Who Speaks For Patients? Repost of Paikin’s Blog

StevePaikin2010_22Steven Paikin, from TVO’s The Agenda, wrote a great blog. Every stakeholder seems to have a powerful organization, except patients. Who speaks for patients?

This is more important than any content I have right now. Here’s Mr. Paikin’s post in full (or click the link to his site).

When will Ontario’s Health care system finally focus on the patient?

by Steve Paikin

The people of Ontario spend $50 billion a year on the province’s healthcare system, and that’s only through their taxes. For many, of course, there are user fees, co-payments, drug costs and private insurance premiums on top of that.

You’d think all that money going to doctors, nurses, hospital workers and administrators would ensure we get the best care, and that the patient experience would be at the centre of that focus.

Think again.

There’s a growing realization that in spite of the huge dollars spent on treating sickness in Ontario, the patient actually isn’t at the centre of everything. And that’s becoming increasingly unacceptable given how much we’re spending and how unsatisfactory too many patient outcomes are.

Recently, The Walrus magazine convened its annual Health Leadership Dinner, at which several dozen of the leading figures in Ontario health care attend to debate the biggest issues of the day. The dinner operates under a form of the Chatham House Rule, meaning what’s said can be repeated, but not attributed to the speaker. I’ve moderated that discussion for several consecutive years now, and I can tell you, those rules do encourage a very free-wheeling, honest discussion. Over the years, several ministers of health, deputy ministers of health, assistant deputy ministers of health, along with numerous stakeholders in the system have been in attendance.

(Full disclosure: my wife founded and chairs the dinner; she’s a volunteer director on the foundation board of The Walrus).

The portrait of Ontario’s health care system that emerges is unsettling. “The fatal flaw in the system is a lack of integration of care and services,” one observer noted.

That observer’s check list looks like this:

  • Too many vital services are not covered by the Ontario Health Insurance Plan.
  • The system operates in silos.
  • It’s not remotely ready for the demographic changes that are coming.
  • Stakeholders operate as if the system is theirs, rather than the patient’s — for example, patients still need to pay to get photocopies of their own health records.
  • The system is still burdened by 1960s architecture that often makes putting in new state-of-the-art equipment difficult.
  • Patients need a “Sherpa” to navigate their way through the system.

“The Ontario health care system isn’t in crisis,” this observer said. “It’s in stasis.”

Furthermore, patient input into making improvements is treated as secondary and frequently met with suspicion, according to another critic.

“When we meet with the ministry, we’re forced to sign confidentiality agreements,” this critic says. “The public doesn’t know what goes on because all the meetings happen behind closed doors. There’s a lack of respect. Pundits and experts are there, but people who represent actual patients are evicted. The government tries to intimidate us.”

Not only that, everyone who works in the health care system has a special interest group representing them:

  • Doctors have the Ontario Medical Association.
  • Nurses have the Ontario Nurses’ Association and the Registered Nurses’ Association of Ontario.
  • The Ontario Hospital Association represents the hospitals.
  • The Canadian Union of Public Employees and other unions represent other workers in the system.
  • Administrators get a seat at the table through Local Health Integration Networks and hospital CEOs.
  • The Ontario Long Term Care Association represents those who run facilities for those who can no longer live in their own homes.
  • Home Care Ontario represents those organizations that provide home care.
  • The Ministry of Health and Long-Term Care has ample numbers of bureaucrats setting policy.
  • And, of course, the government steers the ship via the minister of health and an associate minister of health, not to mention the premier’s office and the president of the Treasury Board, who must approve all spending.

Who, on this long list, is supposed to represent the patient? Theoretically, of course, they all do. But too often, some critics say, the patient’s interests take a back seat to those of the stakeholders: The “players” in the health care system want things from government; government, in turn, tries to placate those stakeholders to the extent it can. As the $50-billion pie is divided among the players, who represents the end user so his or her say can be taken into account?

Are things changing? Hard to say. Representatives from the Ministry of Health told the dinner that patients are invited to discussion tables to participate in policy-making sessions. (Critics say their presence is mere tokenism).  However, the Ontario Government will also hire a “patients’ ombudsman” sometime in the spring — a new watchdog whose sole responsibility will be pursuing patients’ complaints with the healthcare system.

While most people I’ve talked to are encouraged by that development, they also note that’s a “downstream” solution. In other words, the harm has already happened once a complaint is laid. How can the province change the way it does things to ensure problems don’t happen in the first place — in other words, find an “upstream” solution?

One idea that emerged at the Walrus dinner: perhaps the government needs to create an assistant deputy minister for the patient and caregiver experience — someone whose job it would be to filter every new policy change through the eyes of the patient. Under the Liberals, there are 16 assistant deputy ministers in charge of several different sectors such as health system information, drug policy, communications, corporate services, human resources, negotiations, strategic planning, long-term-care homes, accountability and performance, and quality and funding.  But there is no one that high up on the ministry organizational chart whose sole mission is the patient experience.

One former university president in attendance at the dinner said it wasn’t until he created a “provost in charge of the student experience” that the yardsticks really got moved at his institution.

