A joint meeting was convened to feedback the results on these two pathways (presented in chapters 7 and 8). About 20 staff from the two pathways attended, including three social workers. The main issues considered were as follows:
The progress that has been made and the progress that could be made. There was recognition that a lot of progress has been made in the provision of e-health information, especially in relation to the Stroke Pathway. There is a lot of information in a lot of different systems and, mainly through Fusion, some of it can be shared. However, there is a lot more that could be done and there is some frustration that many of these things are taking longer than planned and are difficult to keep moving. There was also a recognition that this may be a continuous process, i.e. rather than achieving the perfect system, the amount and frequency of change might mean we have to continue the quest for the ’holy grail’
There were lots of examples where information is available but it is not accessible or in an appropriate form for use at the operational level. For example, medical information is available but not accessible to
community staff, Fusion does not give access to previous patient information etc that would be useful, the therapists in the Stroke Ward have a system but no hardware from which to access it, Paris has useful information in it but, at best, community staff have to use a separate system to use it etc. One of the consequences of the imperfect access to information is that a lot of repetition is necessary – asking the patient for their details yet again – which, with the problem of having to enter the same data into different systems, means that a lot of time is devoted to paperwork rather than the patient. It was felt that, up to now, systems have either been designed for medical use (some of the data on FUSION) or for management (the Stroke Pathway and iPM).
There was recognition that the amount of information available could build up to a level that made it unusable and the ‘contacts and summary’ system in the community was highlighted as a possible way forward. Similarly more access for more people of things like the medical discharge summary would be helpful.
There was recognition that in Social Work they were some way ahead in working electronically (‘paperlite’) and had made some progress in mobile working in the community and that NHS community staff might be able to learn from their experiences.
There were a mass of improvements and new developments that people wanted to see but the frustration was the time and delays caused by Informatics implementing the changes. There was recognition that Informatics were under great pressure and were spread too thinly across two many projects. In relation to management reports from the Stroke Register, there was frustration at the time it takes to modify reports and make them more useful and a feeling that staff might be taught how to make this kind of change (and, for example, the contents of standard letters) without having to wait for a lengthy informatics change process.
Although there was sympathy for the pressure that Informatics were under, there was also recognition that users did not find it easy to work with informatics staff. They felt that requirements were often misunderstood and that a language gap existed between the two communities. Some of the users present felt that they often agreed to proposals from Informatics because they did not understand them and did not feel able to challenge them.
There were many comments about senior management and senior planning groups etc. There was recognition that with the recent merger some of the organizational boundaries were getting more blurred but there was a strong feeling that senior people dealt in visions and strategies and there was little concern for the operational difficulties that resulted. Similarly, there was a feeling that lots of projects were started without the resources or IT staff to see them through and that
more needed to be done to establish priorities and assign appropriate resources to see them met. It was hoped that the current review of Informatics would help to set priorities that would lead to achievements against those priorities. One group made the point that, whilst we pursue new e-health systems for management purposes we needed to remember this was all in the interests of the patients and we might do well to ask the patients what would be priority for them.
There was some pride in how far they had come despite all that had to be done and that it tended to rely on people who had been around for a long time who always went the extra mile – beyond the formal arrangements. Several people mentioned that without the very active championing of a leading member of the Community Services staff, it is doubtful that the FEP pathway would have made any progress and that it was encouraging many others to put the extra effort in.
4.3.5 ‘Walking Through’ the Stroke Pathway
Members of the research team were invited to join a one-day ‘walk through’ of the stroke pathway to review how it was presently operating and to consider possible ways further integration might be achieved particularly in the light of the recent merger (1st April 2011) of the acute and community trusts which removed an important organisational boundary in the stroke pathway. The meeting was led by a senior member of the unscheduled care planning staff and attended by nursing and therapy staff from the Stroke Ward and nursing staff from the Community Stroke Unit.
The ‘walkthrough’ began with the admission of patients to A&E, considered their movement through the scanning unit to the Stroke Ward and their destination after discharge which in many cases was Community Care and Stroke Rehabilitation. At all stages of the process, the meeting considered the process (particularly looking at changing kpis and the barriers to achieving them), at organizational issues (particularly how to achieve flexible working between nursing and therapy staff currently working in Acute or Community settings) and documentation and e-health support for the process. Although it was generally considered that a great deal of progress had been made in creating an integrated care pathway for Stroke many areas of possible improvement were identified many of which related to documentation and e-health. The members of the meeting had previously received copies of the results of the stroke pathway case study and these were instrumental in framing the debate about e-health developments for stroke.
