CONGRATULATIONS!

Yesterday, November 29, 2010 was a landmark day for patient rights.  Mark your calendars.

And read more in the SUDBURY STAR!

We now have access to "quality of care information" from hospitals! 

The Ontario public just won the battle for hospital records, against the medical lobby and the government who were trying to keep them hidden, because of a solitary MPP and a growing number of citizens behind her. 

The Liberal government and Tory opposition quietly put forward amendments on Friday to Bill 122 (an act to improve accountability and transparency) on behalf  of a hospital insurance company, the Ontario Hospital Association and the Ontario Medical Association. 

The amendments, struck down on Monday, were designed to prevent the public from accessing any information from hospitals related to "quality of care" - everything from infection statistics not already released, to details about wait times, and the number of medical errors during surgery.

France Gelinas, NDP health critic, single-handedly refused her unanimous support to let them debate the Liberal amendment, because of lack of public consultation. 

France Gelinas, MPP for Sudbury, Ontario

She was able to stop the amendment because of pressure from constituents, patients (including ImPatient for Change), the Ontario Health Coalition, the Registered Nurses Association of Ontario, the service employees union, and members of the media who spoke out in the public interest.

Today is a great day for democracy and for a new kind of patient safety culture which includes patients. Patient rights are human rights and what is in the interest of patients is also in the public interest.

Transparency is the first step to fixing our healthcare system.  Now that we can find out what is going on, we can identify problems, find solutions, and put pressure on the government to implement them. 

When some issues have come to light - like C. difficil, Hep C, and issues around hand-washing and hygiene, we wrote, we pushed and we got some results.  Now we can expand this effort - those problems are the tip of the iceberg.

The bill, minus these amendments, will now go back to the house for third reading. 

UPDATE: Bill 122 received Royal Assent on December 2, 2010.

We're in the Toronto Star!

The fight for access to hospital records in Ontario is now a matter of public record, in the Toronto Star.

Today at 2 PM, the social policy committee of the Ontario legislature will vote on an amendment -- proposed by a hospital insurance company, the Ontario Hospital Association, and the Ontario Medical Association -- which will prevent you from accessing "quality of care information" from hospitals.

Versions of this amendment were tabled by the Liberals and Conservatives on Friday without public consultation, and once the vote goes through Monday, it is unlikely we can change the wording before it becomes law.  This is your democracy at work.

If you are troubled by this, enough to speak to the press about it, please contact us at impatient4change@gmail.com with your name, phone number (where we can reach you quickly), email, and a very brief summary of why you care about accessing "quality of care" information in hospitals.  If you give us explicit permission, we can then pass on a list of people for this issue to the press.  No information will be leaked to press without explicit consent, because we are very cognizant of privacy issues.

This is a rush situation, the press moves quickly and this is today's story.  So don't procrastinate, get in touch right now.

And please repost and retweet this blog post as much as possible today.

Thanks very much for checking out this blog and I hope you will join us, and lend your skills for this effort to improve the health care system for everyone.

Best, EPM (Every Patient Matters).

BREAKING NEWS - Hospital Insurance successfully lobbies Ontario government to hide medical errors

TORONTO, QUEEN’S PARK –
NOTE: NO reporters were present at the committee hearings.  All documentation can be provided.


Canada’s hospital insurance company has successfully lobbied the Ontario Liberals and Tories to keep information about medical errors and quality of care from patients and the public.

Both political parties quietly tabled amendments in support of the medical lobby on Friday afternoon and will be voting on them in a committee meeting Monday.  Once the government wording passes, it will likely become law before the next election. 

Injured patients who want to find out if there have been similar cases to theirs, academics who want to learn from medical error, and journalists who try to uncover holes in our medical system have all been stymied  until now by the fact that hospitals haven’t been included under Freedom of Information legislation.

A recent report by the Auditor General on Local Health Integration Networks (LHINs) lambasted the government for lack of transparency and the use of taxpayer funds by medical lobbyists.

This bill, the Broader Public Sector Accountability Act, was supposed to address the Auditor General's concerns by improving access to information and banning taxpayer-funded medical lobbyists.  But the spirit and language of the Act has been undermined by this recent amendment.

Excludes “Quality of Care” information

The medical lobby proposed the amendment to exclude "quality of care information" and "risk management" (a term that means risk of being sued) information from Bill 122, which brings hospitals under Freedom of Information (FOI) legislation and bans taxpayer-funded healthcare lobbyists.

The Ontario Hospital Association (OHA) says that sharing information will harm "patient safety culture" and that doctors will be reluctant to come forward if they are vulnerable to embarrassment and accusation.


