In 2001, the Institute of Medicine outlined healthcare transparency as one of ten principles necessary for the re-design of a healthcare system that emphasises quality.Reference Bailes1 The institute defined this as a system that should make available to patients and families information that enables them to make informed decisions when selecting a health plan, hospital, or clinical practice, or when choosing among alternative treatments. The Institute of Medicine advocated for inclusion of information describing the system’s performance on safety, evidence-based practice, and patient satisfaction.
Nevertheless, whether motivated by fear, political, or financial factors, widespread adoption of transparent reporting has not been widely implemented.Reference Brown, Clarke and Oakley2–Reference Shahian, Edwards and Jacobs5 The reluctance to make transparent outcome data available to patients and families is a paradox in an era when data are so readily acquired and communicated. Indeed, the opportunity to harness outcome data to improve healthcare quality by direct and unambiguous communication with patients has never been greater. The importance of transparent outcomes data collection and communication is especially relevant in the field of congenital heart surgery.
Despite advances in surgical techniques and medical management of children with congenital heart disease, the goal of zero mortality and morbidity remains elusive; however, transparent communication of outcomes and adverse events across centres would permit wide adoption of consistently successful approaches and the opportunity to focus on areas that require improvement across congenital cardiac programmes, as well as locally.
Databases from organisations such as the Society of Thoracic Surgeons, the Paediatric Cardiac Critical Care Consortium (PC4), and the Virtual PICU Systems (VPS) allow individual centres for congenital heart surgery to benchmark their own programmatic outcomes and to learn from centres that have better outcomes.Reference Gaies, Cooper and Tabbutt6 Although this collegial and transparent collaboration remains a relatively new approach to benchmarking and outcome improvement, the issue of public transparency remains contentious.
The transparent reporting of outcomes to the general public is not widespread and only a few programmes across North America make this information available to the general public.7, Reference Cohen and Strickland8 Recently, reporters in the media have called for the universal adoption of public reporting to ensure that patients and families are well informed of the outcomes of high-risk congenital heart surgery. Therefore, we describe the development of a Pediatric Cardiac Intensive Care Unit Quality Dashboard with which we report our congenital heart programme’s metrics of quality to the general public.
Materials and methods
Defining the metrics
Key stakeholders in the congenital heart programme were polled to identify metrics believed to be of importance to both caregivers and patients and families. We sought to identify standards that were nationally defined and accepted, allowing for equivalent benchmarking. Where database outcomes were utilised, we ensured compliance with the individual database reporting regulations. We considered metrics that were both already being collected and those that would require new collection methods.
Family-centred care council consultation
Once the metrics had been identified, we collaborated with our institution’s Family-Centred Care Council. The Family-Centred Care Council works on family-centred care priorities for our institution, including peer support, education and skill development for staff and physicians, decision making in care, and improving family experience and hospital services. We sought to determine the following:
∙ whether the format was easy to read and was understandable
∙ whether the information would be of value to the families
Results
Defining the metrics
From the information collected from stakeholders, it was clear that two groups of metrics emerged: those with nationally accepted definitions that could be benchmarked against and those with local importance (Table 1).
Metrics identified for the Pediatric Cardiac ICU Quality Dashboard.
STAT=STS-EACTS Mortality Category; #=number; STS=Society of Thoracic Surgeons
*Denotes a tool developed specifically as a result of dashboard creation
As indicated, there were metrics that were identified that were not being tracked in an accurate and consistent manner. For these outcomes, specific data collection tools were created (appendix 1) and subsequently were monitored for compliance. The data collected were verified by a secondary source at an arm’s length to ensure agreement with established definitions.
Family-Centred Care Council consultation
Following the consultation with the Family-Centred Care Council, the dashboard was altered to make it easier to understand by the layperson. A legend was included that described the different metrics that contained medical jargon, as well as an explanation of the purpose of the dashboard was included. The dashboard was altered and re-examined by the council, until finally approved.
When asked whether the information provided in the dashboard would be of value, the consultation with the Family-Centred Care Council provided valuable insight. What follows are several excerpts from their comments:
Comment 1.
“Yes, we do think that this info would be interesting for families. Families are given all sorts of probabilities as they go along through the process... it is nice to see the actual outcomes from the Stollery”.
Comment 2.
“… I think that staff often are reminded of the worst case scenarios that they encounter in practice as these situations have the tendency to stick in their memories... transparent statistics such as these are a great reinforcer for what “we” are doing well, and what “we” could do better.
Comment 3.
“I love, love, love this idea and think it will of great interest to families!”
Comment 4.
“Love love love the hand hygiene section!!”
Comment 5.
“I’d love to see this in PICU and NICU as well!”
