Deconfusing Healthcare through Taxonomy Inquiry

This winter,  I had an opportunity to participate in an information research team that had a chance to interview top executives in health care in Massachusetts.  This included the CEOs of insurance companies,  regulators from the Attorney General’s office, and medical directors of major medical networks and hospitals.   The goal of this project was to understand one term  “Cost Containment”   — what are the drivers for rising health care costs and what can be done to slow the rate of growth.

When someone with taxonomy skills participates in these types of investigations, it is hard not to put those taxonomy skills to work. What did I learn from this process that might be applicable to best practice and to understanding health care cost containment?

1) Start with a  simple but important question  as a guide for developing deeper knowledge

This group started with the question  “What is cost containment?”   It is a fairly fundamental question since we in Massachusetts are fortunate to have universal coverage (about 97%)  but there is a need to control costs.  By asking this fundamental question. the group could  collect basic facts from each key player on the same topic   to understand how proposed strategies are defined from the point of view of key players who are shaping policy.

2) Get to know the cast of characters

Remember the adage that the key to a baseball game is to know the players and the same applies to understanding a complex issue. We need to  who the users are, what brought them to these meetings,  It is critical to  identify the constituencies in healthcare, all of whom have different goals in any situation.   The key actors we indentified were:

  • Insurers (also known as Payers)
  • Providers (Hospitals, Doctors, Specialists)
  • Regulators (government, legislature, attorney general)
  • Consumers (includes business owners, patients, local government)
  • Purchasing agents (people who buy insurance for large groups — government, business, insurance agents)
The above list is a top level of the Actors/Player facet which further breakdowns.  Insurers for example is further categorized into companies, corporate structure (profit/non-profit), market share.    Not all the groups under these broad headings share characteristics.  For examples, we rarely saw a “specialist” at  a meeting on cost containment, but other types of medical personnel including primary care, psychiatrists, behavior medicine, were well represented because they, as a group, lower reimbursement and higher volume than specialists.  Grouping does not mean all values are inherited  — thus the need for understanding power relationships and attributes.

3) Understand the power relationships

Some actors have more power and are core to the discussion.  Insurers and providers have a closer affinity for example, while consumers, including employees,  business and local government entities tend to have less to no power in these relationships.  Hospitals and specialists have more power than primary care and behavioral medicine.  Understanding these internecine wars within health care is a key analysis for understanding core relationships and who is outlying.  The health care debate is in part about how to give outliers more power and equity in the health care process. The most outlying of all voices is patients and consumers.  Theoretically,  in new models of health care, their voice is supposed to be represented by larger purchasing pools who can negotiate for better service at less cost.

4) Identify  the key cost drivers —  Isolate the attributes 

The hardest part of this work is to isolate the variables/attributes  or cost drivers, and understand how each group contributes to improving these practices.  These are topics that should be of mutual concern but that are  not universally understood and standardized.  Examples of cost drivers included:

  • Use of and dissemination of best practices (end-of-life care, chronic diseases)
  • Use of Technology
  • Number  and Variety of Insurance Plans
  • Cost of drugs
  • Reimbursement rates
  • Risk Management (use of defensive medicine, malpractice, high-risk pools)

Each of these attributes needed to be further understood from perspective of the key players to understand how it contributes to cost.  For example, Massachusetts has an excellent universal health care law, where consumers can choose from about 18 different plans over the Connector, but in addition, there are additional public, private and individual plans resulting in over 16,000 different plans.   Some cost containment could be achieved by having a “shared minimal contract” that is at a high standard of care, and captures essence of basic wellness.  To do this, the players and consumers need to find the common language for describing conditions and coverage.

5) Capture the AS IS Definitions.

Since these conditions and coverage are not standardized,  it is useful to understand what the current status is.   Understanding AS IS definitions help to capture the many disconnects between group. For example, while consumers argue about cost of deductibles, insurance companies might spend more money in order to reduce high cost of hospitalization.  Result is like a balloon filled with water — one end gets leaner, while more pressure is put on another end of the balloon — the consumer.    Capturing the cacophony, instead of the symphony, turned out to be the most valuable part of the work. We discovered we did not have to reach common understanding, which meant trying to capture the current status and its impacts.