The Conservative Party amendment, tabled by accountability critic Lisa MacLeod, used the exact wording suggested in the last-minute proposal by HIROC, the Healthcare Insurance Reciprocal of Canada (which represents the majority of hospitals in Ontario), the OHA and the Ontario Medical Association (OMA).  The Tories put the amendment forward on behalf of the insurance company.

The Liberals also put forward an amendment on behalf of the medical lobby, to limit public access to information about quality of care from hospitals.  Although they used more watered-down language, the effect is the same.  Two of the Liberal members of the committee voting on the amendment Monday are doctors, and Dr. Kuldip Kular has been a member of the Ontario Medical Association (OMA), one of the groups lobbying to keep the information hidden.

Medical error affects many people

According to the Canadian Institute of Health Information (CIHI), more Canadians are dying from preventable adverse events in hospitals than from breast cancer, motor vehicle accidents and HIV combined.  Many injuries and deaths are not reported in adverse event statistics, because they are attributed to the patient’s underlying medical condition. 

Surveys of medical error and adverse events show that the problem is bigger than is publicly recognized.  In a CIHI survey in 2003, one in four Canadians said they or a family member experienced a preventable adverse event during treatment and more than half of those had serious health consequences.  A tiny fraction of people hurt by preventable adverse events ever get to court, and even fewer receive compensation. 

Patient safety problems cost the system time and money, by extending hospital stays, over-using precious medical resources and reducing economic productivity through extended illness.

Public scrutiny of hospital practices which contribute to injury and death is an essential part of efforts to improve patient safety, as it would allow us to independently assess the gaps in the quality of our healthcare system and find out what the biggest sources of medical error are. 

Patient Safety Culture Needs Patients

The medical lobbyists told the committee that keeping “quality of care” information from the public would encourage doctors to come forward with problems they identify, and that they will be reluctant to admit to error if they are vulnerable to public embarrassment and accusation.  The insurance company said that even basic information, such as whether a hospital has "fever protocols", is too personal to doctors and shouldn't be shared.

The Ontario Hospital Association claimed that releasing information to the public would undermine patient safety culture.

"I object to this,” Cybele Sack of ImPatient for Change, a new patient rights group, told the committee.  “Patient safety culture needs patients."  Sack says she is not included in hospital adverse event statistics, even though she waited nearly six months for surgery after her appendix burst.  “In 2008 it was me,” she said about falling prey to medical error.  “Tomorrow it could be your mother, sister, son or grandchild.”

There is a growing opposition to this amendment.  The Ontario Health Coalition, the Registered Nurses Association of Ontario, and service employees union are all concerned that hiding medical information which could save lives and prevent injuries is against the public interest. 

Releasing “quality of care” information to the public would not compromise private patient information, as this is already protected under privacy rules.

Lobbyists did not ask to protect the identity of doctors who release information, they asked that the information not be made public at all. 

Public hearings about this legislation in Ottawa were cancelled by the government without notice.

-30-

ImPatient for Change is a new patient rights organization whose goal is to exchange information about patient safety and to advocate for medical reform in the public interest.  We believe that Every Patient Matters.

For more information or for copies of relevant documentation for this original news story, please contact: impatient4change@gmail.com

Open Letter to Premier of Ontario, Canada

Re: Bill 122 amendment - Transparency Denied

Premier of Ontario, Dalton McGuinty

Dear Premier, members of the Social Policy Committee and Liberal Caucus:

During our presentation to the Social Policy Committee about Bill 122 on Tuesday November 23, we expressed serious concern about the amendment limiting public access to "quality of care" information from hospitals, proposed by the hospital insurance company (HIROC), the Ontario Hospital Association (OHA), and the Ontario Medical Association (OMA). 

We are disappointed to find out that your amendment, which you released Friday November 26 and will be voting about on Monday November 29, without public consultation, supports the request by the medical lobby, despite the fact that this is an amendment to anti-lobbying legislation designed to increase transparency and accountability.

The language of your amendment reads that the following should be excluded from information released to the public (24 - 6.1 - 18 - 1- j): "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 to programs and services provided by the hospital." 

What is a committee - is this something that can be struck in a staff room anytime the hospital wants to keep information from the public?  Your vague language appears to be a "compromise", but with who?  Why is there a need to compromise public interest with the wishes of the insurance company? 

If you wanted to define committee more clearly, you need only have referred to the exemption already available under QCIPA (Quality of Care Information Protection Act).  Why didn't you do this, when this already has clear parameters of exemption?