Not all comments were positive as one family member did comment that the information provided might be overwhelming but still should be displayed in some format.
The quality dashboard
Once all the information had been collected from the Family-Centred Care Council Consultation, a visual representation of the dashboard was created (Fig 1a). In order to provide context, a description (Fig 1b) and associated definitions (Fig 1c) accompanied the dashboard.
(a) The Pediatric Cardiac Intensive Care Unit Quality Dashboard. (b) A description of the background and rationale for the Dashboard. (c) Definition of quality outcomes.
This dashboard is updated on a monthly basis and sent out to key stakeholders in the congenital heart programme, including the Family-Centred Care Council and each referral centre within the Western Canadian Children’s Heart Network. The dashboard is accessible to the general public in various targeted areas within the hospital where it is visible to all staff, parents, and visitors. Upon completion of our website, the dashboard will also be made available on the world wide web. At regular intervals, the cumulative results are compared against national rates, and are also represented on the dashboard via a colour-coded system. When a quality metric is identified as concerning, we conduct a thorough investigation, and if indicated quality improvements projects are initiated.
Discussion
The transparent reporting of both adverse and positive outcomes has been a topic of discussion within the medical community for a long time. There have been advocates for complete transparency in researchReference Anand, Scales, Parshuram and Kavanagh9, Reference Halpern and Salluh10 and informed consentReference Chima11, Reference Grady12 as well as the disclosure of medical errorReference Gallagher, Waterman, Ebers, Fraser and Levinson13–Reference Garbutt, Brownstein, Klein, Waterman, Fraser and Gallagher15 within the medical community; however, patient advocacy groups have stimulated public interest and have fuelled the discussion and joined with those in the medical profession in favour of full disclosure. We suggest that complete transparent reporting of outcomes is critical for the development of quality-improvement programmes and describe our institution’s development of a tool used for public transparency.
The Stollery Children’s Hospital’s Family-Centred Care Council was a willing partner in the development of the dashboard and indeed is instrumental in the acceptance and wider promotion of transparency in reporting outcomes. Families who look after sick children with complex illnesses become educated and knowledgeable about the outcomes of their children in a very short time. In addition, access to social media sites and parent-written blogs make it possible for the enquiring parent to discover relatively easily at least anecdotal outcomes both locally and in other centres. Thus, consolidating multiple metrics that referred to complications of treatment or adverse outcomes into one document rather than being overwhelming for families was, in contrast, well received and acknowledged as a positive effort on our part to improve quality of care in a population of children with complex illnesses and multiple co-morbidities. The transparent and full disclosure of our adverse events may reduce the spread of misinformation through anecdotal reporting via unmonitored information streams in the public domain.
Some may argue that transparency is infinitely more palatable when outcomes are good; however, it is important to note that our dashboard reported results that were both favourable and adverse – for example, 6 months into our dashboard’s existence, our benchmarking revealed a higher-than-desired rate of central line-associated blood stream infections. This red flag was not hidden from public view, but instead was highlighted as a concern. A quality improvement project was initiated that was communicated publicly.
We would suggest that public display of the dashboard has had the unexpected and unintended outcome of improving bedside interest in quality improvement. Since the inception of the reporting, there has been a steady increase in both interest in the information provided and the bedside tracking of outcomes. This in turn has led to a better investigation of adverse outcomes and the introduction of new metrics to better track the outcomes of our patients. We believe that the inclusion of locally specific metrics played a large part in this.
A limitation of our dashboard is that, although it focusses heavily on surgical and ICU outcomes, there is a paucity of quality indicators in other key areas within our programme – namely, ambulatory paediatric cardiology and the inpatient ward are currently under-represented. Although these metrics were certainly discussed, we were not able to achieve consistent reporting, and thus they have not been included at present. In the near future, we hope to address the deficiencies outlined.
We fully support recent calls for public transparency in the reporting of outcomes and describe the process through which we have contributed a method of publicly displaying the outcomes at our centre. Empowering patients and families who entrust their loved ones into our care is a humbling but ultimately rewarding endeavour that builds rather than diminishes trust. Declaring both our successes and failures may expose our vulnerability; however, without that transparent exposition, the ability to improve the care we deliver becomes infinitely harder. We firmly believe that families who give their child to our care deserve the right to be informed of all potential outcomes, and more specifically the local outcomes achieved.
Acknowledgements
The authors acknowledge the Stollery Children’s Hospital’s Paediatric Cardiac Intensive Care Unit nurses and physicians for their support in collecting the data. We also acknowledge the Western Canadian Children’s Heart Network as a key stakeholder.
Financial Support
This research received no specific grant from any funding agency, commercial, or not-for-profit sectors.
Conflicts of Interest
None.
