Ordering Heart Transplantation Miria Grisot Dept. of Informatics University of Oslo

TTeC2006 Complexities Complexity theme Information System research Problem solving approach STS approach Accepting complexity Information Infrastructure perspective Use of IS in hospitals/healthcare systems Cross-disciplinary use of systems Patient process Support to coordination and information flow

TTeC2006 Heart transplantation Slippery, elusive object balancing between: healthy enough/sick enough matching recipient and donor two trajectories: recipient and donor chronic status: lifelong relation with the hospital/ implication for “amount” of information different disciplines, different locations

TTeC2006 The process Complex trajectory successfully coordinated No Transpl Unit Various disciplines: Cardiology, Thoracic Surgery, Immunology Specilaised nurses: transplant coordinators Lab technicians (service departments) Sharing of management duties and responsabilities What are the complexity involved in terms of information production and use and how to ”picture” them? How do they achieve unity without central control?

TTeC2006 Patient Trajectory Referral Transplant Surgery Waiting Period Post-operative recovery Evaluation Period Follow up Acceptance to NHMatch for Tx Acceptance to WL -District Hospital -Cardiology -Tx Coord. -Specialized Examination -Periodical Controls -Toracic Surgery -Harvesting Team -Tx Coord. Data Production -ICU -Cardiology WL -Cardiology

TTeC2006 Tx Coordinators Cardiology Department Patients, candidates, recipients, heart transplanted Logistic and planning Controls and exams Support before/after Information about the process and consequences Nurses documentation (paper and electronic)

TTeC2006 Cardiologists Cardiology Department Regular visits and controls before/after Other options, irreversibility Heart meeting Service departments Healthy enough, sick enough Medications and side effects

TTeC2006 Transplant Surgeons Thoracic Surgery Department Heart meeting Matching recipient/donor Waiting list ABO, Body size/PVR, urgency, waiting time, CMV match, HLM match Transplant surgery (5 hours) Monitoring early rejections and infections (ICU) (3-7 days)

TTeC2006 Tx Coordinators Thoracic Surgery Department Donor hospital Scandiatransplant (11 tr. hospitals) database International Society for Heart and Lung Transplantation (ISHLT) registry Nordic Thoracic Transplant Study Group Monitoring the patient-donor condition Collecting donor information Harvesting team (8-12 hours) Travelling of recipients (4-5 hours)

TTeC2006 Immunologist and Lab technicians Institute for Immunology Analysis of blood and serum Microbiology Blood bank Pathology HLA typing and screen for antibodies Immunosuppressive treatment Managing the waiting list Scandiatransplant database HLA lab/Nyrebase

TTeC2006 Hybrid Infrastructure in use transplant coordinator nurses in cardiology transplant coordinator nurses in surgery Surgeons Cardiologists immunologists patient coordinators lab technicians Bioengineers Pharmacologists Pathologists Microbiologists … EPR/Portal Pims (adm) RIS EROS (lab) Nyrebase/HLA Lab Scandiatransplant Paper based patient record (centralised) Local patient record at IMMI (recipient) Local patient record at ThS TCoo (donor)...

TTeC2006 Cardiology department Bed occupancy list Admission Form Plan for Blood analysis and tests Modification on Waiting List Institute for Immunology Waiting List Thoracic surgery department Evaluation for Transplantation/HLA tests ISHLT Recipient form ISHLT Recipient follow up form Heart waiting list member-form Patient Record request Archive Dep. Room Booking Patient Hotel Heart Labs Request for Angiography and other examinations Institute for Microbiology Serology analysis of necrodonor Microbiology report Clinical Chemistry Dep Analysis Request Planning of evaluation Intensive Care Form Donor hospital Organ DonationDeath Certificate Donation Working form Scandiatransplant Necro form Transport form Donation and Transpl. form HeartCatetrization Results Test Results Echocardiography report Biopsy report Information ChecklistHTx patient PlanF1 form

TTeC2006 Ordering heart transplantation Care Patient centered focus Patient Identity Action in the short term Research Focus on Organ/heart matching Long term shaping of the process Accounting Focus on Professionals Financial and legal aspects Allocation and distribution (resources, time) Differences and co-existance Tight integration Loose integration

TTeC2006 Conclusions How to accept complexity? From ”supporting coordination” to ”enacting coordination” Incoherences and fragmentations can work Information Infrastructures: Modes of ordering Connections and disconnections