We are also concerned that several members of the committee are medical doctors, and thus possibly members of the Ontario Medical Association (OMA), which put forward the amendment you have adapted.  Would those members please recuse themselves from the vote, so as not to be in a conflict of interest position?

The Ontario Hospital Association claimed that releasing information to the public would undermine patient safety culture.  We object to this.  Patient safety culture needs patients.  We need dialogue about medical error.  Patients, academics, media and members of the public must get access to information which will help advance the cause of patient safety.  Otherwise, we won't be able to independently assess the gaps in the quality of our healthcare system and we won't know what the biggest sources of medical error are.

Many lives are on the line here.  According to the Canadian Institute of Health Information (CIHI), more Canadians are dying from preventable adverse events in hospitals than from breast cancer, motor vehicle accidents and HIV combined.   In a CIHI survey in 2003, one in four Canadians said they or a family member experienced a preventable adverse event during treatment and more than half of those had serious health consequences. 

If hospital information is released to the public, we can help you figure out why this is happening and contribute to solutions.  There are a lot of good solutions out there, many of which our hospitals haven't tried or aren't even aware of - broader-based dialogue means more ideas for improving the system, more vigilance, and better care.

We ask that the Liberal members of committee vote against your own amendment, so that information about the quality of hospital care can be shared, excluding identifying patient information already protected in the Freedom of Information and Protection of Privacy Act (FIPPA).  By voting down your own tabled amendment, you will be sending the message that patient right to safe care is a priority, above any other interests.

Thank you very much for your time and consideration. We look forward to your reply on an urgent basis, given the immediacy of this issue.

Sincerely,

ImPatient for Change
impatient4change@gmail.com
http://www.impatient4change.blogspot.com/
FB: ImPatient for Change
Twitter: @Right2SafeCare

SENT TO: Premier of Ontario Dalton McGuinty and social policy committee members Dr. Shafiq Qaadri (chair), Minister of Health Deb Matthews, Dr. Kuldip Kular, Vic Dhillon, Phil McNeely, Rick Johnson, Ted McMeekin, Jean-Marc Lalonde, Khalil Ramal.

Conservative members of the social policy committee (who tabled the exact wording of the insurance/OMA/OHA amendment, on behalf of the insurance company) are: accountability critic Lisa Macleod, Sylvia Jones and Elizabeth Witmer.

NDP members of the social policy committee (who oppose the amendment) are: health critic France Gelinas and Cheri Di Novo.

Finding the will

If you're looking at this blog, or checking out our Facebook page, or following us on twitter, and considering participation, but feeling self-doubt, this post is for you:

We all hear messages from family, friends and associates to give up: "Just forget about it and move on" and "You'll never change it, that's just the way it is."

Maybe they're right or maybe they're not, but some things are worth investing time, energy and resources into because as a good friend quoted to me, "to have what you've never had, you must do what you've never done."

How do we know if a group like this will grow and contribute to measurable change, if we don't try? And if it stalls, aren't there other steps we can take, course corrections on our journey?

There is always a balance one has to think of - between struggling for improvement and accepting things as they are so we can find peace. And it's good to take a step back and look at the bigger picture.

But as far up into aerial view as I can get, this feels like it's worth doing. People are dying and getting hurt unnecessarily and there are tools we can use to prevent that from continuing.

All of us survivors have already demonstrated endurance, commitment to life, self-determination and faith. Now we can use those skills to help the system heal too.

If you've got words of inspiration, I hope you'll share them here in the comments. And then send us an email to impatient4change@gmail.com and join in! Looking forward to seeing you soon.

Why Ombudsman Oversight is Essential (Part 1/3): Accountability

MPP Rosario Marchese's private member's bill to amend the Ombudsman Act to include hospitals and long-term care facilities, Children's Aid societies and school boards will give Ontarians a window of opportunity to change the system.*

Other bills have been introduced to attempt this before, but the provincial government defeated them, caving to lobbying pressure by the medical industry. This is our second chance; we need as much public support as possible.


THE PROMISE OF ACCOUNTABILITY

We lack a culture of accountability.

The government-funded medical industry has a large piggy bank with which to protect their interests, but suing is too expensive for the common person, so the odds are stacked against most patients should a complaint find its way to Canadian courts. Even if you win, your case will not likely result in any direct improvements for others.

If you go the other route and take your complaint to the self-regulated colleges for doctors and nurses, you may have to parse your complaint to death, and there probably won't be significant consequences for the offending professional if he or she is found guilty.

Neither the courts nor the colleges deal with patterns of error across the system, and neither generates binding recommendations which will improve the system.

