The Karolinska Institutet MMC sweden lead this study, assisted by The Innovation Fundacio Privada Clinic per a la Recerca Biomedica Barcelona. Interviews were carried out in the two Sweden case study sites to discover the information technology system used to support care coordination and integrated care.
Digital health technology (DHT) is defined as a technology for the collection, communication or analysis of information for health and healthcare, based on digital operations, which includes the internet. Examples include contemporary telephone/cell phone systems, a computer, an internet data base, and a patient biophysiological monitoring device. DHT systems are combinations of hardware and software for specific purposes (e.g. remote monitoring of heart rate) or general systems (e.g. electronic health record system for a health system, or digital fiber network or internet system for connecting providers). DHT is a wider concept than some definitions of health information technology because it encompasses patient web sites, different digital devices, and uses of the internet.
Data were collected from documents and interviews to achieve the WP10 work assignment objectives to:
- Describe the ICT systems and solutions for communication, care planning, monitoring and follow-up identified in the case studies and to analyse their similarities and differences.
- Explore the views of the different stakeholders of the value and usability of the systems and solutions.
- Identify strategies and processes employed by the case organisations in managing their ICT systems and solutions, including how the ICT system was implemented, how it has been developed over time, the part played by users views in the development, and issues in providing access and use by patients.
A sub-report about the technical standards and legal requirements in Sweden has been drafted. Laws require that only authorised care givers can collect, store and have access to the personal data about a patient which they required for the specific purposes of assessment treatment or care of that patient, and then only with that patients permission. Transfer of personal data between “different organisations” is limited.
The review has started of research into digital health technology support for care coordination and integrated care.
Our empirical research describing the DHT supporting care coordination schemes for specific patients and DHT systems supporting integrated care show examples of what some advanced European sites have been able to achieve, but also the limitations of the systems. Our research also reported plans for the next five years which show steps to overcome the challenges and to realize the potential of DHT for lower costs, safer care and improved health which also enhances the dignity and competence of patients and professionals. We provide recommendations for other EU systems to develop DHT to support coordinated and integrated care over the next 5 years.
The four case study sites had developed different arrangements for integrating care for different
patient groups. The digital health technologies supporting these arrangements varied between sites, but had in common the following:
– Electronic medical record systems
- had helped individual providers give better care, by giving them access to information they needed about the patient so as to provide their own care, and allowed them to record and store information for other providers to help others give better care and hence coordination,
- EMRs sometimes did not include nursing or other records on patients clinical care (e.g. therapists records)
- EMRs had the capability to give prompts and reminders for activities which would improve coordination, such as for regular multidisciplinary reviews of care, but the use of reminders and other clinical decision supports was limited,
- did not always provide easy and fast access to information needed to provide quality care to patients, because a) too much information was recorded which the provider viewing the record did not need, and it was difficult for them quickly to access the information they did need, or know where it might be, b) privacy constraints which the system had to embody limited their access, c) the record systems were often not suited to providers work processes, d) the systems sometimes did not work properly (crashed, not up to date, very slow, etc.)
- often were not connected to other records containing important data about the patient, often only provided connections within the same organisation to other electronic records using the same system (e.g. hospital emergency room EMRs not accessible by a psychiatry physician, and a primary health care physician cannot connect to a hospital EMRs, and both usually did not connect to private provider’s systems).
- Were generally viewed by providers needing to coordinate care as failing to meet their potential for supporting care coordination, in ways to be summarised in the recommendations below.
– Limited patient access to, and provision of, patient health and social care data,
– Limited use of data for management of integrated care,
- The key to cost control is, a) a tiered coordinating care system, giving different levels of care intensity for different patients, b) selecting patients for each level, based on accurate data. This allows fact-based targeting. But current information systems do not provide managers planning coordinated care with information on which to base proposals or plans for such services, or manage coordinated care schemes operationally. For example, it is difficult to predict patients at high risk of deterioration and get timely data on frequent ER use or admission by certain patients, and data to allow analysis of whether these could have been avoided.
– Development and Implementation,
- Although all cases were of IC for specific patient groups, two were more system-wide (Sweden, The Netherlands) and two were hospital based outreach IC schemes (Spain, Germany). Hence there were lessons from this study about DHT to support a localized scheme and DHT for supporting data exchange between a wide set of different providers.
- The DHT support system which was the most well-designed and fastest to be implemented and further developed had been created independently of the local hospital and IT system services by a research foundation through the following stages: a research grant from the EU, including an allowance for DHT development; formation of research-foundation-controlled organisation to sell services for coordination, including local coordination support so as to fund further development; formation of fully-independent commercial organisation to sell services and fund development. This was possible because this coordinated care model could be developed, operated and funded in some respects independently of the wider care system. The other three coordination schemes were more dependent and integrated into their local care systems, and much more dependent on their local care system’s funding, priorities and information technology departments.
From this research we derived recommendations to guide building and improving DHT for CC&IC in 10 sections:
1. Raise awareness of benefits
2. Ensure patients are at the center, with a choice of role
3. Financing – pursue faster reform
4. Reach agreement about technical standards
5. Privacy – update laws and procedures to get the right balance
6. Develop political processes to prevent innovation being blocked
7. Involve all stakeholders in strategy development
8. Implement through regular course correction
9. Fund and develop research for practical knowledge
10. Build communities of practice for implementing and generating relevant research