Make full disclosure a central pillar of the healthcare process
A safe patient is an informed patient. In today’s world, that means having the information we need to make informed healthcare choices. Right now, there are too many barriers to transparent information that place patients at risk.The Center for Patient Protection is a stalwart advocate of greater transparency of medical information in all levels of our healthcare systems.
From the Toronto Star’s interview with Kathleen Finlay, June 2019
I’ve been pushing for greater transparency at all levels of health care for some time — everything from hospital safety ratings and medical error disclosure to a national data bank for disciplinary actions/decisions involving professional misconduct and, importantly, sexual abuse of patients.
I’ve seen a real sea change in recent years in the attitudes of patients and families. They know that being an empowered patient leads to better health care outcomes. Information is empowering. There is a thirst for much more information at all levels of our health care system.
No doubt a sunshine law for physician billings would help open the curtains and lead to a better understanding of costs and benefits for one of the largest outlays of taxpayer funds at federal and provincial levels.
But transparency also needs to extend to the disclosure of monetary and other benefits from drug companies and medical device manufacturers, which can be a significant motivator (from the patient’s perspective, at any rate) to doctors in terms of the decisions they make about patient care.
Too much in our health care system still operates in the shadows and behind closed doors. Transparency helps to build the trust the system must have if it’s going to meet the needs of patients and families. And, to be honest, if we don’t get a better handle on where all our healthcare dollars go — and everyone is able to measure that return — the system at some point will become unsustainable.
Time and again, patients and families who encountered medical harm report experiences of deception and stonewalling by the healthcare providers involved. Often, information was not disclosed before the harm occurred (for example, the risks associated with a particular drug) or there were efforts to cover up what actually happened. More generally, too many hospitals hide behind a wall that deprives the public of important information which they need to make informed decisions about their care and about the performance of their healthcare facilities. In every case, when a curtain of opaqueness is allowed to separate medical facts from those affected, the healthcare safety of everyone is placed at risk.
The Center for Patient Protection notes that in one landmark case with which it is familiar, an elderly Canadian patient was subjected to more than 4,000 documented medical errors at two Canadian hospitals over the course of a continuous six‐month hospitalization. This is a record for medical errors in a hospital setting which has no parallel in patient safety literature.
Yet the hospitals involved, including one of Canada’s most prominent teaching centers in Toronto, denied that a single error ever occurred and insisted that “all care was appropriate.” And although the family involved never commenced or threatened legal action, both hospitals resorted to lawyers to conduct their communication.
In Canada, hospital reporting of medical errors is governed by a patchwork quilt of uneven regulations and practices. It is impossible to know, for instance, how many pressure ulcers are occurring in hospitals across Canada or whether there is a superbug outbreak. In many cases where reporting is required, hospitals get to pick and choose what areas they want to report on. There is the added fact, as noted previously, that Canada’s hospital data — when and where it is made available — is based strictly on self‐reporting. There is no independent verification.
The idea that Canada would have an official similar to the U.S. Inspector General for Medicare and Medicaid who could conduct a review that found substantial underreporting of harmful incidents in the hospital setting, and that those findings would attract the attention of national legislators, is unthinkable to policy leaders. The idea that Canadian hospitals could be financially penalized for failing to follow certain safety practices, which happens regularly in the U.S., is equally beyond their comprehension.
It would not be tolerated if governments suddenly stopped reporting passenger airline disasters, or never required them to be reported in the first place. Do we rely on airlines or railroad companies to determine what went wrong leading up to a crash or derailment, or to decide what information the public has a right to know? Even near‐misses must be reported in a public forum. Such transparency is considered to be in the public interest. Between the U.S. and Canada, the number of hospital deaths from avoidable harm takes a toll equivalent to several fully loaded jumbo jets crashing every week. Yet no one really knows precisely how many deaths or injuries occur, or why.
All jurisdictions need the healthcare equivalent of the U.S. National Transportation Safety Board, which investigates major accidents that cause death or serious injury involving planes, trains and surface transportation vehicles. Such a body would look into systemic risks and situations involving outbreaks of infections in the hospital setting. Recurring types of medical errors would also be subject to investigation. Too much harm to patients occurs in the shadows and behind closed doors, inhibiting the safeguards that public awareness can provide.
Patient safety and transparency go hand in hand. A hospital that will not acknowledge that a medical error has occurred, or worse, tries to cover it up, is one that will not learn from its mistakes. And that is a very dangerous hospital. The public has a right to such information in order to make an informed decision about what may be life and death matters — and to determine which hospitals might be contributing more to their life, or death.
For this reason, and because of the numerous experiences of harm that have come to its attention, as well as the life‐altering personal experience that resulted in its founding, The Center for Patient Protection is a vigorous champion of changes both in hospital culture and in the law that will make healthcare systems more transparent and accountable, including those that support mandatory reporting of medical errors and harmful incidents.
In that regard, we strongly urge that providers make healthcare records of hospital stays available, without charge, to patients or appropriate family‐member substitute decision‐makers. Research shows that medical charts often miss important events, especially from the patient’s perspective. Informed feedback from patients and families can serve as a vital learning tool that can significantly benefit conscientious healthcare providers and, ultimately, all patients.
A safe patient is an informed patient. It is truly time for the healthcare system to come out of the shadows.
From the public policy perspective, transparency is essential for accountability. Without full information, neither policy makers nor patients can know whether clinicians and their organizations are delivering safe, appropriate, cost‐effective care.
From the quality and safety perspective, transparency is foundational for learning from mistakes and for creating a supportive environment for patients and health care workers. Transparency of all safety, quality, and cost data is also essential to the effective functioning of the health care delivery system. To make informed and costeffective decisions, all stakeholders—patients, clinicians, payers, providers, and policymakers—need to have full information in a form that is useful and understandable. If health care systems and clinicians don’t know about failures, they can’t fix them.
Not only does transparency promote accountability and improvement, but it lies at the heart of the relationship between a patient and his or her clinician. How can patients fully trust the clinicians and organizations from which they receive care if these clinicians and organizations are not fully transparent?
Without transparency, informed choice is impossible for either patients or payers. Without full, honest, open communication, patients cannot make informed decisions about their care or manage the resulting emotional and physical challenges when things go wrong. Moreover, transparency identifies best performers, allowing them to reap the rewards of their strong performance and allowing others to emulate their best practices. Patients have a right to full information about every aspect of their care. Without it, optimal care is an elusive dream.