Establishing integrated care for older people not only involves organising a co-ordinated arrangement of care structures and processes – it also has implications for information management. This is because good communication – about the needs of the older person and about the professional activities that aim to deal with these needs – is essential for working in an integrated way. The flow of various kinds of information between professionals and their organizations, known as ‘information flow’, is pivotal to co-operation.
Some useful principles and tools for documenting and distributing patient information have already been developed in the field of acute and long-term care, but in an integrated care system, which may include not only medical professionals but also, for example, care workers and occupational therapists, there are special requirements for information and information flow. Moreover, an integrated care and services system specifically designed for older people may have further additional requirements and features.
A manager considering how to manage information in the context of integrated care may ask questions such as:
This chapter is intended to offer answers to these and other questions, and to provide some information, insight, considerations and recommendations on issues related to information management in integrated care.
Although the word ‘ICT’ regularly appears in this chapter, most of the statements and principles that are made here apply to non- or semi-ICT based information systems as well. The chapter is primarily about information management and its use and users rather than technology or ICT, but it assumes that ICT will be used.
In current practice, there are many forms of integrated care for older people, many of which are detailed in other chapters of this resource book. In this chapter, when we talk about the integrated care system, we refer to it in a generic sense, in whatever form it takes in practice. So in this chapter, when you read the phrase ‘integrated care system’, think of your own integrated care system, or the one that you are going to develop.
The information management system is probably the most important supportive process to modern care. It has two important constituents:
Together, these two components – the patient record, and the specification of information flows – comprise the ‘care information system’.
It is worth mentioning that ‘information management’ does not include oral communication between a health professional and a patient, nor handing out general disease information to patients. These forms of communication are known as patient information and patient education.
Finally, as this chapter refers mainly to information management in the medical sector, we use the term ‘patient’. However, the same points apply to clients of non-medical care and services.
Throughout this resource book, there are references to the importance of an accessible and accurate information system. Information is important to:
The following sections explain why it is important to each of these groups, and point out types of problems that can be prevented or resolved with good information management.
Professional communication is very important in integrated care. In their work, professionals generate information that has to be registered and documented, either to be used by themselves at a later date or to be exchanged with other professionals and with managers for administrative reasons.
A good information system offers user-friendly methods of registering, retrieving and displaying information. It ensures that the information passed between members of staff is up to date, reliable, timely, and easy to understand.
Good information management should make the integrated care process more efficient and effective. Using an effective information system to store and retrieve administrative information about a patient prevents duplication and saves time. Access to clinical information (to those with permission to access it) may be absolutely necessary for the work of a professional. In other cases it may not be essential, but can widen and deepen the insight into the problems of a patient of client, thus allowing better quality of care.
Using an information management system opens up greater possibilities that can contribute to integrated working – for example, better planning, improve co-ordination, and better co-operation in assessing, treating and routing patients.
Professionals may benefit further from an information management system if there is a link to an internal or external (internet) database of professional knowledge – for example, detailing a supply of providers and other professionals, or disease and care information. Also a decision–support system can be very useful for guiding a professional, or a team of professionals, through a complicated decision-making process in diagnostics and care needs assessment, in order to arrive at the best possible decisions.
A good information management system can benefit organisations in many ways. First, it can encourage care-providing organisations and their managers to take greater interest in providing care that is higher quality and more efficient, and higher rates of client satisfaction. To the extent that an information system can facilitate quality of care for individual patients, the patients themselves will attach importance to a well-functioning system.
Using aggregated information in an information system enables organisations to assess the costs, cost-effectiveness and quality of their integrated care system. This creates the opportunity for administrative, financial, and strategic planning, and for quality improvement and research purposes.
Patients or clients are usually not considered direct users of a care information system. However, they do receive important indirect benefits from efficient information exchange, because of the increased quality of care that it may (and should) produce. In an investigation of the Netherlands Federation of Patients and Clients Associations (NPCF), patients of hospitals and day clinics ranked a good exchange of communication between their doctors as being of paramount importance, above all 30 other items on quality of care (Janse et al 2002).
Patients – just like professionals – complain about having to provide the same information over and over again. A care information system can be specifically set up to prevent this duplication of data.
A further issue is that of putting the client first – a factor that is of great importance within the field of integrated care. A good information management system can help increase client and patient involvement in a number of ways:
Patients benefit from information management systems when a health professional discusses the information in their record with them. This increases transparency between both parties.
Research indicates that involvement of the patient can increase the extent and accuracy of information (Ueckert et al 2003).
Finally, although not strictly part of a care information system, it is possible to provide patients and their carers with information about their condition by providing online content through a website linked to the care information system. This is certainly possible when the care information system is ICT based, as Doupi and van der Lei (2003) found in the case of burn care.
