Importance of Informatics and Database Management in Transplant Coordination

Transcription

1 Acta chir belg, 2008, 108, Importance of Informatics and Database Management in Transplant Coordination D. Van Hees, F. Van Gelder Department of Abdominal Transplant Surgery and Transplant Coordination, University Hospitals Leuven, Belgium. Key words. Database management ; time management ; organ-donor ; transplantation ; quality control. Abstract. Advanced use of informatics within modern health care has become essential. Transplantation and transplant coordination, a high technically advanced and very specific niche within health care, is strongly depending on time management and exclusion of possible pitfalls within an acute organization at both the donor and the recipient sites. Based on the increased donor and transplant activity, we stratified two goals. The first goal was to improve working methods at the donor site. The second goal was to reduce administrative tasks and increase quality follow-up at the recipient side. For the donor process, we designed a Donor Database, that was created for donor registration and quality data reporting. A 24/24 h accessible website was created and was linked with clinical pathways and reports. For the liver transplant process, we built another database system in FileMaker pro, creating a quality follow-up and reporting methods. Based on a retrospective analysis and review of two executive time periods, we saw a clear improvement in the donor reporting method, and the quality of the procedure. Possible mistakes within the acute organization were easily detected based on clinical pathways provided by the website on one hand, and integrated within the database system on the other hand. We succeeded in bringing high-quality informatics to the floor of donor and transplant procedures and follow-up. Retrospective analysis showed a definite improvement, with a positive impact on data reporting, time management and administrative follow-up. Introduction Rapid access to diagnostic reports and clinically relevant information on one hand, and access to the latest scientific evidence-based information on the other hand, assist significantly both physicians and allied health care professionals in the delivery of high quality health care. Information systems used in health care include the staff, structures, processes and manuals as well as automated tools that collect, store, interpret, transform and report practice and management information (1). Computer, information and communication systems are also useful for practice, education, research and administration (2). This situation can be projected on a small but extremely high-technical niche such as organ donation and transplantation. In this highly specialized care there are three aspects that need to be managed to ensure high quality : 1. Correct data and information ; 2. Time management and 3. Administration. Correct data and information The related network of donor reporters requires information that is necessary and accessible to coordinate a donor procedure properly. The information available for a single donor procedure is based on different pathways that determine the quality, such as brain death diagnosis, donor management, social aspects and legal requirements of the procedure. Rapid access to essential information such as laboratory analysis, advanced diagnostics, medical history records, determine the minimum donor information that is necessary and that must be transmitted to the organ allocation organization. The organ allocation system for Belgium, Austria, Croatia, Slovenia, Luxemburg, Germany and The Netherlands is Eurotransplant. Standardized information must be reported to Eurotransplant. For many years, the obtained information was transmitted manually to Eurotransplant by handwritten fax and orally by phone. Eurotransplant received this information and entered the data manually into a computer-based record. There is no doubt that this way of working could be extremely vulnerable to mistakes and misinterpretations. The decentralization aspect of donor and transplant procedures makes it susceptible to mistakes. Aspects such as unreadable handwriting, different languages, different laboratory value units etc. are possible problems that could occur. Quality control is therefore essential to reduce failure and miscommunication to a strict minimum. The donor referral information (identity, ABO blood group, serology,...) as such implies a potential risk for medical mistakes due to erro-

