Digital support options for new forms of care using the example of specialized outpatient palliative care (SAPV)

The importance of holistic, cross-sector care concepts and the associated requirements for the daily work of medical and nursing service providers are in a continuous process of change. New forms of care, intersectoral cooperation and process optimization measures are a central component and at the same time the basis of modern patient care. A transfer of information and knowledge related to these circumstances thus becomes a critical factor for the final quality of the service provision and its maximum possible care efficiency [1]. Building on this, new, complex requirements for technical work tools and communication media are developing, which meaningfully complement existing supply structures or even take on a central cross-sectional function [2, 3]. The influence of electronic procedures increases exponentially as soon as sectoral boundaries are broken particularly frequently in a still fragmented care system, large spatial distances have to be overcome or intersectoral cooperation becomes particularly important in terms of treatment success [3, 4]. All of these factors are of central importance, especially for the design of new and information-intensive forms of care within the meaning of the Fifth Social Security Code (Table 1) [5]. Information and communication technology (ICT) solutions must demonstrate the potential here to better meet the current and future challenges in the healthcare system [6, 7] [8] and at the same time sustainably increase quality and cost-effectiveness [1, 3, 9]

>> To test this assessment, specialized outpatient palliative care (SAPV) is a predestined object of investigation. In this complex but technically clearly defined indication area, patients with a poor prognosis are cared for in their usual home environment by service providers from different sectors in the sense of a care network in the terminal phase of life. The cooperative and communication-intensive interaction of all care actors (Fig. 1) is a treatment-related necessity and is therefore of crucial importance for the success of care [10]. Only in this way can the individual and dynamic patient needs be taken into account, taking into account the legal requirements for the right to SAPV [11]. Care deficits often arise due to wastage within intersectoral cooperation and communication, which leads to under-, over- or incorrect care at the point where the service is provided and significantly increases the risk of an ineffective or inefficient treatment process [12].
As part of the accompanying research of a pilot project to introduce digital palliative documentation, it was examined what concrete contribution ICT can make to those involved in the complex care situation of SAPV (Fig. 2).
The research project relates to the following two topic areas:
• Identification of inhibiting and promoting factors through the use of ICT within the framework of medical, nursing and administrative service processes
• Possibilities of avoiding care uncertainties by using a cross-sector, electronic patient file
methodology
The still young domain of ICT support for new or innovative forms of care has so far received little research. The methodological objective was to provide the database for a generalizable statement about the object of study, which also goes beyond the singular case of support potential within the SAPV pilot project [13]. For this purpose, the current state of research in the relevant specialist literature was initially examined as part of a literature search. In addition, between 2009 and 2012, a comparison was carried out using the search function of the terms “ICT”, “e-Health”, “health care”, “palliative care” as well as “innovations” and similar terms used in the scientific medline.
Pubmed database and the SpringerMedizin archive collection. Results and current research status were verified and supplemented in lectures at various congresses and workshops such as the Capital Congress (2012), Demography Congress (2012), SeNova (2012) and BMC Congress (2013). Building on this, process analyzes and requirements surveys were first used to fundamentally work out which supply processes, communication channels, documentation processes, dependencies and optimization potential could arise from an operational project perspective. This was done in direct coordination with the pilot project partner and palliative care team Lahn-Dill (PCT Lahn-Dill). The information obtained provided the basis for the software development of an initial prototype of the ICT application, which was repeatedly adapted to the needs and requirements of the end users in an iterative service engineering process over the course of the project [14]. The results were scientifically verified after the software was completed both before and after the system went live at an interval of eight months and using participatory, semi-standardized observational analysis [15]. This was identified as the most suitable instrument of qualitative empirical social research in the research context. This meant that the status quo of the supply situation in the specific project could be verified and the requirements for the ICT solution made in the context of the process analysis could be evaluated. As part of the two five-day participatory observation, data from a total of 18 patient cases were collected during regular care operations (medical, nursing, administrative) once before and once after the introduction of electronic palliative documentation. Furthermore, to obtain an overall overview, the work of the case manager was observed twice and the weekly case discussion once. Based on theoretical preliminary considerations and for the purpose of methodological preparation, an observation plan was created and a category system was deductively developed [13]. Using an inductive approach [13], the category system was dynamically expanded and supplemented in terms of content, particularly during the course of the project to introduce electronic palliative documentation, in order to be able to meet the quality criteria of qualitative data collection such as objectivity, reliability and validity [13]. The observation results were recorded in the form of reductive description, as the entire object of observation was initially aggregated and reduced with regard to possible ICT influence potential [15]. Finally, the observation results were assigned to the category system after appropriate text and source criticism, summarized in a short case description and coded [13] (see Table 2 for cumulative presentation).
On the basis of the operationalized individual cases before and after the use of electronic palliative documentation, the intersubjective comparative analysis [13] was carried out, the results of which are presented below.
Results
The accompanying research was carried out as part of an industrial project by T-Systems International GmbH in cooperation with the company Portavita BV, a Dutch healthcare IT provider. The project was implemented in collaboration with Lahn-Dill-Kliniken GmbH and the associated and certified PCT Lahn-Dill. In accordance with the certified care concept, the team consists of predominantly permanent and additional co-opted members from the professional groups of palliative medicine, palliative care, administration and case management, psychosocial professions (psychology and psycho-oncology, pastoral care, social work), palliative counseling and other therapeutic professions. Together with the contractually bound cooperation partners (established doctors, nursing services specializing in palliative care, outpatient hospice services, a hospice and a palliative care ward), the 24-hour SAPV is covered for the entire Lahn-Dill district with around 260,000 inhabitants [19]. The place where the service is provided is either the patient's home environment or an inpatient facility. Depending on the existing structure, the existing care offering is supplemented as a pure consulting service or additional partial care, or complete patient care is taken over. After the patient has been examined and enrolled in the SAPV selective contract, elective home visits from each service provider take place approximately once a week.

