Reaching Out to the Stars

"I will love the light for it shows me the way, yet I will endure the darkness because it shows me the stars."

- Og Mandino

When we first look at the night sky, we see only darkness. But after we blink, we start to notice the flickering light of the stars. They flicker because we see them through a turbulent atmosphere. And the longer we look, the more of them we see.

So it is with survivors of medical error - we are numerous, but we often feel alone until we find each other, flickering through the turbulence. We are strong and we shine.

Some have been shining for longer, or with more resources, and some are already changing the system.

Here are a couple more Canadian survivor websites worth highlighting:

The Patient Factor

Empowered Patient Canada

There are other Canadian groups listed through the site advocatedirectory.org, which is a project of Mothers Against Medical Error. We have much to learn from American advocates, who have more experience strengthening the patient voice in dialogue about patient safety.

Many Canadians have tenaciously pursued their own battles for answers, compensation and legislative changes to protect others; not all of them have websites. Many are working in their communities to advocate for their family members and friends, and helping survivors who stumble into their midst. Others have joined together for specific initiatives.

The closer you look, the more people you find.

What unites all these people are some inspiring characteristics: they remain independent of government so they can advocate for the patient interest without conflict*; they are often personally affected (through direct experience or grief); and they are committed to making the Canadian healthcare system better and safer, so that we all benefit.

Rhonda Nixon of Empowered Patient Canada sent me this song as encouragement, and I'm happy to share it with you:

*Independence in Canada can be difficult to maintain. There is little to no funding for patient-led initiatives. Some government grants for specific programs can be helpful, but sometimes these come with strings which contradict the public and patient interest. We must be ever mindful, and continue to push for more independent funding.

Reaching Out to the Wind

In reaching out to other survivors, we've heard a common theme of isolation.

Sometimes it feels, as survivors of medical error, as if we are alone in a vacuum or lost in some vortex in the universe. We reach out to people around us to tell them what happened, and we get what I call the five stages of rejection:

1 - Disbelief: Your story is crazy. I mean, in Canada? I've never heard of that before. Are you sure? That doesn't make any sense.

2 - Sympathy: Ok, if that happened, that's awful. You poor thing. What a horror story.

3 - Stereotyping "The Other": Why did that happen to you? What is it about you that would make that happen? I mean, I certainly wouldn't want to think that I'm vulnerable too.

4 - Leaving it to "the expert": I'm sorry. I just don't know anything about this, so I don't think I can get involved. I'm not a medical expert.

5 - The "shut down": Look, I'm sorry that happened. But I told you I don't know what to say or do, and besides, this is rather negative and scary. And I'd rather focus on things which directly affect me or which make me happy. Life is short and we all have to move on. You can't change the system.

So many of us encounter this reaction. And we further withdraw, give up, self-blame, self-harm, lose trust, get depressed, and swim silently in trauma. We're a bunch of fallen trees and nobody is listening.

When something like medical error happens to us, we suddenly become aware of another plane of existence, of the world of the injured and grieving. And we struggle to communicate about that world to those who haven't fallen through the holes yet.

We need numbers. We need a voice. And we need mechanisms of empowerment.

How do we get there? By learning to think and speak a little differently about the problem.

Let's start with affirmations:

We are numerous.

We are strong.

And together we CAN change the system.

Your response to new hospital transparency

How do we move forward from last week's success?

Many of you have congratulated us and asked us what this access to information will mean for individual patients and for healthcare reform.

We are pleased to tell you that the answers will come from your own questions. We encourage every concerned patient, family member, journalist, academic, and member of the public to file Freedom of Information requests to your hospital, to ask your burning questions about quality of care.

This human rights movement for patient-centred, good-quality, and safe care has "caught fire", a member of our community told us, as word is spreading about a new culture of transparency. We hope she's right. If you're not sure what you want to ask for in your FOI request, we're happy to help you.

"You've unleashed an avalanche [with access to information]", a nurse told us, because there are so many problems under the surface which will come out now. "That'll keep them on their toes," another healthcare provider said, suggesting that hospitals who know the public is watching them will be more careful about what they do.

A friend summarized the medical lobby's argument as to why they didn't want to share information this way: "Ignorance is bliss." She was suggesting that doctors and hospitals are worried that once the public finds out how many mistakes and dangerous exposures are really happening, it will be difficult for us to sustain trust in our healthcare system.

But several people also told us that we shouldn't forget about the good stories, shouldn't forget to tell our readers about good care and best practices. We agree. Because the answer to medical errors and safety failures is three-fold: full public reporting, patient-centred innovation, and patient power. And there are some great examples of these if we look at other jurisdictions and other countries. So ImPatient for Change will highlight some of these initiatives as we move forward.

We are ImPatient for Change but we are also cognizant that change will take time. We know Canadians want to feel proud of our healthcare system and proud of our record on human rights, so we feel our goals are achievable, with tenacity, determination and a spirit of truth and hope. We recognize that this is a journey of a million steps, and that lives of those we care about are on the line.

And we are not working alone.  Other patient groups, survivors and their family members, health coalitions, public health experts, lawyers, nurses, doctors, policy analysts, administrators, quality councils, activists and politicians have been struggling for years to improve our quality of care.  It's time to unite.

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.