But most people don't even make it to the courts or the colleges - they get smoothed over by the hospital's Patient Relations team, or they send a letter to their MP or MPP which gets shelved, or they give up and cry to their family, friends or therapist.

Because it is so onerous for patients to complain using current channels, to get justice, and to make changes, the message is that patient safety doesn't matter.

Efforts are made to improve the appearance of safety in order to prevent public alarm, and individual professionals may do their utmost to uphold safe practices. However, the medical community is not confronted with sufficient independent public reports which hold them accountable for preventable systemic error and include binding recommendations for improvement. And the Disclosure Act allows them to offer empty apologies without assuming liability. For these reasons, the industry continues to say, "to err is human", instead of acknowledging that they are negligent when they don't act in good faith to prevent dangerous situations, or when they actively contribute to them.

All Canadians are patients and we are all at risk. The only way to make patient safety a bigger priority is to hold the doctors, nurses, hospitals and others accountable for individual, group and systemic errors. If something bad happens to us, we want to know that there is a mechanism in place to help us. And we want to know that the experience of others before us was used to create a culture of care.

Ombudsman oversight will mean that if you or your loved one has a bad hospital experience, you can call his office and he may independently investigate it. He will generate reports which will pressure the government to implement changes designed to prevent another similar event - and hopefully to encourage best practices.

*Note: The amended Act is being introduced for First Reading at Queen's Park on Monday, November 15 at 1:00 P.M.

Why Ombudsman Oversight is Essential (Part 2/3): Getting Results

Giving the Ombudsman oversight over hospitals will give us a chance to measure our problem, investigate it, and to start saving lives, time and money. The first step to solving a problem is for us to admit we have one.

A CHANCE FOR MEASURABLE RESULTS

Ontario is the only province with self-policing hospitals - and self-policing doesn't work.

Ontario is missing several layers of oversight available in other provinces. The Ombudsman of every other province in Canada has jurisdiction over hospitals, and some provinces also have patient safety offices within Regional Health Authorities which can launch investigations based on patient complaints.

Why is Ontario less accountable to taxpayers?

We know that the previous efforts to give the Ombudsman power to investigate hospitals in this province were defeated by government, after lobbying by medical industry groups. So the medical lobby may be stronger here.

In Ontario, Local Health Integration Networks do not have the power to investigate hospitals as hospitals are considered autonomous. Notice the absence of the word Authority in their name, compared to Regional Health Authorities in other provinces.

Are we having more injuries and deaths because of this? It's a good question that's hard to answer because we're not obliged to collect the data and because most injuries and deaths from medical error go unreported.

But what we do know is this: When it comes to initiatives to hold our medical system accountable for medical error and poor care, Ontario is behind the national average. We also know that the current culture is costing us.

Medical errors are costing lives.

How many? Common estimates are that over 24,000 Canadians die on average each year because of medical error and that thousands more are injured as a result. Unreported injuries and deaths may be many times greater than reported, because of inadequate mechanisms to complain. The original illness or complicating symptom is reported as the cause of death, instead of naming the poor care as the real culprit.

How many people aren't counted? I know from personal experience that it is very hard to be included in these statistics, even if you tell the hospital, get a lawyer, complain to your political representatives or write a blog about it.

Sometimes there are patterns to the injuries and death - more women who are affected, for example, or more non-English speakers, or other. The only way for us to find out what is happening is for us to have more data, and we must collect it before we can get the answers and devise the solutions. Another way for us to start counting deaths and injuries is to ask the public to call and write to the Ombudsman's office with their concerns and to have those complaints logged and analyzed.

Every patient matters, so let's starting counting them. Ombudsman oversight gives us the power to do just that.

Medical errors are costing time.

How much? It's hard to estimate, but if you think about it on a smaller scale and then multiply it by the numbers affected, it is easier to see. If one patient's surgery is delayed, they lose that time. If they deteriorate because of inflammation, spreading disease, or atrophy from lack of activity, their recovery time will be even slower - sometimes far longer than the length of the illness itself. If that patient has to go back to ER a number of times because their condition wasn't dealt with properly the first time, that costs the hospital, doctors and nurses time. And it costs time to people who are waiting behind that patient in line. And to the families of all these people, because they don't have the help of this person, so they have to pick up more responsibility. And so on, the time loss spreads through the whole community. And as we all know, time is money.

Medical errors are costing the economy.

We lose in productivity, in lost tax revenue when people are disabled, in wasted money spent on more follow-up visits, more tests, more drugs, and more complications arising from all the extra steps. We want to save money, but we still don't seem to understand that excellence is cheaper than poor care.