The rights and voice of individual patients are strongly advocated by older people’s organisations and patient groups, and general patients’ associations such as the Dutch NPCF. All this means that information systems can contribute to the empowerment of, and a clear role for, the patient and (especially in the case of frail older people) their informal carers.
An information management system must support fast, accurate access to information. In integrated care, this means it should facilitate the exchange of information between health professionals and those from other disciplines, working in different settings and organisations. Information that is generated by one professional in the integrated care system has to be made accessible to the others.
The traditional paper-based information can barely do this – in fact it can hardly even be called a ‘system’. The information may be complete and centrally stored, but it is hard to update and move through the care system. Alternatively, different items of information may be stored with different organisations or professionals, which makes it easy to update the information but difficult to produce a complete set of patient information. In either scenario, the exchange of information is slow.
The literature on computer-based patient records cites many advantages of ICT systems. Compared to paper systems, ICT is more reliable, accurate, accessible, modifiable and manageable, and can be more easily protected. Concerns about privacy and non-disclosure are often expressed, but in fact a paper file is at least equally vulnerable to violation of privacy. If information has been generated by means of computers, by keying it in directly, it is impractical to convert that information into a printed hard copy and apply that for circulation and use of information and leave the stored digital information unused.
Finally, and most importantly, ICT offers a number of new possibilities that are particularly important for integrated care. These include:
The obvious disadvantage to ICT is that it requires invstment in hardware, and possibly dedicated software, training, management and maintenance – which is costly. However, the advantages outweigh the disadvantages – for example, when a patient moves to a different type of treatment or a different area of the health or social care system, there is no longer the need to initiate a completely new file, or to issue a special transfer file as the patient is discharged from one stage to the next.
One might wonder whether an integrated care system that does not use ICT is really ‘integrated’ at all. Integrated care systems are modern organisational arrangements in care, with very specific features. Unless the cost is prohibitive, it is appropriate to use modern information management principles and technology that support these features. Advances in information management and technology are such that, even nowadays, initiating an entirely paper-based information system in care – let alone one that is based on oral information – is of limited use.
In many European countries, national experiments and developments in information management in integrated care are taking place. In the UK, the NHS Information Authority’s Electronic Record Development and Implementation Programme (ERDIP) has seen health communities across England carry out detailed work piloting different aspects of the development and use of electronic health records and information management. Some of the projects have direct bearing on integrated care for older people, such as those on developing information management in integrated pathways, integrated care record services, and electronic links sharing information between health and social care professionals.
Source: NHS Information Authority (2003). See also Practice example: Satakunta Macro Pilot project.
For integrated care systems, three feasible approaches of distributing information exist in practice:
The centralised approaches are easier than ever to set up and run, thanks to recent developments in ICT. Keeping or creating a central information record of a patient is an attractive thought and makes practical sense. By centralising the patient’s record, the information becomes separate from the individual organisations in the care chain, making it easily accessible to those inside and outside of the chain, where this is required. As such, it allows a much more direct form of control or management of an individual case by, for example, the patient him or herself or the case manager. Updating the information in a centralised system may also be simpler than in a decentralised system.
However, there are many potential drawbacks to the centralised approach. Centralising information requires each care provider to use a common language and uniform information format so that they can access the information and amend the files. The need for this uniformity means there needs to be an agreed and accepted standard on the technical aspects of the system. In addition, care providers have to invest in technology and training so that personnel can actually use the system.
Overall, the mixed approach seems particularly attractive. This approach is currently being applied in a number of experimental projects in the health care field, such as the Satakunta Macro Pilot project below.
In Finland, the development of integrated care is strongly dependent on the development of ICT tools supporting this type of care. The government took a leading role in stimulating the integration of care and services and in developing supporting ICT applications. One major experimental environment was the Satakunta Macro Pilot project in western Finland.
Macro Pilot was an extensive project involving the development of seamless care and service chains with the optimal use of ICT. In the city of Pori (pop. 76,000), the project carried out a specific sub-project on the care of older people. The information system components of the project were:
The sub-project demonstrated the importance of ICT-based information, and hence of information exchange. The new operational care arrangements and the ICT aspects of the project were both successful. Further sub-projects developed new integrated service chains for specific sub-groups among older people, such as diabetes, dementia, COPD and rehabilitation. From 2004, the results will be implemented nationwide.
Source: Hänninen (2003)
In Blekinge, Sweden, a dedicated ICT-based information system model has replaced a routine of sending faxes to various components of the regional care and social services system before a patient is discharged from hospital. The care system relates to the co-operation between a regional hospital, local primary care teams and social services departments.
