Experiment Outcome Indicators

The objective of the project is the realization of a proof of concept for the public disclosure and use of real-world outcome data relevant to patients for shared decision making (SDM). It should show the value of transparency in health care outcomes and identify best practices on the best way of using outcomes for SDM. Four concrete aims have been set: 1. Use available real-world outcome data to extract new and valuable insights in patient-relevant treatment outcomes; 2. Inform patients about outcomes they can expect for different treatment options and at different care providers; 3. Enable and support patients to co-produce their own treatment; 4. Gain insight in the degree to which better patient information and SDM leads to different treatment choices and/or increased patient satisfaction Santeon is a Dutch group of hospitals encompassing seven teaching (STZ) hospitals that collaborate in an open partnership with the objective of improving medical care by means of continuous learning and improving. Santeon is a frontrunner when it comes to adopting the value-based healthcare (VBHC) framework. Santeon measures and compares outcomes, costs and turnaround times per medical condition in a structural, standardized manner, and uses that data to rapidly learn from one another and collectively enhance the value of health care provision. We will use an iterative and participatory approach. Essential is the involvement of key stakeholders (patients and health care professionals (HCPs)), the use of continuous evaluation cycles and intertwinement between development, implementation and evaluation. The project comprises five domains of outcome transparency, corresponding with the four project aims (Domain II-V), and focusing on three patient groups: patients with breast cancer (oncological/elective condition), stroke (cardiovascular/(sub)acute condition) and chronic renal failure (chronic condition). The foundation is formed by the existing Santeon VBHC program called Domain I, which covers the internal transparency of outcomes: comparison and application of outcome data for the improvement of daily care and treatments. In Domain II scientific research is performed on the use of real-world outcome data to get new, more precise or more personalized insights in treatment outcomes and differences between treatment options focusing on the three medical conditions. Besides, we will investigate how we can use real-world outcome data and how we can embed patient-reported outcome measures (PROMs) to support successful SDM. The Santeon datasets consisting of real-world data are well positioned to answer these research questions due to the size and focus on patient relevant outcomes. Within Domain II, a retrospective study design will be used for each medical condition. The focus of Domain III is the development and implementation of an effective approach for using outcome data in SDM. The model that will be used for the implementation of SDM is based on the “Three Talk model” of Elwyn et al. consisting of the steps: 1) “Team talk”, 2) “Option talk” and 3) “Decision talk”. The focus will be on developing an approach/tool for each of the patient groups that supports these steps with personalized outcome data. PROMs are seen as an important ingredient for successful SDM. The aim is to directly implement and use PROMs within the SDM process by 1) informing patients on PROM results at a group level based on the available data. And 2) using the PROM results on an individual level to obtain insight in what is relevant for the patient. First the focus will be on implementing SDM, using existing outcome data of Santeon to better inform patients on treatment outcomes. In parallel, we will work on an approach to use PROMs data to support SDM, to be implemented in the second year within the Three Talk model. Within Domain IV the hospital-specific outcomes are used to inform patients on quality differences between hospitals and to ensure that patients are better informed on quality of care and risks related to the treatment(s) and differences in outcomes between treatment options. In Domain V we study the added value of public disclosure and use of outcome data on informing patients visiting a Santeon hospital (Domain IV), for SDM in clinical practice (Domain III), and for outcomes-based research for health care improvement (Domain II) in terms of patient and doctor experiences, different, and better-informed choices, changes in health care utilization and in outcomes. The evaluation of the program uses mixed methods in an Action Research before-after design. We will set up a rigorous program organization with central program management and research capacity by medical condition and local implementation power in the individual hospitals. This combination is crucial to reach the ambitious goals as described above. By means of a well-structured communication and implementation plan we share the insights gathered with HCPs, patients and other parties.