2 Transplant Coordination 23 neous communication and information. The frequency of rewriting and re-reporting manually can only increase the risk of mistakes. The fact that the information is available from different clinical pathways, and part of different hospital systems, leads to a potential risk for medical misinterpretation and loss of information. A 17- year-old girl died at Duke University Medical Center after receiving a heart-lung transplant from an incompatible donor, due to erroneous transmission of information. Recently a HIV positive donor was used in North-Italy due to a miscommunication between the laboratory assistant and the transplant coordinator. These casuistic stories are two examples illustrating the importance of safety control mechanisms in organ donor and transplant procedures. A simple avoidable error turned into a human drama with a lot of press tumult and negative response towards donation and transplantation in general (3). Time management Another important issue in organ transplantation is the factor time management. It is a well-known fact, that the time between organ offer and organ retrieval is an essential parameter for the quality of the organs and the efficiency of the procedure. Correct and adequate time management relieve the pressure on both the relatives and the medical team in charge of the donor. Time also effects the clinical function of transplanted organs because of the cascade of inflammatory and cytokine release processes induced by brain death (4). To collect all the necessary information and offer a potential donor to an organ allocation organization is time-consuming because of the multi-factorial aspect of such procedures. The availability of information on donor criteria, the donor procedure and direct communication sources between donor reporters and the transplant centres, are the three essential criteria that impact the entire time frame between initial contact and procurement. An intervention plan based on those three principles was shown successful in reducing the time, increasing the donor numbers and ensuring high quality of the procedure. Optimization of informatics played a significant role in reducing the duration of the donor procedure (5). During the past decades, written files have been replaced by electronic files and internet information databases are now worldwide accepted as the most performant information resource. A database that is available and easily accessible, reduces significantly the administrative workload. Organ procurement organizations increasingly use the World Wide Web (Internet) (6). It is very convenient to enter information about donor procedures, clinical pathways, protocols etc. on Internet for the health care professionals, that can then easily be accessed during the procedures. Administration The administrative workload related to a donor procedure is also an important issue. The importance of a correct administrative follow-up is mandatory because many different organisations, i.e. Eurotransplant, donor hospital, transplant centres, patients, laboratories etc. are involved. Traceability is also crucial to follow all patients transplanted with an organ of a particular donor. The fact that organs leave a local or regional area and are transplanted elsewhere, highlights the necessity of a system that can follow and trace the information independently of where the donor or transplant procedure initially took place. Different international organisations are using information gathered from local centers to give an international overview of the transplant data. Examples are the European Liver Transplant Registry (ELTR) and Collaborative Transplant Study (CTS). The storage of such data therefore is important to make information accessible at all time. The model for storing donor information must be designed to allow clinicians to access donor information from the transplant recipient s record and to allow donor data to be stored without further action (7). Electronic medical record systems are used for many purposes including patient care, administration, research, quality improvement and reimbursement (2). It has also been proven that the electronic medical record is an enabling technology that allows physician practices to pursue more powerful quality improvement programs than possible with paper-based records (8). During the last decade ( ), the importance of database management and website based information became more significant for our centre as well. The continuous expansion of the donor and transplant activity increased the workload dramatically and made it necessary to implement informatics and data base systems to maintain efficacy and quality control. Goals Our first goal was to optimize the donor process by implementing a Donor Database system on one side and a permanent available website on internet on the other side. The aim was to make electronic information available at all time, improving quality and optimizing of administration and follow-up. Secondly we focused on the pre-, per- and post- liver transplant information process to optimise the liver waiting list management and liver transplant related follow-up. Material and methods Three methods were used in order to reach these goals. The donor process was among other improvements

3 24 D. Van Hees and F. Van Gelder redesigned by the use of a specific Donor Database and by making donor related information available through a password-protected website on internet. The liver transplant-related information for pre-, per- and post-transplant period was structured by means of a specific Liver Transplant Database. Donor database We built a specific database, designed in FileMaker 8.0. This is a relational database, which enables to define relationship between other related databases to make exchange of data possible. All mandatory information, necessary to report a donor to Eurotransplant, was included in the initial design. The structure of this database was 3-dimensional : donor, procurement and transplant-related data were included in one file with the donor number and transplant number, given by Eurotransplant, as the two unique key factors. The design of the Donor Database was based on an existing protocol, that was optimized and redesigned at that moment. All written information was summarised and simplified into one computer-based file. Paper forms related to a donor and transplant procedure were designed in the Donor Database. The procurement information and transplant-related information was added to the file once the transplantation was performed. Different business rules (warning pop-ups) were included in the database. Invoices related to the transplanted organs were also related to this Donor Database and there was close collaboration between the hospital financial department and the transplant coordinator s department to make this design possible. Website We designed a password-protected website as a tool for the donor referral hospital network accessible on the World Wide Web. This website was used to bring procedure-related information in an easily accessible way to referral physicians at all time. Through a passwordprotected webpage that was constructed by the central transplant coordinator staff in conjunction with the transplant surgeons, intensivists, neurologists, anaesthesiologists and the department of communication, the donor referral hospital could have access 24 hours on 24 hours to all relevant information to start-up and manage the donor procedure, i.e. declaring brain death protocol, heart-beating donor protocol, non-heartbeating donor protocol, procedure-related forms,...). Liver Transplant Database A specific database was built in FileMaker 8.0. This database is also a relational database, with a defined relationship to the Donor Database. Data exchange with other databases is possible. The design was based on the pre-, per- and post-transplant period. A pre-transplant file, based on centre- and Eurotransplant-specific information was designed. It contains demographic and medical information about the liver transplant candidate. The transplant information form contains data related to the transplant procedure and donor-related information. A relationship is made between the Donor Database and the Liver Database to automatically retrieve specific donor information. Follow-up in the post-transplant phase is included as well, to give access to data about liver transplant patients at all time. Results Optimization of the donor process The donor procedure was positively influenced by means of the Donor Database and the availability of web-based information. Three aims were reached : 1. Electronically available information of the donor process ; 2. Improving quality and 3. Optimization of administration and data exchange. 1. Electronically available information of the donor process Until September 1999, each donor procedure information was transmitted by phone and fax in our centre. This information was sent by fax to Eurotransplant in written files. All further organ administration was based on written forms. Data follow-up was done by manual search at time of request. From the 1 st of October 1999, the donor procedure information was based on a new structure. The existing process was re-evaluated and optimized through the construction of a computer-based Donor Database framework. The computer-based file became the key source of all further communication and information between the transplant coordinator and all other medical and paramedical staff involved in the entire procedure. Manually written files and input were limited to a strict minimum and communication between the transplant coordinator and other related professionals was based on electronic data transmission / information. The website available on the World Wide Web was used as an instrument during the donor procedure to guide health care professionals during the donor process. A major improvement in donor referral procedure was seen, due to the donor-related practical information available on the website. We observed a significant reduction in the time necessary between obtaining relevant donor data and being able to export them to the Eurotransplant database. 2. Improving quality Improving quality as such, was directly influenced by the first result. All potential donors were registered in

