments, renewing prescriptions, messaging clinicians and entering their own data. It built on regions that already offered some of this, above all Uppsala in Sweden. The project named three reasons: patient empowerment as the primary aim, better clinical outcomes and record quality, and more efficient use of healthcare resources.

Eleven pilot sites

Each pilot had its own work package (WP6 to WP16): Uppsala County (Sweden), Veneto with ULSS 8 Asolo (Italy), Aragon (Spain), the Basque Country (Spain), Estonia, Scotland (UK), Central Greece, the Region of Southern Denmark, Norrbotten (Sweden), South Karelia (Finland) and Slovenia.

Results reported at the time

• Uppsala opened online record access to the whole county in November 2012. By spring 2014, about 50,000 people had logged in around 250,000 times (European Commission, May 2014).
• In the Basque Country, all planned services were live for about 2.2 million residents by mid-2014, with more than 2.8 million online bookings. Estonia’s national patient portal had more than 66,000 unique users (same source).
• The patient empowerment survey compared answers before and after at least 12 months of use. According to the European Patients’ Forum, it did not show a statistically significant change in empowerment. However, interviews and focus groups suggested that the services improved understanding, sense of control and participation, most clearly in communication with clinicians. How the survey was designed is described on the page about the 2013 questionnaire (D3.2).

Public deliverables

The project website listed 65 public documents by mid-2015. The main ones:

Area	Deliverables
Final report	D1.10 Public final report
Evaluation	D3.2 Questionnaire for patient empowerment assessment; D3.5 Questionnaire for professional user satisfaction; D3.8 Intermediate and D3.10 Final pilot evaluation report; D3.11 Assessment of patient empowerment; D3.12 Deployment plan; D3.13 Professional user satisfaction; D3.14 User acceptance
User needs	D4.1 and D4.3 User requirements recommendations; D4.2 and D4.4 Use cases
Security and privacy	D5.1 Report on security and privacy issues (three versions); D5.2 and D5.4 Recommendations on security and privacy
Pilot evaluations	Final trial evaluation for each pilot site (D6.3 Uppsala to D16.3 Slovenia); D6.4 Uppsala patient questionnaire
Lessons learned	D17.2 and D17.3 Sharing lessons learned; D17.4 Synergic actions towards EU initiatives; D17.5 Report on non-EU initiatives
Dissemination	D2.1 Dissemination plan; information cards in seven languages; pilot leaflets; final conference

Only some of these files were saved by the Internet Archive. The full list as it stood in July 2016 can be seen in the archived copy of the old page.

Peer-reviewed papers that acknowledge SUSTAINS

These papers state in their acknowledgements that they were supported by SUSTAINS:

1. Phelps RG, Taylor J, Simpson K, Samuel J, Turner AN. Patients’ continuing use of an online health record: a quantitative evaluation of 14,000 patient years of access data. J Med Internet Res. 2014;16(10):e241. doi:10.2196/jmir.3371
2. Grünloh C, Cajander Å, Myreteg G. “The record is our work tool!” Physicians’ framing of a patient portal in Sweden. J Med Internet Res. 2016;18(6):e167. doi:10.2196/jmir.5705
3. Grünloh C, Myreteg G, Cajander Å, Rexhepi H. “Why do they need to check me?” Patient participation through eHealth and the doctor-patient relationship: qualitative study. J Med Internet Res. 2018;20(1):e11. doi:10.2196/jmir.8444

Further papers by the Uppsala team describe the same patient access service in Sweden, for example Hägglund M, Scandurra I. Patients’ online access to electronic health records: current status and experiences from the implementation in Sweden. Stud Health Technol Inform. 2017;245:723-727 (PubMed 29295193). We have not yet confirmed that these papers name the project, so they are not listed above.

What happened to the domain

The project website was last archived in November 2016. The domain then expired and was used by unrelated operators, including a French blog about casinos and cryptocurrencies and, in 2025-2026, a web design agency. None of that content is related to the project or to this site, and those pages have been removed for good.