The Engaged Patient

While on my travels back to Canada I found the editorial page that I removed from the Globe and Mail from March 5.  The editorial was entitled the “engaged patient”. 

Maybe the editor from the Globe is a reader of Making Medical Lab Quality Relevant because I have been on this theme for the last while.

One of the adages from our Quality Management course is that of all the Quality Partners, the singlemost important driver of quality is the Public, because once the public is engaged, politicians have to listen.  We may not necessarily like what happens next, but at that point it probably is fair to say that whatever happens, we brought in on ourselves.  

 I think the choice of words for the title of the editorial, the engaged patient, was interesting.  By the change of one letter it becomes the enraged patient, and all to often one leads to the other rather quickly. 

If I have issue with the editorial, it is the choice of the issues that they highlight; parking spots, and hospital food, and of course wait times.  If these are what most Canadians are complaining about, then we are running a pretty good medical program.  Or they are even  more in the dark than I imagine.

There are some real issues and the laboratory is often front and centre because that is where most of the diagnostic information comes from.  

For years we have bemoaned the quality and interpretability of our reports.  We have blamed the absence of simple and plain language on the Laboratory Information System (LIS) software.  If that is the case then it is time that we do something about it.  Creating reports that many physicians can’t understand is intolerable.  Providing these reports to patients is inexcusable.  

Providing tests that are fast and easy to perform, but which are insensitive and non-specific is not acceptable.  Many of the rapid tests are about 90 percent sensitive and have a specificity at about the same level  Sounds good, but when these tests are routinely overused on patients with a low likelihood of having disease, the value of the test drops down to about the same as a flip of a coin.

 

When we allow laboratories to hide their incompetence by “cheating” on their quality assessment testing, or when accreditation assessments are a 2 hour visit rather than a real inspection, confidence in their performance would drop if patients and physicians were to find out.

And we have already seen what happens when breast and other cancer testing is not done with precision.

 

Going back to the editorial, one of the solutions that is correctly identified is COMMUNICATION.  And they are right ... almost.  I was amused when they suggest that medical organizations should be at least as good at giving information as the airline companies.  “When a plane is late, passengers are told why”.  Give me a break.  One thing you can say with almost total certainty is that the airplane information is more about mushroom farming than information sharing; you cover the mushrooms with dung and keep them in the dark.

But communication is a key answer.  Get the well informed patient advocate groups engaged now.  They will help use get rid of the “fast and easy and wrong” tests, and take Quality seriously.  And we will learn to how to use plain language.

 

Our future depends upon it.

Protecting our Consumers

At a recent meeting I learned about an international organization whose primary mandate is to protect the rights of consumers of products and services.  While new to me, it is not a new organization.  It is called the International Organization for Standardization’s Committee on Consumer Policy or ISO COPOLCO.

It would not surprise me if this committee is new to most people.  Even Google has problems with a keyword search “consumer policy committee”.  And if you do go the effort to find it, as with all other ISO standards, your only chance to read one of their documents is if you buy it for 86 Swiss francs. 

What both interests and surprises me is that I have been in and around ISO since 1995 (you might call me an ISO insider) and that I have not been aware of COPOLCO until just now.  It would seem that they intentionally keep themselves to a very low profile, which I do not understand. 

But I think it may be worth going the extra distance to find out more by going to the ISO site (www.iso.org) and entering the term COPOLCO.

In 1978 the International Organization for Standardization (ISO) developed a committee known as ISO COPOLCO – the Committee on Consumer Policy.  The committee is designed to create the opportunities that will help consumers benefit from standards and importantly to provide a forum that allows consumer groups to become engaged in the broad aspects of standards development.  

Its mandate is to protect consumer fundamental rights which include:

• The right to safety
• The right to be informed
• The right to choose
• The right to be heard
• The right to satisfaction of basic needs
• The right to redress
• The right to education
• The right to a healthy environment
• The right to sustainable consumption

These fundamental rights have been recognized by the United Nations since 1985.  Towards their goal to protect these rights, COPOLCO writes standards and guidelines within the ISO infrastructure and process which address packaging and symbols and instructions on packages to make them more consumer-friendly.  Fortunately COPOLCO does not work completely in anonymity; they do work with other committees with ISO. 

I note with interest that ISO uses both the word “fundamentals” and also the word “rights”.  In Canada we have certain rights protected by our federal Charter of Rights and Freedoms.   I suspect that an argument could be given that the consumer rights might be protected under Article 7 (security of the person).

I am intrigued by COPOLCO for all sorts of obvious reasons.  The first is that standards and Quality do not exist in a vacuum.  They exist to assist organizations improve in order to ensure the health of the organization and the benefit to their customers. If you start from Phillip Crosby, the definition of Quality is meeting customer requirements.

Significantly, our technical committee on medical laboratory quality does not work directly with COPLCO or indeed any consumer representative.  I think that is a shame because medical laboratories have customers and our customers have needs and expectations.  Clinicians that seek our services need to know that we will provide timely accurate relevant and interpretable information, and patients need to understand that we will not do them harm in the process of testing, and the community needs to know that we can ensure that our reagents will not be released in a way that could cause jeopardy to the environment or the community that exists around the laboratory.  And the community needs the assurance that we will share information vital to the health of the community without interfering with the confidentiality of individuals.  

As I look at the fundamental rights put forth by COPOLCO, I can see where some of them fit directly with what we need to consider.  Issues such as protection of personal safety and that the right to be informed make a lot of sense, as does the right to be heard, especially if there are concerns and complaints.  As we move more towards direct-to-patient reporting our obligation to provide an education service becomes more obvious as a benefit for both the patient and to the laboratory.  And with respect to the fundamental right to a healthy environment, I have visited too many laboratories that regularly flush reagents down common drains and put samples in common refuse that put the environment and community to risk. 

So I say congratulations to ISO in recognizing and acknowledging the importance of consumers in the Quality equation.  Giving a voice to the users of our services is NEVER a bad thing.

Now if only they can do some thing about their ultra-low profile