SMARAGD

The aim of the SMARAGD project is to develop and test exemplary technical components for the intelligent aggregation and visualisation of information of electronic health data of patients for occupational therapists and physiotherapists. While filling a specific gap in the development of state-of-the-art IT solutions for physio- and occupational therapists, this raises specific ethics and data protection concerns, in particular regarding the analysis of patient’s health data.

Healthcare professionals document every diagnostic, medical and therapeutic action. The documentation is stored and managed in the hospital information system (HIS). This comprehensive and detailed documentation serves as the basis for subsequent diagnostic and therapeutic decisions as well as therapeutic action. The manual, non-automated, and non-filtered retrieval of the numerous and diverse original documents (e.g., X-rays, texts, scans) as well as the repeated retrieval of the same information from patients add to the workload of healthcare professionals.

This is where SMARAGD comes in: the project analyses, develops and tests the intelligent extraction, aggregation and analysis of data relevant for the information needs of occupational and physiotherapists. These data will also be visualised in an intuitive way. As such, the project needs to analyse and gather data from various sources throughout its lifetime. In particular, partners will

• Identify the information needs of occupational and physiotherapists in their HIS, as well as the form of presentation of this data (aggregated, visualised, or in original form);
• Develop technical components extracting, aggregating and analysing patients’ electronic health data relevant for therapists;
• Visualise these data; and
• Test them with occupational and physiotherapists.

As such, partners will conduct the following activities:

• A participatory observation will identify the information needs. Outcomes will be analysed using ethnographic semantic methodology.
• Focus groups with occupational and physiotherapists will identify user requirements and needs for the presentation of data.
• An online questionnaire will analyse the relevance of the outcomes of the ethnographic semantic analysis and the user requirements.
• Based on this information, the technical team will process the electronic health data of patients for the exemplary aggregation of information that is relevant to occupational therapists and physiotherapists.
• Different ways of visualising aggregated electronic health data will be designed, implemented, validated and then documented in a report.
• In user tests, the analogue and digital user interfaces of the components for intelligent aggregation and visualisation of electronic health data will be tested. The feedback from the users will be taken into account when revising the user interfaces.
• Finally, group discussions will clarify the potential impact of using intelligent aggregation and visualisation of electronic patient health data in the clinical setting.

A study protocol for tackling ethics and data protection requirements

The activities described above raise specific ethical concerns. First, humans participate in research. In this context, the informed consent of participants is crucial. All participants will be informed about the aim and process of the study.  Participation is voluntarily, and can be withdrawn at any point without providing any explanation. The time burden on the participants is kept as low as possible.

The participant observation of therapists comes with another challenge: occupational or physiotherapists may be distracted from doing their job during the participant observation. It is also possible that patients are agitated during the participant observation. Sufficient information should be provided in advance to prevent possible uncertainty of the patients.

Data protection and respect of privacy are important ethical issues that need to be considered.  Strict rules for anonymisation and pseudonymisation of data collected through social science research will be followed throughout the study. Furthermore, the analysis of electronic health data aims to include fully anonymised data sets only. However, because of the amount of data needed for the analysis, as well as due to the structure and quantity of the data, it cannot be ruled out that isolated (directly) personal data remain. These isolated data (collateral data) are irrelevant and undesirable for the fulfilment of the research purpose. However, automated recognition and deletion of these individual data is impossible from an organisational and technical point of view due to the size of the data material. As such, the project has defined a strict protocol of handling these data. Furthermore, the legal partners in the consortium are analysing the data protection implications; and a data protection impact assessment has been carried out.

Links

https://www.smaragdprojekt.at/

https://twitter.com/smaragd_projekt

Keywords

Health data, occupational therapists, physiotherapists, data analysis, data aggregation, data visualisation