Sunday, April 17, 2011

Second thoughts on transparency in Ontario and Denmark

Barb Farlow, a patient advocate in Ontario, mentions a debate going on in that province. Here is an excerpt from a legal blog called Legal Feeds:

Governments often slip little-noticed and seemingly unrelated items into their spending plans, but just a single line in the recent provincial budget measures bill is causing a split within Ontario’s medical community.

Section 15 of the “better tomorrow for Ontario act,” which is currently in second reading before the legislature, would amend the Freedom of Information and Protection of Privacy Act to provide an exemption for the release of “information provided to, or records prepared by, a hospital committee for the purpose of assessing or evaluating the quality of health care and directly related programs and services provided by the hospital.”

The provisions take effect Jan. 1, 2012. The new amendments come just a few months after the government passed Bill 122, the Broader Public Sector Accountability Act, that provided broad public access to hospitals’ administrative and policy-related information for the first time by subjecting them to the freedom of information act. The latest proposed changes would partially reverse those reforms.

Health Minister Deb Matthews has defended the move to exempt information related to quality of care from public release. According to the Free Press, Matthews believes subjecting hospitals and doctors to greater scrutiny would prevent open dialogue about problems and how to fix them. “They must have a very open and frank discussion,” she said.

I noticed a similar attitude among colleagues attending the recent conference in Copenhagen, summarized in an article by Anders Heissel in Dagens Medicin. After I gave my talk about our hospital's decision to disclose infection rates and medical errors broadly to help stimulate process improvement, some had these reactions:

Apparently most of the Danish hospital managers who were present felt that one should be cautious in opening the door to more information that exposes the hospital's deficiencies.

The Director of the country's largest hospital, Odense University Hospital, Jane Kraglund, believes that the hospitals already publish enough data about quality.

"Our quality is transparent, but we do not learn much by putting a malpractice on the website. When we make mistakes, we have a strict system where the error is systematically reviewed, but it will not necessarily come out to the public. Moreover, more information about risk would be more confusing for the patient, "says Jane Kraglund.

Steen Mikkelsen, Director of Hospital North (hospitals in Roskilde, Køge, Holbæk, Kalundborg and Fakse), said,

"We are constantly in a competitive situation, and our standing could be damaged if there are too many bad stories about a place where you expect to get the best treatment. Clearly we will inform patients about possible errors, but the question is whether we should only do it to the patient or to the whole public. I am in doubt as to whether he mistakes we make always give rise to learning."

Proving I guess, that the survey I did that day in Denmark may not have been quite honest or accurate!

Proving also that a fundamental problem is that doctors do not believe the public will accurately or fairly judge hospitals that are honest about such matters. We never found that to be a problem at out hospital, and we were as transparent about such things as you can imagine. Our market share actually grew following our decision to be open about our clinical results, as clinical partners who agreed with our philosophy referred patients to us.

It is time for health care professionals to understand that patients can be trusted to be active partners in process improvement. Disclosure of clinical outcomes is a first and necessary step along that path.


Mary Ellen Mannix,MRPE said...

Thank you for bringing the global condition of transparency in medicine home. What other hospitals in the US have followed your stellar lead? Ironically just yesterday I was wondering about how far can we get with transparency in US medicine when the decisionmakers in medicine & safety continue to work more loyally to misguided clinicians then with devoted patient advocates?

Gil said...

The Patient-Physician relationship is sacrosanct. Without the fundamental Trust of the Patient in its Healthcare providers, Physicians, Nurses, Pharmacists, Hospital, there can be no hope for any effective treatment, relief.

Brian S. McGowan, PhD said...


I shared the Kumar and Nash Scientific American article with about 60 peers & colleagues from around the country - all CME professionals in a variety of settings. About two days later I received an email telling the following story:

"I presented the Kumar and Nash article to our hospital's CME committee and one 'long-time' psychiatrist reacted quite passionately - 'we can never let the public know about this bad is embarrassing' "

In this situation, the attitude of the 'embarrassed' Doc changed following a prolong discussion among the committee members about the need to be transparent and confront both national-level and local-level performance data.

While maybe I should not be surprised that the attitudes that 'information is power' and 'we must control the information' still exists in the healthcare professions - my undestanding is that many at the planning table were surprised...suggesting that there is a a great heterogeniety in how physician-leaders see the subject.