4 Transplant Coordination 25 the donor database and effective donors were reported to Eurotransplant automatically. All further information and administration was based on a one record corresponding principle with the donor reporter, without further manual input. Maximal investment was done to ensure quality and safety improvement. Different business rules (warning pop-ups) were included in the database to prevent mistakes i.e. for identity, ABO, viral serology-results etc. In case of positive viral serology, the business rule will lead to a pop-up window with specific serology related information and warning. This tool gave us an extra final safety check before starting a procedure. Once a record was entered, it was used as a unique record for all further information related to this donor pre-, per- and post-transplant phase. All documents related to this donor file were reproduced from the donor database and manually written input was abandoned. The website also led to quality improvement due to information that is always available via internet. Many practitioners are using the password-protected website to obtain crucial information from protocols to collect mandatory data of the donor, before they call the transplant coordinator. 3. Optimization of administration and data exchange All paper forms related to a donor and transplant procedure were stored in the Donor Database. Invoices related to the transplanted organs were also implemented in this Donor Database and there was close collaboration between the hospital financial department and the transplant coordinator s department. By using of the Donor Database, the administration related to invoices was reduced to a minimum. The data available in the Donor Database were also available for data follow-up. These data were used for retrospective and prospective studies and audits. Prospectively, it was possible to add fields to the database that could be used for future purpose. This flexibility of the system was extremely important to facilitate clinical studies. The Donor Database was also used to extract information used in other constructed related databases in our clinical setting i.e. the Liver Transplant Database. Liver Database Before implementation of the Liver Database, all specific information available for liver transplant patients was stored in medical hospital files. From the 1 st of October 1999, all specific information related to liver transplant patients was stored in the Liver Database. We saw an improvement in the pre-transplant waiting list management. All mandatory information was centralised in this Liver Transplant Database and waiting lists could be designed in a way that makes it easier to retrieve information at the time of a liver offer. Once a patient is transplanted, the donor information is imported automatically from the related Donor Database. Follow-up in posttransplant phase is included as well and gives access to data about liver transplant patients at all time. It is possible to obtain data, to perform studies, audits and statistical analysis and make data exchange possible within other international registries (ELTR, CTS,...). Conclusion The development of an advanced database and 24/24 hours accessible website, resulted in an improvement of both donor and liver recipient management. Especially at the donor site, simplifying protocols and pathways into clear and easy patterns, created a manageable acute process for all parties within the organization of the donor procedure. For the transplant coordinator, it reduced significantly the administrative workload, creating frames for spending quality time with the donor reporter in the most important phase of the process. In addition, an access was created with continuous information resources, which increased the trust and support in this highly workload demanding procedures. Due to standardized data reporting and input, time management was positively influenced. This was important, as less time between initial donor reporting and procurement meant also less time spent on the intensive care unit (ICU), reduced pressure on the donor team and on the donor family. Medical and administrative follow-up and feedback was secured through such a system. The creation of the website made it possible that the donor reporter could get access to crucial information and protocols from every ICU room, almost at bedside. No need for excessive running, phoning and faxing during the procedure. The creation of a database for the liver transplant program improved substantially the patient management. Again quality improvement for data accessibility, data follow-up, data auditing and research, data input in registries and traceability of necessary information, has become more structured and easier. In summary, modern informatics and database management are pivotal to provide modern quality health care. Within the multi-disciplinary approach policy of both the donor and recipient involving many clinicians and allied health care professionals, high quality care can only be provided by accessibility to central patient data resources. Reducing risks and mistakes have become more challenging because of the multi-disciplinary character of health care. Reducing mistakes on one hand and reducing administrative and organizational workload on the other hand, are the main purposes of informatics in transplant-coordination.

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