The care processes before the introduction of a digital patient file:
At the beginning of the observation cycle, around 30 patients were being treated at the same time. The daily routes were planned either by the case manager or individually and kept in the form of a daily list with the most important administrative data. This creates trust, especially for service providers who are not involved full-time in the SAPV, and provides a rough orientation. The mandatory triage and anamnesis on site was carried out using a paper file located at the patient's bedside, which, depending on the patient's home situation, was in a cleanly managed or unstructured state. Inhibiting influences such as incoming telephone calls, missing, incorrect, in need of interpretation or illegible documentation within the paper file were found in every observation cycle. This primarily concerned administrative data such as contact persons, prescription period or insurance relationship, the comprehensibility of the medication list, which has to be updated again and again, or the contact forms. To bridge uncertainties in care, relatives were interviewed on site or the case manager was contacted by telephone. The documentation was occasionally carried out continuously during the stay, but mainly at the end of the visit. No communication barriers could be identified. In addition to the individual documentation, a carbon copy remained in the patient file, and another was sent to the case manager for the purpose of an overall overview. Depending on the complexity of care, the length of stay with the patient varied widely between 20 and 90 minutes per visit, with information gathering and documentation time on site accounting for up to 15 minutes of this. On a day of care, between three and five patient visits were conducted by each accompanied provider.