More than this, I wonder how many others sitting at that planning table had the same reaction to the Kumar and Nash article, but bit their tongue rather than speaking seems the vocal critics will be easy to address, but much of the solution to this information problem will lie in our abilities to root out the quiet skeptics.

Culture change takes time, especially when there appears to be a cadre of HCPs that are quietly holding onto their need for control.

I hope this makes sense...

e-Patient Dave said...

So, Gil, I understand your point - I've personally experienced the therapeutic effect of confidence in my physician. I had an episode like that earlier this month.

But my primary doesn't in any way deny that healthcare can be dangerous. He illustrates that the sacrosanct relationship does not have to be built on delusion.

Have you ever spoken with a mother whose baby was killed by a medical error? Do you think it's ethical to hide that chance from the next parents?

Do you consider a relationship built on false trust to be more important than finding and fixing the reasons those things happen?

Do you honestly think there is no hope for effective treatment if we aren't deluded?

Please think about this. Think about how my physician achieves that relationship without hiding the risks.

e-Patient Dave said...

Here's one example of the problems our denial causes, over and over and over:

Rheumatoid arthritis blogger Kelly Young (@RAWarrior, tweeted today:

#QuoteOfDay: RA patient found 5yr old receipt “He tested me for #Rheum factor & it came back positive. Dr never said a word.” #GiveUsOurData

That's not rare. Some internal medicine journal last year reported that 14% of lab results are never reported to the patient; patient safety advocate Sue Sheridan lost her husband after his diagnosis of spinal cancer got lost; I know a Dutch fellow (with great doctors!) whose cancer diagnosis sat in a folder, undelivered, for two years.

Over and over I come back to what IHI's Jim Conway said here last year: Merely being extraordinary professionals is not enough to assure perfection. As long as we deny this, or think better care will result from hiding this fact, our families will be subjected to a real and hidden danger every time we subject them to care.

Please - please - let's acknowledge it and be open about working together to reduce the risks. Let Patients Help. And that starts with honesty.

alexandra drane said...

At some point this is also about marketing - good old fashioned marketing. Which the healthcare space sort of stinks at. And it's about brave leadership. If we all agree that the only way we are going to see the very desperately needed improvements in quality is to lay bare the very processes crying out for that improvement, then the task needs to turn to - how do we sell that to folk? How do we include patients - really PEOPLE - in this mission? How do we inspire them with the realization that staying aligned with their doctor and their system, being active participants in their dynamic improvement, internalizing that we are all human and could all use help in getting better at what we do...THAT is the only way we are going to finally see some of these metrics move. It's got to be a group effort. It's got to be a full bore aligned and coordinated attack. It can't be hidden or it fails - what's the definition of insanity? Doing the same thing over and over again and expecting a different result. We need brave leaders who can tell this story, inspire their community, make change happen. And to Dave's point - LET PATIENTS HELP! LET PEOPLE HELP!!

Every Patient Matters said...

Thank you very much for writing about our predicament in Ontario, Canada, where our government is being influenced to put insurance and hospital lobbyist interests over the public interest.

A culture of secrecy does not build a culture of trust.

We have a public healthcare system in Canada and that is a point of patriotic pride for many up here. But how public is a healthcare system that hides its quality information from citizens?

We appreciate your support in accessing hospital information in the spirit of transparency and accountability.

Every Patient Matters said...

If you'd like to express your thoughts about the importance of, and effectiveness of, hospital transparency directly to the nine politicians making this decision, please send an email before 5 PM on Thursday, April 21, to the Clerks of the Finance & Economic Affairs committee: and
(please cc: us at, as we'd like to read your statement too).

If you need more information about this topic, please visit us on Facebook at Every Patient Matters.

Thursday, April 21 is the last day for public input to the committee, but the vote on the anti-transparency amendment takes place on Thursday, May 5.

This amendment has several monikers: anti-freedom of information amendment, anti-transparency amendment, and hospital secrecy amendment. But it is officially known as Bill 173 s.15 .

Thanks very much for your time.

Barb said...

From Facebook:

Thanks Paul! That great!! We are working hard on bringing major players on board. There is a government hearing on April 21. Unfortunately, the major media has not picked the story up in the way we would like.

Barry Carol said...