We need Ombudsman oversight so we can measure, investigate, and report on the systemic and preventable errors which are wasting our precious human and medical resources. And we need binding recommendations.

Why Ombudsman Oversight is Essential (Part 3/3): Creating Change

AN ADVOCATE FOR REFORM

Lack of accountability is on purpose. Doctors, hospitals and their malpractice insurance agencies are actively lobbying against accountability.

There are a number of professional associations which spend taxpayer-originating resources fighting against patients who've been injured by the system.

We need to change this. One way to start is to use some tax funds to investigate patient complaints, with the help of an independent office like the Ombudsman. This will help balance the playing field.

Another thing we need to do is to identify this use of tax funds for medical industry protection and to inform the public about it.

When bad things happen to patients, and I speak from personal experience, one of the strongest emotions you feel is a desire for this to never happen to another person, to know that it didn't happen in vain.

We need to help patients contribute their stories and we need to learn from those stories for the sake of all our safety. Right now, patient complaints are falling between the cracks and we are failing to learn from them!

Not addressing systemic medical errors and patient complaints is a form of neglect. In other industries, if people were dying and injured because of services they received, managers would be obligated to find out why and to do everything in their power to prevent it from happening again. And yet we're talking about HEALTH care here and it seems that our health and safety haven't been big enough priorities to merit that kind of investigation.

We need health care FOR the people, not TO the people - health care in teh patients' interest rather than in the interest of those benefiting from current failures. We owe every patient care which prevents injury and death, not which contributes to it unnecessarily.

Giving the Ombudsman the power to investigate patient complaints will not immediately fix the system, but it will give us the ABILITY to make changes. Ombudsman oversight offers opportunities: to create a culture of accountability, to achieve measurable results, and to help us advocate for reform.

Once we get that Ombudsman oversight, many challenges will remain: to ensure that the Office makes the analyzed data public, that investigations are fair and effective, and that recommendations are implemented and changes measured. There are many steps on the journey to safe, quality, patient-focused care. Let's get going.

Ypres-Wash: A Dream of Remembrance

Months into recovery, I dreamed that I was pursuing answers in the hospital about systemic medical error, and a witty young feminist French philosopher (probably Simone de Beauvoir) followed me around the corridors whispering "Ypres-Wash, Ypres-Wash".

I tried to correct her by saying "Ipperwash? What does that have to do with this?" But she kept going with this strange French pronunciation - Ypres-Wash, she said, with a grin and a sharp eye. I couldn't get the word or dream out of my head until I looked it up.

It turns out that Ypres, Belgium is the site of the museum of Flanders Fields - the name of the poem to commemorate the dead in WWI.

It is also the place where Dr. Norman Bethune - famous in Canada for his advocacy for both medical reform and universal health care - was injured in battle in the same war.



Ipperwash is the name of the Ontario Provincial Park which was expropriated from a First Nation, and where one descendant of the same aboriginal nation was shot by police, when his family tried to take the land back. It took a public inquiry to find out what happened and who was responsible for the decision that led to Dudley George's death.

And so my dream brought me vision - that as with Flanders Fields, we must not break faith with those who die from preventable medical error, and that we must pursue truth and social justice with our government in the best Canadian tradition:



...We are the Dead. Short days ago,

We lived, felt dawn, saw sunset glow.
Loved and were loved. And now we lie
In Flanders Fields.

Take up our quarrel with the foe:
To you from failing hands we throw
The torch; Be yours to hold it high.
If ye break faith with those who die
We shall not sleep, though poppies grow
In Flanders Fields.

-poem by John McCrae

New Ombudsman Oversight Bill



Ontario Ombudsman Andre Marin,
bulldog for accountable government,
will have power to investigate hospitals
if proposed bill becomes law.

A new effort has been launched to give the Ontario Ombudsman power to independently oversee and investigate hospitals across the province. Please support this campaign!

On November 9 at Queen's Park, NDP MPP Rosario Marchese will hold a press conference to announce his private member's bill to amend the Ombudsman Act to include hospitals, Children's Aid Societies, and other government institutions.

Currently, Ontario is the only province with self-policing hospitals and it is costing us, in unreported deaths and injuries. The government has turned down the Ombudsman's intervention before, so let's hope this time the bill passes. That way, if you or your loved one gets hurt while under medical care, you'll have a bulldog on your side.

What: Press Conference to Announce Ombudsman Oversight Bill

When: Tuesday, November 9th, from 10 AM to 1 PM

Where: Queen's Park, Toronto

For more information, please contact:

Sasha Tregebov @office of MPP Rosario Marchese: 416-325-9092
Sheila White @office of MPP Andrea Horwath: 416-325-2777