The care situation after the introduction of the digital patient file:
The switch to digital patient files took place in two steps. In the first step, both digital and paper-based documentation was temporarily possible; in the second step, newly enrolled patients were recorded exclusively electronically. Before the project started, all service providers had the opportunity to familiarize themselves with the digital documentation as part of a 14-day training course. Since the introduction of the digital palliative files, around 50 patients have been cared for in the system at the same time, with around one or two new registrations per day. At the beginning of each care day, the work list in the electronic patient file was checked and, based on this, the route planning for the upcoming day was carried out in coordination with the case manager. Necessary advance telephone calls with patients and relatives or subsequent documentation from the previous day were recorded on the PC. Tablet computers were used for mobile use. Depending on the patient's psychosocial situation or the amount of documentation required, data was collected after each home visit in the car, in three cases with the help of a tablet computer directly at the patient's bedside, and in two cases using paper-based notes as a bridging aid. Adjustments to the medication plan or important descriptions of the condition were always documented digitally at very short notice and were therefore promptly available to all service providers in the system. Care-related ambiguities based on the digital patient file could not be observed at any time. Questions to relatives regarding the treatment history arose occasionally, but did not relate to the documented content of the patient file.
Conflicting or difficult-to-interpret information could not be observed while using the digital file. At the same time, the necessary gain in knowledge, especially in crisis situations, could usually be achieved by directly looking at the digital patient file without any loss of time that would hinder the process. The same also applied to retrieving administrative data such as the prescription period or responsible contact person. The journeys between patients, especially in the medical field, were interrupted by a large number of incoming calls and were induced by medication and treatment decisions or general professional exchanges. The length of stay per patient varied widely between 15 and 120 minutes, with the documentation time and information gathering on site being a maximum of five minutes. During the observation, documentation was only carried out after the patient had visited and left the patient's environment. Up to five patients were visited per care day and service provider. Mobile network availability only significantly influenced the possible uses and documentation times of the digital file in one case. The documentation was carried out at a different time on the way to the next patient. Difficulties in using the keyboard on the tablet computer or the digital file occurred sporadically.
discussion of the results
ICT instruments will continue to play an increasingly important role in improving the quality of new forms of care. They create transparency in the care process, enable largely barrier-free and space- and time-independent access to data relevant to treatment and thus offer a central cross-sectional function, especially for the implementation of intersectoral cooperative care structures [2, 3]. The facilitation of pragmatic, semantic and syntactic comprehensibility [12] within the documentation described in the literature was confirmed during the course of the observation in that no uncertainties in care due to unclear documentation could be observed using the electronic file at any time. At the same time, both the risk of errors in communication and the response and preparation time of the service providers were improved, as background information documented on file no longer had to be obtained from relatives or care partners, thus making the anamnestic discussion easier. This was particularly noticeable in the case of initially unknown and newly registered patients on the general practitioner's on-call basis, as the prevalence of palliative emergencies was relatively low and the uncertainty of care before the patient's visit was high. An improvement in supply transparency could also be observed. The use of the digital file creates immediate clarity about the care needs and the knowledge of the patient history conveys a higher degree of continuity and professionalism in the treatment process to patients and relatives. The time saving factor was also important during the observation. In a direct comparison, information gathering and documentation alone required an additional effort of up to ten minutes per on-site patient visit at the expense of paper-based recording. The event-dependent documentation and review of documents could now be carried out in a flexible manner because it was decoupled from the paper files at the patient's bedside. Although no overall reduction in documentation time could be determined during the observation, there was more time for the patient's concerns with increased care efficiency on site. The system availability was also positive. Although the mobile data network in rural areas was not always fully available with HSDPA, UMTS or GPRS, in only one case did this actually mean a restriction in the timely implementation of necessary documentation steps.
In addition to these numerous observed advantages, limitations in digital use were also identified. Points of criticism and barriers to diffusion of technology-supported applications [16] in the literature often refer to the possible creation of communication barriers, the development of concentration or attention deficits or a lack of technical trust [17]. During the observation period, parallel or supporting processes continued to exist whenever direct personal feedback from an actor was necessary. This particularly included emergency communication or medication orders, which were often initiated by telephone via case management. This proves that not all information could be recorded digitally and that processes existed that cannot be adequately supported despite an electronic patient file. The overall benefit of process-supporting technologies therefore depends crucially on the interaction of the technical quality of the supply network, the existing organizational framework and the functional or qualitative requirements of the system [18].
The IT affinity and willingness to use the system also varied greatly during the observation period. Although training cycles, familiarization periods and the provision of tablet computers achieved a high level of acceptance, individual functions provided by the system (e.g. pausing created documents) remained unused. In addition, there were also areas of action in which direct ICT-supported documentation did not appear to make sense from the service provider's perspective due to the psychosocial situation of the patients or relatives. Patient acceptance of technical aids is considered difficult, especially in the case of initial assessment and patient information. Although the direct use of tablets at the patient's bedside did not lead to any negative reaction from patients during the study period, this assessment could not be fully verified during observation. With particular attention to the patient's illness situation, it is therefore the important task of the treating person never to let ICT stand between themselves and their patient.
In summary, the positive result of the use of ICT in a palliative pilot project with particularly favorable conditions and requirements (see introduction) does not allow for a conclusive, unrestricted generalization. However, important prerequisites can be derived for the successful use of digital technologies, especially in intersectorally oriented forms of care with larger indication areas and higher prevalence. The benefit and acceptance of ICT can only be achieved if its use creates direct added value for the daily work of all those involved. The necessary foundation for this must be laid in existing intersectoral cooperation.

Central message:
• ICT improves process transparency and simplifies semantic, syntactic and factual comprehensibility in the care process.
• The added value of innovative technologies is crucially dependent on sustainable organizational structures within the supply network.
• Space- and time-independent documentation reduces both the reaction and preparation effort and thus increases the patient care time.
• Clarity about care needs and patient history means a higher level of continuity and professionalism in the treatment process and prevents uncertainties in care.
• ICT provokes the creation of communication barriers and must therefore be used carefully with regard to the psychosocial situation of the patient. <<