Access to Health Data (NO0041)

The services shall be available to the citizens on the national health portal,
helsenorge.no.
Through "My health" on the Internet, patients and users should be able to access to
their own health records. Through secure channels, it will be possible for citizens to
have an electronic dialogue with health personnel. Self-service solutions for electronic
scheduling and renewal of prescriptions and electronic dialogue with health personnel
will also be offered.
Citizens shall also have access to information about available services and treatment
quality. This information will be available on helsenorge.no and give the citizens
assistance in finding health and care service that suits their needs.
Public, non-personal data from the health sector shall be made available on
helsenorge.no to support development of user-adapted, Internet-based health services
and apps that the public sector will not be capable of developing alone.

6. Access to health data

Commitment Text:

One important health policy goal is to ensure each individual’s opportunity to be involved in processed and decisions concerning their own health. Easy and secure digital services shall make contact with the health and care service easier and contribute to the citizens’ perception of the service as accessible and comprehensive.

Citizens shall have secure and easy electronic access to their own health records, Self-service solutions and electronic dialogue with health personnel. […]

The services shall be available to the citizens on the national health portal, helsenorge.no. Through “My health” on the Internet, patients and users should be able to access to their own health records. Through secure channels, it will be possible for citizens to have an electronic dialogue with health personnel. Self-service solutions for electronic scheduling and renewal of prescriptions and electronic dialogue with health personnel will also be offered. Citizens shall also have access to information about available services and treatment quality. This information will be available on helsenorge.no and give the citizens assistance in finding health and care service that suits their needs. Public, non-personal data from the health sector shall be made available on helsenorge.no to support development of user-adapted, Internet-based health services and apps that the public sector will not be capable of developing alone.

KEY IMPACT BENCHMARK
Services are available on helsenorge.no. Electronic identification (eID) with high level of security is an important component in order to establish digital services for the citizens.

ACTIVITIES
Services are to be established and further improved on the health portal helsenorge.no. Collaboration between the Directorate of Health, as owner of helsenorge.no, and the health care provider’s organisations is necessary to provide access to patient records.

Responsible institution: Ministry of Health and Care Services

Supporting institution(s): Directorate of Health

Start date: 1 January, 2013              End date: 31 December, 2014

Editorial note: The text of the commitments was abridged for formatting reasons. For the full text of the commitment, please see http://bit.ly/1QlVIja.

Policy Aim

The activities referenced in this commitment are part of a broader effort by the Norwegian government to reform Norwegian health care policy and implementation. These reforms focus on reducing waiting times for access to health care and improving the quality of health services. They are related to the political platform of the main governing political party in Norway, ^{[Note 35: “Sykehustalen 2015,” Ministry of Health and Human Services Press Release, Government of Norway, January 7, 2015, http://bit.ly/1Vt00Ib.]} but do not directly relate to any specific policy challenges that the IRM researcher found to be raised by civil society or Norwegian media.

Status

Mid-term: Substantial
The Ministry of Health and Care Services took a number of steps towards fulfillment of this commitment, such as user access to electronic prescriptions and establishing access to personal health data online. However, the IRM researcher was not able to determine whether electronic identification (eID) solution was launched.

End-of-term: Substantial
According to the focal points for this commitment in the Ministry of Health,^{[Note 36: Bjørn Astad, email correspondence with Christopher Wilson, March through September, 2016. On file with researcher.]} significant progress was made on all benchmarks in the course of 2015. Steps taken included piloting digital dialogues with general practitioner health care providers, piloting electronic prescription management, and providing access to patient health records in three of four health regions. However, the IRM researcher’s investigation into personalized services (e.g., access to records and communication with health professionals) on the health portal suggested that these services were only available to two of the four health regions in Norway, as shown in the screenshot below.^{[Note 37: Screenshot captured September 9, 2016.]}

Aggregate and de-personalized statistics at the national level are also published on the national health portal and through an Application Programming Interface to support the development of user-adapted, internet-based health services and apps. The IRM researcher was unable to independently confirm whether the eID solution has yet been launched, despite repeated requests for information to commitment focal points.

Did it open government?

Access to information: Marginal

This commitment aims to enhance access to information for everyday citizens and patients, and patient representative organizations interviewed in the preparation of this report gave generally positive feedback on the functionality and accessibility of the national web portal.^{[Note 38: Kjetil Berg Veire, interview by Christopher Wilson, phone interview, September 9, 2016 and Tove Hanche-Oslen, interview by Christopher Wilson, phone interview, September 9, 2016.]} However, it was repeatedly noted in interviews with the National Association of Norwegian Patients (Norsk Pasient Foreningen) that they have received little feedback from their constituents regarding the portal and stated that this may be because it is not well known or widely used.^{[Note 39: Ibid. ]} Patients’ rights advocates emphasized that many users of the national health system are not well equipped to use digital solutions and often feel overwhelmed by the amount of information currently available online.^{[Note 40: Ibid.]} The question was also raised as to whether the provision of centralized information on helsenorge.no was the highest priority for transparency and openness in the health sector in Norway. A representative of the National Association of Norwegian Patients further estimated that the vast majority of patients with whom they have contact (approximately 80%) express that they do not feel to have been seen or heard by the national health apparatus, which is often experienced as opaque and difficult to access. A simplification of the language and procedures involved in accessing health care was suggested as a higher priority for openness in this sector than the provision of centralized information and digital interaction. Officials in the Ministry of Health did not respond to the IRM researcher’s requests for statistics on usage of the data portal.^{[Note 41: Email correspondence with Bjørn Astad, Director General - eHealth, Norwegian Ministry of Health and Care Service(March-September 2016). On file with researcher.]}

Carried forward?

This commitment has not been carried forward in the Norwegian government’s third national action plan, which is available on the OGP website.^{[Note 42: ”Norway’s third action plan Open Government Partnership (OGP),” Ministry of Local Government and Modernisation, accessed September 4, 2016, http://www.opengovpartnership.org/wp-content/uploads/2001/01/Norway_2016-17_NAP.pdf.]}