Transparency in Healthcare 2017: Working with Consumers and Clinicians to Co-design a Transparent Future

Abstract

Introduction: In New Zealand (NZ), complaints by journalists to the Ombudsman over release of named, surgeon-specific information have led to considerable activity in the healthcare sector. Increased transparency of health data for consumers and clinicians is the future but putting transparency to work has a history of controversy, waste and underuse by consumers. How do we make transparency work for everyone?. Description of practice change: The NZ Health Quality & Safety Commission, a national quality improvement agency, are working with the NZ Ministry of Health on an innovative evidencebased approach to increasing transparency in consultation with consumers. Starting with existing registries, we are developing measures through a co-design process from existing robust data sources that provide consumers with information they want and clinicians with meaningful information they can act on and use for quality improvement projects. Aim and theory of change: Growing evidence internationally suggests the proactive publication of consumer-facing data at the unit, team or organisational level can successfully incentivise quality improvement even in the absence of market-derived mechanisms of consumer choice. Patients in the NZ public health system can't choose their hospital, doctor, or surgeon and the evidence suggests consumers don't use quality information to choose providers even when they can. What levers, then, do we have to increase transparency, reassure our patients and incentivise quality improvement and teamwork in our clinicians, while avoiding the pitfalls of risk aversion, inadequate statistical power and waste of precious resources gathering and publishing data no one uses? We suggest publication of bundles of co-designed measures can inform and reassure consumers and stimulate quality improvement activity in providers via the threat of reputational damage and possibility of gaining kudos. Targeted population and stakeholders, and highlights: Facilitated, expert-led consumer workshops with clinicians in attendance held in 2015 helped us learn what consumers want from increased transparency generally and how they understood the issues clinicians have with public reporting of their data. We found consumers understood issues of low sample sizes and data that was not riskadjusted. Consumers wanted: • Reassurance, trust, confidence in the system • Information from a consumer perspective centred on the patient journey, such as wait times and cancellations • Data on two to three aspects of a procedure • Details of the process • Likelihood of different outcomes including quality of life • Risks and benefits for individuals • Stories with a mix of data and personal accounts • Patient experience surveys and the ability to access 'expert patients' with first-hand experience. Focused workshops held this year with consumers and clinicians of the all New Zealand acute coronary syndrome quality improvement registry (ANZACS-QI) - a well-established clinical registry with robust data - enabled us to co-design and develop a bundle of measures that collectively satisfy consumers as well as stimulate quality improvement by providers, particularly in previously described areas of practice variation or low performance. Conclusions: Success with this registry will enable us to ascertain transferability and sustainability of these techniques over other robust existing data sources.