6) Read background content

In addition to understand the “cast and drivers”  it is also important to read studies and literature to keep a broad and balance perspective. Being in rooms with charming and knowledgeable power players can be quite intoxicating, but to keep it honest, we needed to keep reading and we needed to ask honest questions about what was the advantage for each player in their advocacy for a certain program.   Spending a few hours each week on literature reviews, books, articles, podcasts on general health care was very important to building our group and individual knowledge base and developing our facility in the terminology of health care economics.  We used reading to define comparative health care models in other countries (Taiwan, Switzerland, Japan, Canada, Germany, UK, France, and US) and to understand multiple models of healthcare delivery.

7) Capture concepts in simple diagrams

Even within our small, random  data collection group, there were divisions in understanding can be quite diverse.  Using simple diagrams to capture concepts  turned out to be powerful shared way to come to common understanding.  Bubble mapping, graphing, hierarchical diagrams, any visual graph was useful to clarify information.

8)  If any term is hard to explain with a simple sentence, it probably deserves a taxonomy

“Cost containment”  is not trivial,  but it is also important to understand. And it is almost  impossible to explain without learning something about healthcare system.   It is worthy of the time and effort to create a taxonomy to define the information space or information void, and a void is filled by misunderstanding or misinformation.

Developing a consumer-focussed taxonomy for navigating health care  turns out to be valuable work, but it is hard to sustain without a dedicated team with and sustained funding.  A consumer-focused taxonomy would help  navigate the health care debate, can be used across all actors, including   insurers, providers, governmental entities  and consumers who want to share information with a confused but curious public.

~ Marlene Rockmore

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Using Taxonomies to Sort through Health Care Reform

I am very interested in the health care reform debate, thus I wanted to know what a public option might look like. I was told by my sources that a robust public option might look a bit like Medicare. So off I went to the Medicare.gov website to find out what was covered.   In the middle of the home page in the second column, there is  a link to ‘Find Out What is Covered, ” which leads to an advanced search criteria page. The search page  includes picklist of about 143 topics,  just the right size for a sample set of candidate terms  for a card sort.

This month, I am offering a small interactive experiment in online card sorting.   Taxonomies are collections of facets, which are created by organizing concepts into categories.  Card sorting is one of the best ways to identify categories by having controlled tests with groups of users to create categories, that can be validated through repeated tests, until there a consensus.  In health care reform, taxonomies might be useful to help create consumer-friendly interfaces to help search across the national insurance exchanges.

A card sort method uses the following steps:

  • Collect a sample set of candidate concepts
  • Group or cluster terms into categories
  • Refine the design iteratively until there is a set of facets, groups of categories that have similar properties

I’ve put 130+  topics from Medicare into an online card sorting tool called Websort.net.  The topics have not been formatted or massaged; they are just as they appear the Medicare search picklist.   Websort.net suggests  that I use a closed card sort,  where participants sort terms into predetermined categories. So to get  started,   I’ve come up with about 20 starter categories.   Some of these categories will become subtopics in a faceted design

The experiment is open to the first 10 participants who want to take the time to try this task.   To try the card sort, link to

http://websort.net/s/80CDD6/

Please feel free to assign terms to multiple categories or to suggest other categories.

Last month, Joseph Busch blogged about the judicious use of online web sorting tools – that they may not be the most cost-effective way to build taxonomies. One of his arguments is that the sample set of users will not be random. That’s true. This blog has a small readership who have interest in taxonomies, and probably have a consumer’s interest in health care reform. Let me know what you think of websort.net.

This little experiment could help demonstrate some bigger observations. Government may be looking to advanced high volumentechnologies such as clustering or semantic technologies to identify categories and to map claims data.   Perhaps one of the applications will be  to build interfaces that will help consumers search across the national exchanges.  But at the core of these technologies, there will be a need for well-designed taxonomies to help analyze text and building better interfaces to access health care information.