Aside from the skill of the doctors actually treating the patient, I wonder what metrics doctors and nurses consider most relevant in assessing the quality of hospital care when seeking treatment for themselves, family members or friends. If they can determine care quality with reasonable accuracy through either their direct knowledge or their ability to access an informal network of other doctors, nurses and hospital executives, why can’t I and other patients have access to the same information despite our lack of connections? I get more than a little impatient with the mentality that patients and the general public can’t be trusted to use this sort of information wisely, fairly, and in our own best interest.

e-Patient Dave said...

Great thought, Barry! (Long time no chat.)

Do they HAVE metrics to consult? Or is it just word of mouth - do they (like consumers) phone a friend and ask where's the best/safest place for condition X?

Anonymous said...

No, Dave and Barry; at least in my area it's strictly word of mouth. They don't really "get" the metrics any more than the average patient does, and probably less than an e-patient! It's reputational based on who knows whom (Dr) and what the docs practicing there think of the care based on their own experiences. Which, of course, may vary widely depending on the individual department, who runs it and how good they are (I am speaking of staff as well as physicians).......


Paul Levy said...

Brent James uses the term "regional medical mythology" to describe the different approaches taken to care for patients with similar diagnoses, depending where they live in America. He makes clear that evidence-based care is unusual and not taught in medical school or residency training. Rather, habit drives behavior.

An indicator of that is the point raised by nonlocal. Doctors don't use metrics for evaluating care for the patients whom they are referring. It is based on reputation, word-of-mouth, conjecture, and guesswork.

Perhaps patient advocates like Dave can help the profession start to move towards a more scientifically rigorous approach to care.

Gail Buerger Kerr said...

The following comment from the original post was telling - - it's not about quality of care for some hospitals, it's about continuing to attract patients. Just the idea that the admininistrator would consider revealing information after someone has become a patient in the hospital but not before, so he could choose another hospital, says an awful lot. Here's the quote "We are constantly in a competitive situation, and our standing could be damaged if there are too many bad stories about a place where you expect to get the best treatment. Clearly we will inform patients about possible errors, but the question is whether we should only do it to the patient or to the whole public."

Anonymous said...

The commitment to greater transparency was a turning point in BIDMC history. It was a rare opportunity for an institution to turn a corner together, and it would not have been possible if community and ethical aspirations had been absent. Very visible community-level conversations about values, candid clinical discussions about risks, and ambitious board leadership created the right environment for Paul's steerage through new waters. Such a culture is a very difficult thing to develop, and given the pressures and pull of status quo (well described above), an easy thing to lose. There are no substitutes (or IHI would have found them), and no short-cuts (advertising can't buy you internal trust), and no short-term payoffs worth losing claimed ground. Intense competition is a given, but transparency creates new territory for engaging patients, communities, scientists, and educators to innovate. How can you invent in the dark?

Transparency is not just a technical problem or process improvement problem, but a human problem. Some providers and some leaders can pretend that they are autonomous, that their work and their discussions are immune to scrutiny. But the respect of the nurse and the staff looking over your shoulder is precious. And humans like to talk. The patient and the community, they too, are not lulled by marketing and status in the face of harm and neglect. Transparency requires social and informational currencies that medicine would do well to practice. As the increasingly educated and motivated public becomes more involved, the costs of not developing this muscle will far outweigh the fears of trying it out.

Sholom Glouberman said...

Patients must begin to become more engaged in the system so that they can declare their interest in these kinds of issues. It is not merely a lack of transparency but the exclusion of a patient perspective from the whole discussion. We will gradually make ourselves part of the process that decides these kinds of issues. So what disturbs me quite a lot is that once again others are speaking for us and saying that it is not good for us to know what is happening in our hospitals.

Sholom Glouberman
President of the Patients' Association of Canada

e-Patient Dave said...

Good to see you gain, Sholom. I agree with everything you say!

e-Patient Dave said...

Via Barb Farlow (first commenter above) on Facebook IHI Patient Advocate page, here's the Ontario Hospital Assn's rationale:

This subpage says "
Knowing that records of these discussions remain private is an important measure in making hospital staff feel secure enough to point out possible areas for improvement and participate in any investigations... if a hospital’s well-established culture of safety were to be compromised, it could be detrimental to the patients we serve."

See the full site for context, and other Q&A.