6. Recommendations and principles for use and development of e-Health standards

Recommendations and principles, in this guideline, are limited to apply in improving the data quality and how to support the daily work and reduce burden of healthcare professionals. They are particularly aimed at actors mentioned in chapter 5.

Principles include general aspects which should be followed by many different stakeholders, and which are applicable across many different activities related to the development and use of standards. They are foundation for more detailed recommendations.

Recommendations focus on more specific activities or stakeholder groups, and they should be actionable.

Principles

e-Health standards should be developed and used based on healthcare professional’s needs

Use-case driven development and profiling of standards, reusing standards across different standards organizations and countries to fulfil concrete needs of users

Once only principle – avoid repeated data entry whenever possible

There is no reuse without use – develop and utilise e-Health standards to reward good data entry immediately to the user, e-Health standards should support both documentation and efficient (re)use of information in healthcare professionals’ daily work and effortless workflows

eHealth standards should be developed and used to foster better data quality

Promote common metadata which supports efficient search of information for users (findability, accessibility, interoperability, reuse - FAIR).

Reuse of data in primary and secondary use enabled by e-Health standards reveals quality improvement needs and provides incentives for quality improvement

High quality data for one purpose may be poor quality for another purpose – use features of e-Health standards to enforce quality level of specific sets of data

Identify the most relevant use cases for secondary use of e-Health standards and support them already in the development and selection of e-Health standards for primary use but acknowledge the primary use and usability risks: the secondary purposes should not “take over”

Recommendations for:

General recommendations for all actors

Specify desired outcomes in the development and use of standards.
Reduce healthcare professional data entry effort - reuse and automation.
Use and integrate semantic standards to promote understandability of data (explanations of concepts, terms, code values etc.) and visual presentation-oriented standards for improving consistency in user interfaces of systems.
Educate and train health professionals for high quality data entry and reuse of information enabled by standards instead of educating content of standards.
Promote e-Health standards which are clear in scope, and which provide understandable content and practical path towards implementation.
Collaborate and coordinate the development and re-use of e-Health standards across different types of participants with diverse know-how.

Health professionals and health professional organisations

Define system usability and user interface requirements in terms of user goals in system acquisitions and projects and make use of e-Health standards which support these goals such as data availability and usability.
o Capturing user needs as well as feedback from systems, and understanding workflow of health professionals may require more than surveys: observation of real world data, complemented by interactive discussion of practical goals of users.
Propose and define clear requirements in terms of desired outcomes to system developers and standards developers for improving the systems and e-health standards.
o Desired outcomes should be defined for example in terms of health outcomes, effectiveness of workflows, and data quality
Participate in the development of semantic e-Health standards to promote understandability of data
o For example, definitions and explanations of terms, concepts, and classifications

Health service provider organisations

Involve healthcare professionals and patients in requirements process for procurements.
Acquire systems which demonstrably use e-Health standards, for example
o   supporting clear semantic understanding by users and provide usability benefits
o   supporting reuse of data instead of repeated data entry
o   supporting fluent workflow for users
o   supporting flexible systems which may reuse modules from different vendors in an ecosystem of applications to support responsiveness to change and incremental innovation
Set gradual improvement goals for data quality and utilise e-Health standards for interoperability to assess data quality through key indicators
Consider rewards for high data quality (for users and solution providers)
o For example, immediate feedback and decision support from good data entry, salary compensation

Patients and patient organizations

Participate in SDO’s and projects who are working with e-Health standards
Give feedback about the usability of the digital services for patients and the systems used by professionals, who are using e-health standards.

System developers and vendors

Build user interfaces and use standards for reuse of data to minimise repeated data entry and support efficient retrieval and visualization of meaningful data – limit the burden of professionals – aim at less data but more meaningful, enabling “drilling down” to details.
Support use of standardized terminologies and synonyms, e.g., using terminology services and mappings which can also be standardized.
Make data available and reusable in a standardized format and using open interfaces based on e-Health standards, to enable smart user interfaces including automation of repetitive tasks and decision support.
Move from data entry and documentation towards supporting the workflow of the professionals (correct and minimized information at right point of time, reminders, possibility to find details only when necessary etc.).
Build features in systems which help assessing data completeness, accuracy, timeliness, consistency, and reliability, by identifying key data from structured information standards and providing clear quality indicators for these data.

SDO’s

Involve health professionals to agree on scope, terminology and use cases or high-level business requirements of standards.
Involve relevant stakeholders, especially professionals and vendors, in balanced way, throughout the standards development process.
Consider how any standard development working item affects or supports the needs of the user and data quality, aiming for relevance and “good enough” instead of complete coverage of all possible variations.
Collaborate across SDOs, utilising strength of each SDO – standards should be complementary across SDOs to support real life use cases in health care (availability / information exchange, semantics, processes, workflows, usability, quality).

National authorities / governments

Monitor, evaluate, recommend, and mandate standards which support fluent workflow for professionals. Refine generic standards through user goals, use cases and scenarios.
Utilize standards for guidelines and instructions to support high-quality data entry and consider how high-quality in data is rewarded (economic rewards to service providers or through improved feedback or functionality to users, etc.).
Support innovations in an open ecosystem between different types of stakeholders (vendors, professionals) using e-Health standards as a cohesive factor.
Co-operate with other governments on Nordic and European level to advance e-Health standards towards improved usability and data quality. Learn from other countries that have a proven track record of using e-Health standards to reduce clinician burden.
Select shared, international quality metrics for both data capture and utilization, and make use of interoperability e-Health standards to achieve desired data quality.