The discussion of documentation and e-health support both validated the conclusions drawn in the case study, especially about the partially joined-up nature of the e-health support at present and led to a consideration of actions that could be taken to provide a more tailored and comprehensive service to the stroke pathway. The following specific issues were discussed.
The re-entry of data: The need to collect data manually both in the ward and in the community and then to enter it electronically into a number of different systems was recognized as a major problem to overcome. In part this relates to the need for mobile technology, e.g. tablets or laptops, that can be taken to the bedside or to the patient’s home but it is also about not having so many different systems.
The CIMMS System: The Acute Trust OT and Physiotherapists revealed that they used an electronic system called CIMMS to record their patient interventions and it had no interfaces with other systems. As a result they had to re-enter data into FUSION and other systems. It was agreed they would explore the possibility of links between CIMMS and FUSION.
The reason for different systems: The staff commented that they had to enter different information into different systems because they were needed for different purposes and they considered the possibility of one set of detailed information from which extracts could be taken for different purposes. One of the problems was that staff caring for stroke patients were also serving other kinds of patients and issues about their deployment required different kinds of entries than those for stroke patients. In addition stroke patients were often being treated for other conditions.
The TIA: Most of the systems were set to support the main Stroke Pathway but there was a significant number of cases of minor strokes (TIAs) that led to a different pathway. A sub-section of the FUSION Stroke Register now dealt with TIA patients and there was a need to link this more directly to the TIA pathway, e.g. to the regular TIA clinics to which patients may well be referred.
The Reporting Process: The meeting reviewed the various reports that FUSION generated from the Stroke Pathway against the various kpi requirements. It noted that the needs kept changing, that there was currently very little data in respect of the community work with stroke patients and that, if kpis switched to being outcome based rather than process targets, there would be a need to completely revise the structure of the records so that different reports could be generated
The Boundary with Social Services: The Re-ablement initiative made it more imperative that there were shared records between health and social care and many Stroke patients had complex social care needs. There were likely to be new members of staff based at the hospital who would manage the social and health care needs of stroke patients and they would have a special need to be able to access both FUSION and PARIS records
Revisions to FUSION: There was already a number of revisions of FUSION for the Stroke Pathway waiting for informatics to enact and this review suggested many more were necessary. Each change in the
report list, for example, required a system amendment that could take months. The Stroke staff wondered whether there were ways in which they could interrogate the data and generate their own reports partly to help them with immediate management issues, rather than having to rely for every change on the informatics staff.
An e-SAP Process for Stroke: Reviewing the community documentation the meeting looked at the possibility of moving from the current cumbersome paper-based SAP process to e-SAP. One of the problems was that SAP was general purpose rather than specific to Stroke patients. The meeting wondered whether continuing along the current path of local fixes to each issue of integration that came along might be the wrong approach. The staff wondered whether a new start might be better, one based on an electronic SAP which could be started with the first stroke assessment in the hospital and go with the patient as they progressed through the pathway.
5. Discussion
The feedback meetings enabled the research team to present the research findings to a wide cross-section of staff, especially in Walsall, and three factors stood out:
(1) that better integrated care is a priority for everybody,
(2) that, as one person put it ‘it is a no brainer’ that e-health systems will be needed to help achieve better integration and
(3) that the research results showed the progress that had been made but also the many barriers that still existed.
The feedback discussions revealed how the development of e-health systems had continued since the research data were collected (often over a year before) and confirm the evolutionary nature of these developments. They also suggested that, given the cut-backs and mergers, it was getting progressively more difficult to make substantial bottom up progress.
There were striking differences both in the scale of feedback and in the nature of the discussions that occurred in Walsall and Northamptonshire. Where feedback discussions were possible in Northamptonshire the general tenure was that there were many barriers to progress but there was little that local health staff could do about them; in both pathway development and in e-health systems design they felt that all the power lay at a national level so that bottom up initiatives stood very little chance of success against the might of the top down machine. In Walsall by contrast, whilst there was a recognition of the top down drivers, there was a belief that local action, joined up across the LHC, could deliver systems that would help with the
integration of care across local agencies. And, as evidenced by the attendance at the meetings in the action research cycle, there were considerable numbers of people from all agencies willing to engage in a debate to shape future e-health systems for the community