Is it time to create an assistant deputy minister for the “patient experience?” And if it isn’t, how will the patient’s voice genuinely be heard in an increasingly complex and expensive system?

16 thoughts on “Who Speaks For Patients? Repost of Paikin’s Blog”

  1. There are a lot of good points that Steve Paikin makes in the article. I would like to just make two points. With all the bureaucracy that we have now, should we really need to create another bureaucratic position? As Steve implies, it seems that there are so many advocates for so many that the running of the health care system has just become lost in all that bureaucracy.

    re: “Stakeholders operate as if the system is theirs, rather than the patient’s — for example, patients still need to pay to get photocopies of their own health records.”

    It is clear that the patient is entitled to his records but that does not mean that the person supplying the patient copies of the records is not entitled to be paid for providing them. Even if the patient brought in his own photocopier or smartphone to take pictures of his records, my staff would have to be there to access the files and supervise the files that MUST be stored by me. I do not believe that just because my patient has the right to his file means that it should be provided at my cost.

    1. As usual, I agree with your comments, Gerry. Excellent!

      I think Paikin fingers the key issue, but I don’t agree that more bureaucracy is the way to fix it. Having said that, overall, I’m so pleased to see someone talking about it.

      I read the “pay to get photocopies” as written by someone who just does not understand the issue. It feeds on the assumption by patients that 100% of everything to do with doctors’ offices is ‘free’. I trust he did not know any better.

      Thanks so much for taking time to read and comment!

      Best

      Shawn

      1. Steve Paikin is a very astute guy. I am sure once the copy issue is explained to him he would understand.

    2. Not for nothing but your fee for service should have covered that piece of paper (or 1000 pages in the patient chart). So in effect the Government of Ontario actually owns that chart. Again, not for nothing, but I thought there were concerted efforts to get MD offices to move into the 2015 ie. electronic medical record based (as funded by the Ministry), negating the need for ‘copying’. I am merely being provocative, not adversarial. The Ministry is spinning its wheels (ie spending money) on things like http://www.hqontario.ca/ or https://www.ehealthontario.ca or Canada Health Infoway but I don’t know what these pointy heads or consultants are giving us….big deal – a chest film in Sarnia can be reviewed in Hamilton, or a CT head at St. Mike’s is viewable in Wawa – was this really a priority?

      1. Thanks Jimmy,

        The schedule of benefits explains what a fee code pays for. OHIP covers medical acts, not photocopying.

        Cheers

        Shawn

  2. An excellent post. Thank you, Dr. Whatley, for sharing it. Patients need to know where they stand in the health care system because I don’t think most have the foggiest idea and don’t seem to particularly care as long as “they” and the ones they care about are receiving the care they think they need. Unfortunately most are not grasping the fact that the “perfect storm” is fast approaching that will threaten everyone’s health care. It boggles the mind that with everything that is spent on health care the system is not top notch (like it used to be) and I think Mr. Paikin has hit on many of the reasons why. Shared to Facebook (two groups) and Twitter.

    1. Well said, Valerie!

      It gives me hope knowing that there are those, like you, who know and care about what’s going on. People do not understand what’s happening until they get sick.

      Thanks again for your sustained interest, for reading and for sharing it!

      Best

      Shawn

  3. The observer who had a sore point about the patient needing to pay for a copy of their medical records needs to be made aware that computer hardware, software, license fees, updates, backup systems, networking, adherence to privacy policies, input to create the record and storing the record all cost money and the money comes out of the MD gross income
    If it’s a paper chart, the paper, files, pens cost money, the MD needs to rent enough office space to have space for a filing system, a secretary who can maintain a filing system and accurately keep track of files needs to be hired .. all of this costs money and comes out of the MDs gross income
    Maybe MDs need to charge each patient a yearly admin fee to cover these costs so that patients can get their records at no charge when they want them

    1. Great point, Pamela!

      Complaints about the cost of photocopying irk me, too. You spelled out the issue very clearly. The irony is that most requests for copies of blood work come from the naturopaths who had the patient ask for it to be done in the ‘free’ medicare system. (I know, I shouldn’t do the tests. I only do them if I can make an argument for why they’re needed beyond ‘because my Naturopath says I need them.’)

      Thanks for your comment!

      Cheers

      Shawn

  4. Thanks for re-posting this blog for discussion Shawn.
    I apologize in advance but I could not restrain myself from commenting.

    Yes, of course, Steve Paikin is right. Our Health Care System should be, is supposed to be, patient focused and patient centric and ultimately the Health Care System should exist to provide services and care to the patient above all else. The concept of patient centred care has been kicking around for a really long time now but I don’t think we are any further ahead in achieving this goal.

    The very nature of our current health system is that we are a collection of siloed special interest groups each trying to to do the best for ourselves. It is not that individual physicians, nurses, other front line providers and yes, even bureaucrats, are evil, or self serving or disinterested in good patient care. It is that we are all caught in a massive, inexorable machine has a mind of its own and it and for most of us, it leaves little room for simple luxuries like patient centred care.

