Analysis of the care plan management, guidelines and handover procedures in the two clinical partner institutions has resulted in a set of recommendations for the PICASO platform.
The PICASO platform is integrating data from the various healthcare professionals that a patient is in contact with to support the sharing of data across these sectors and obtain coordinated care plans, tailored to the need of the individual patients. Trial sites are the University Hospital of Tor Vergata in Rome and the University Hospital of Düsseldorf who have started identifying where and how the PICASO system can be evaluated in the two clinical trials, involving patient groups with Parkinson’s disease and Rheumatoid Arthritis.
During initial discussions, the following recommendations for PICASO functionalities surfaced covering data capture, visualisation and exchange:
- PICASO shall aim at supporting the caring physicians to follow the various available guidelines by providing data that are prerequisites for the fulfilment of the guidelines and that are rarely always collected by the specialist alone;
- Alerts and events are highlighted in the graphical user interface when entering the PICASO platform so that the healthcare professional becomes aware of new entries;
- Automatic check of available data for risk assessment issues as well as a list of what data are missing before risk assessment can be completed;
- Risks are made available to all relevant, accredited healthcare professionals so care is taken for the patient in whatever setting she is in. The new data generated would then be available in the next step to others, and thus allow timely decision support;
- Visualisation of patient data from the various sources should be readily accessible for the clinician and easy to digest during appointments;
- Data exchange should happen electronically instead of being paper-based.
In addition, the Italian trial stresses the importance of giving informal carers, such as relatives, access to relevant information including medication plans, clinical appointments and home monitoring data since in Italy, the relatives play a central role in the care of the older generation.
The recommendations have resulted in a range of requirements which are continuously processed, considering the aims of the project.
Patient empowerment and protection
To protect the rights of the patients in the trials, informed consent from the participating patients is acquired to exchange their data among healthcare professionals and to enable them and/or their informal carers to visit the PICASO platform regularly and see their data.
The increased knowledge and visibility of one’s own data and health status are central steps towards empowering the patient, making him or her more involved in the decisions;
– The patient should be able to have control over his or her personal data, determining who has access to what information and when. However, the patient also needs to know the implications; if data are not available due to the patient restricting the sharing of data, certain guidelines and care plan recommendations cannot be fulfilled, explains Senior Consultant, Trine Sørensen from In-JeT ApS, who is Ethical Manager in PICASO.
PICASO follows standard ethical principles as well as current legislation when dealing with real patients. An ethical board has been appointed to ensure that the PICASO project trials are executed in an ethically sound manner and in accordance with relevant national and international ethical and legal requirements for trials involving real patients.
– The ethical guidelines in PICASO are based on the main principles of respect, beneficence, justice, confidentiality and privacy which all project partners have committed to honour, says Trine Sørensen.
You can read more about PICASO work on ethics and protection of the patient in the deliverable D3.3 The PICASO Ethical Guidelines.