Source: www.ehma.org
The Resident Assessment Instrument (RAI) is a system used worldwide, primarily for assessment and care planning (see Web links). It has patient record documentation features that make it well suited to a health information system in integrated care (whether for home care, residential home, nursing home, mental health care or hospital). ICT-based applications have already been used for funding, quality improvement, benchmarking and care assignment. The RAI is considered to be a good generic health information system because it promotes the use of common language and because it stresses the importance of a functional approach.
Source: Frijters et al (2001)
It is too simple to say that all the information available to members of the integrated care system must be available to all the other members. Nor is it true that every member of the system needs to have access to all the available information about a patient. This would be impractical and cause information overload – and it may be forbidden by law or regulations.
It is important to specify carefully what information is required, and by whom. An information requirement assessment will state what information the patient record should contain, when data may be added, changed or used, and by whom, and how it should be handled in information flows. The assessment is made up of four main steps:
Study the patient flowchart of your integrated care system. This will contain information about health and social care professionals in the care network, group meetings and case managers, and should illustrate the process of your integrated care system. The flowchart can be seen as a network. Each node, or spot where two more lines intersect, specifies (potential) communication and co-operation. List the (potential) connections between the network nodes in the flowchart – in other words, list all possible relationships and processes between individual workers, or groups of workers, that co-operate in the integrated care system. The nodes are the potential producers and users of information, the connections limit the kind of information that they receive and send out.
List all occurrences, or potential occurrences, of communication between care professionals. Then, list all the types of communication and message connected to processes in the network. These may include requests for actions or progress reports, and the results of these requested – and other, unrequested – actions.
One key report that will be important to all nodes is that of initial intake and assessment. Another is the end-of-care report (at discharge or death).
Each ‘message’ implies a modification or amendment to the patient record. In this way, all actions of professionals will be registered in the patient record, no action of a professional and between two professionals goes unnoticed to the care system. The message should also include ‘meta-information’ – information about the message itself, like details of sender and recipients, the time and, if necessary, instantaneous notification of the amendment, to the person who requested it. The standard email format (with a sender, recipient, time, subject, message, and so on) might be a simple but suitable conceptual model for the message.
Modifications of the patient record are considered indications of a change in the status of the patient, which will have to be evaluated in the integrated care system process.
The third stage is to add to this analysis the information needs of other users potentially connected to the integrated care system. This includes those who are not directly involved in the care process but need information for financial or management purposes. Identify these types of users, assess their information needs, decide to what extent these may be met by the information in the patient record, and agree about how they can use it.
Check the resulting model of information requirements once more with all staff in the integrated care system. The resulting information will provide the specifications for your care information system.
The principles of information requirement assessment are generally simple. However, in a complicated integrated care system, it may be problematic to assess the business processes of the network, and hence, to identify the detailed information requirements linked to the process. In cases like this, it is wise to resort to experts and expert methods, such as the ‘dynamic essential modelling of organisations’ (DEMO) method. DEMO is a procedure that enables managers to perceive the organisation as a system of communicating actors who create information (see DEMO in Web links). From this, the managers can specify the most suitable information management infrastructure.
Managers are responsible for specifying user requirements, but they will probably leave technical matters to health information managers and ICT experts, who have the skills to translate user requirements into a care information system model or an ICT system.
A manager will need to perform an investment analysis and calculate or estimate the cost of implementing an information management system. A cost-effectiveness analysis or a return-on-investment analysis can help reinforce the organisation’s commitment to implement the new system.
Even if the development stage has been very effective, implementation can fail if there is a poor connection between development and implementation stages – particularly in terms of the people involved. It may not be possible to ensure that all those who are involved in implementing the information flow model are also involved in the development stage. It is vital to inform, motivate and train them from very early on.
A test run should be carried out before the system is fully implemented, with demonstrations of how the system should work. The demo should run as smoothly as possible, as any failure will have an impact on people’s confidence in and commitment to the system.
The new system should be phased in one department at a time. Each department has its own implementation team, which gives the feeling of ownership, encouraging the commitment of all staff.
At this stage, various participants may start to feel that using the care information system will place unexpected burdens on them. For a hospital, working with a care information system may be routine, but for a self-employed GP or nurse working alone, the new system may appear to be an additional burden. In the long term, the information management system should make things easier for everyone involved, but an adjustment period must be factored in to prove its merits.
At this stage, the care information system is further developed into a set of routine-based procedures that are resistant to negative influences, such as lack of co-operation, and that are open to further improvement and extension. This is done through ongoing evaluation and systematic quality improvement. This involves setting a number of explicit evaluation criteria, such as:
Creating a distinction between several categories of staff can ensure a better attitude towards the care information system and hence also towards their competencies and roles. These categories may include:
Whether or not the manager has a background in information management or health information, ultimately what is required is the skill to manage across disciplines.