    Universal healthcare is a brilliant and laudable concept.
    However, it has been presented to all Canadians for decades throughout the entire nation as being FREE, UNLIMITED IN SUPPLY, to be used with impunity not just for healthcare but at their convenience, and as an inalienable right regardless of cost or inconvenience to the system and to providers. Politicians of all stripes have been complicit in maintaining this fallacy for years and continue to try to do so today even as our system is falling apart in front of our eyes.

    As Mr. Paikin rightly points out, all of these special interest groups should be ideally looking out for the patient. The reason we cannot concentrate on patient centred care is because we are all too busy simply trying to survive ourselves within the system. They system is failing and we are all jockeying for the best position so that we get the best of the remaining pie crumbs.

    In order to sustain the system, we need to think outside of the system. We need to be thinking of hybrid care; we need to look at health care in other jurisdictions (other than the US). In a system that was properly funded and resourced, AND PROPERLY UTILIZED, it would be significantly easier to cooperate, to collaborate, to integrate our systems and to go above and beyond to ensure proper care that is truly patient centred. Things are always easier when you are not fighting your teammates.

    There SHOULD be a “patient special interest group”. This should NOT be yet another assistant deputy minister of health (don’t we have enough of those??), as this will add yet another bureaucratic department. A true patient special interest group should be grass roots sourced and operated but funded by the MOH.

    With respect to Gerry’s comment and others, if I worked in an institution where I was not paying the bills for the staff and overhead, I would be GLAD to provide copies of all records to all patients. The ridiculousness of this situation is that out of our OHIP fees, we are paying for the infrastructure of healthcare (i.e. staff, office etc.) and then we are expected to provide additional services that are not health care related and that are not remunerated. This is not a case of stakeholders acting as if the “system” was theirs but rightfully acting as if the office, its equipment and the staff that they paid for is indeed theirs.

    1. Wow, Ken, you wrote another barn-burner! Simply awesome. I sure hope people read through and digest this.

      I especially liked these comments:

      People see the system “to be used with impunity not just for healthcare but at their convenience, and as an inalienable right regardless of cost or inconvenience to the system and to providers.”

      “…we are all jockeying for the best position so that we get the best of the remaining pie crumbs.”

      But you really nailed it with this:

      “The ridiculousness of this situation is that out of our OHIP fees, we are paying for the infrastructure of healthcare (i.e. staff, office etc.) and then we are expected to provide additional services that are not health care related and that are not remunerated. This is not a case of stakeholders acting as if the “system” was theirs but rightfully acting as if the office, its equipment and the staff that they paid for is indeed theirs.” Ridiculous indeed! And almost no one gets it.

      Thank you so much for reading and commenting. We need more people getting this message out.

      Best regards,

      Shawn

  5. It`s interesting that Mr. Paikin is talking about this issue at this time.
    I sat on the CMA Healthcare Transformation Working Group in 2012 and we recommended, as a fundamental principle, a Patient Charter of Health Care Rights. At that time Canada ranked 29/30 for value for healthcare dollars spent when compared to the US and OECD countries.

    The OECD countries, all ahead of Canada, allowed their citizens the opportunity to purchase alternative private health care insurance plans that would pay physicians and hospitals for care if the publically funded health care system could not do so in a timely manner.

    Competition breeds quality.

    The majority of these countries also had patient charters of some description.
    The CMA attempt at a Patient Charter did not bear fruit and the document languishes at the CMA and was not taken seriously by the Conservative Government of the day.

    Basically it is now merely a “principles” document with no teeth. It does remain however a very well thought out document and I believe that if it were ever accepted and implemented that it should have the same legislative overview as the Human Rights Code so that if a hospital or agency disrespected the Charter a lawsuit could follow.

    Fear breeds improvement.

    https://www.cma.ca/Assets/assets-library/document/en/advocacy/policy-research/CMA_Policy_Health_Care_Transformation_in_Canada_Change_that_Works_Care_that_Lasts_PD10-05-e.pdf#search=patient%20charter

    As an addendum:- one of the principles that I would want in that Charter is the right for an individual to choose to purchase private insurance to pay for physician and hospital care and the right for the hospital and physician to provide and be paid for that care (which currently is illegal in Canada).

    It seems more than ironic that in February 2016, legislation will be passed granting the patient/individual the right to assisted suicide, whilst my rights to protect my health and life (and my families`) by purchasing private insurance, together with the rights of physicians and hospitals to provide such care, (other than in a publicly funded system), do not exist, are not allowable in this country and fly in the face canadians human rights.

    1. Great to hear from you, John, and with such outstanding commentary! Brilliant!

      I did not remember the CMA patient charter. I will ask around and see if it can be revived.

      I agree with everything you’ve said. It is very ironic how so many social justice warriors throw open their arms to legislation for death based on freedom and rights but scream bloody murder at any hint of argument for health based on freedom or rights.

      Thanks so much for sharing this – with links, no less!

      I trust you are doing well with more time for these things.

      Warm regards,

      Shawn

    2. Thank you for this excellent comment and the reference.

      “…the right for an individual to choose to purchase private insurance to pay for physician and hospital care…”

      I cannot think of any other legal good or service where a citizen who is willing to pay for it is prohibited by law from doing so.

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