Responsibilities and tasks should be clear for all staff. This is particularly true for staff who are responsible for feeding data into the system, and staff who are permitted to access certain types of data in the system.
For other staff involved, the first competency required is awareness of working in an integrated care system network, and an awareness of interdependencies. Everyone involved needs to contribute to an optimal information exchange, ideally through support and training.
The manager should support staff using the care information system by providing them with:
Training of all staff, including the case manager, is required to enable them to become motivated and gain the skills for information flow within an integrated care system. Staff who are accustomed to using standard computer applications may not necessarily be experienced in using dedicated systems. The case manager needs to be trained in using the system too. Training should be offered in all or some of the following:
The topic of ‘evaluation’ has a dual meaning in the context of care information systems. First, a care information system is a very useful tool in monitoring and evaluating the integrated care system because it offers the possibility to analyse aggregated data on processes, outputs, outcomes and finance. Second, the care information system has to be evaluated itself, in the context of the integrated care system.
The first step is to decide on the methods and frequency of the evaluation. There are no definitive answers, as these depend on the specific integrated care system. In general terms, the evaluation should include features of the care information system with regard to clients, professionals and the organisations involved. Evaluation criteria can be derived from the goals and set up of the specific care information system, but several factors that need to be considered in an evaluation fall into the following four categories:
In terms of processes, the following factors may be included in the evaluation:
The extent to which staff are using (and not using) the information system can be measured by looking at changes in the numbers of users, of patients whose details are in the system, and of reports. It should ascertain whether the benefits that the professionals gain from the system are greater than the investments they put in, so that they continue to use it.
To evaluate the outcome, look at the goals that the care information system was originally designed to achieve. Check whether these have been met, and look at evidence of whether the information system really supports the integrated care system’s process.
Include patients and staff in the evaluation. Check whether the staff who use the system are satisfied or not. While they themselves may have no explicit goals to achieve for the care information management system, they may (or even should) have noticed the change in the way their care is organised.
A care information system may be costly, but if it contributes to reducing the cost of care then it will ultimately be cost-effective. This should be considered in the evaluation. Finally, the evaluation should also verify whether the financial managers’ investment in the system is worthwhile, in terms of the administrative and financial tasks for which it is used.
The barriers to setting up a care information system tend to manifest themselves primarily in the implementation stage of the system, rather than at development or consolidation. Any new integrated care system is likely to meet with some resistance and reluctance from autonomous organisations, but implementing a care information system has some specific problems. Each organisation that co-operates in a given integrated care system will have its own information systems, will use its own documentation, such as forms, and will follow its own procedures. It may be resistant to changing all this and implementing a new care information system.
If the participating organisations are truly involved in the integrated care system, the more technical problems of sharing information can be prevented and overcome through good consultation. Practical problems can be solved by people in the workplace while technological problems can be left to the experts. However, it is important not to underestimate this issue. If an organisation’s co-operation in the integrated care system forms only a marginal part of their total activities – such as a hospital that co-operates in an integrated care system for stroke patients – these organisations may be reluctant to have the rules dictated by other, seemingly minor, participants. It is important to find out who is going to adapt to whom, and how far they will go.
Additional potential barriers to implementing a new information system include:
One final barrier is presented by health professionals who are anti-ICT and anti-information sharing, for a number of reasons. Their objections might include ‘I’m not allowed to make my patient information available to other people’ or ‘ICT is incompatible with human interaction, which is the essence of care’. This can be remedied by demonstrating that they need information from colleagues and from professionals working in other disciplines, and by reinforcing the fact that shared care requires shared information.
To increase the likelihood of a well-functioning care information system being brought about in the first place, an absolute precondition is the co-operation, or the firm and true intention to co-operate, of every potential partner in the integrated care system.
The care information system is dependent on an integrated care system – and indeed, is part of it. So each factor that contributes to the setting up of the integrated care system will also contribute to the care information system itself. However, there are additional factors outside the integrated care system. Developments in health information and automation can – and will – guide the development of care information system for integrated care.
These additional factors include:
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Ueckert F, Goerz M, Ataian M, Tessmann S, Prokosch HU (2003). ‘Empowerment of patients and communication with health care professionals through an electronic health record’. International Journal of Medical Informatics, vol 70:2–3, pp 99–108.
www.demo.nl –website for the dymanic essential modelling of organisations (DEMO) method.
www.ehma.org – the European Health Management Association, which managed the CARMEN network, the group that produced this resource book. CARMEN publications and other materials can be found via the EHMA website or by emailing info@ehma.org.
www.interrai.org – website for interRAI, a collaborative international network of researchers working to improve health care for elderly, frail or disabled people.