A well-designed taxonomy with facets and linking relationships can

  • Group information into useful categories
  • Identify gaps in coverage
  • Help point to important related information

Let’s find out if taxonomy design can help us sort through health care reform.

Thanks to Andy Oram and the Sunlight Foundation for introducing me to this tool and to Dave Cooksey who is virtually updating my card-sorting skills.

Is Taxonomy Dead?

Recently, Theresa Regli announced in a CMS Watch about predictions for 2009 that taxonomy is dead, and that metadata was the future. The argument for death sentence is that taxonomies are viewed as too authoritarian, that it might be possible to auto-generate topics and concepts through computer processes and finally, that the work of taxonomists is to police vocabulary, and not to invite a multiple views of information. So let’s examine this assumption.   So let’s confront a challenging information problem like health care insurance information systems. 

To begin, let’s take a look at some of the heavily-used consumer websites for health care information such as Medicare website (www.medicare.gov) and the widely-touted Massachusetts Health Care Program. In each system, take the challenge what you can find out about benefits for specific conditions like type of cancer, asthma or allergies. Try to figure out what coverage is for routine office visits.

What you will notice is that both Medicare and the Massachusetts State public-facing information sources are hard to search.

Medicare Home Page with Search Tools

Medicare Home Page with Search Tools

Buried in Medicare under “Search Tools – Find Out What Medicare Covers“ and under “Find Out What Medicare Covers” is a picklist of about 150 alphabetically-arranged terms. A picklist is not  a taxonomy.  Let’s see what the picklist offers:

  • · Multiple terms for Wheelchairs and Powered Operated Vehicles (POVS) and Motorized Wheelchairs, which are POVs.   There are also multiple synonymous terms for Office Visit
  • · No overarching concept for “Equipment.
  • One term for all Surgical Services, but no specificity of terms by Surgical Specialty. That might lead to an assumption that all surgical services are covered.
  • Important concepts are missing. There is no entry for “Asthma” or “Psoriasis” or “Dermatology or many other common complaints or hundreds of procedures.
  • Multiple terms for Lab tests and Diagnostic Procedures with no overarching category and none of these terms are linked to standard medical coding systems.
  • Over time, it’s difficult to scroll through hundreds of unorganized terms
  • Picklists are not compatible with web accessibility needs, particularly important for the audience of health care (or any) website.

One of the problems is that taxonomists have NOT been involved in solving these serious information problems. What would a taxonomist do? Taxonomists help design other ways that users, such as consumers, patients, caretakers, advocates, doctors, insurance companies, and policy analysts look for information. They group terms in meaningful categories based on proven methodologies that are used to analyze predictable categories of knowledge. Taxonomists perform gap analysis to identify missing concepts. Some taxonomists work with auto-classification and ontological tools to develop rules and semantic models.

Wouldn’t it be useful to have a health care information system that look at care based on a various levels of modeling such as ”point of need” such as Routine Care, Non-Routine Care, Emergency Care, Rehabiliation and Restorative Care, Chronic Care (including preexisting conditions), and Life-Threatening and Palliative Care. At the lower, concrete levels, this taxonomy would connect to the detailed services, which could then be connected to cost control data.

Look at www.cancer.gov, while not providing health care insurance benefits, at least promotes finding information by type of cancer. http://www.Cancer.gov has a taxonomy that is faceted in that it is organized by types of cancer. Here is a good example of taxonomy at work and an example of what taxonomy can do to help make these interfaces simpler and more friendly to its audience.

I am a fan of faceted taxonomies, but now I am of the belief that simply categorizing a term to a canonical form might be sufficient, because it captures the context of the term in one moment in time. But as many as 80% categories of knowledge are predictable based on our shared knowledge and can be suggested as part of the web interface design process.   But taxonomies also need to friendly to user terminology.  Who cares if an office visit to the doctor is called “Wellness Visit” “Routine Visit”  or “A day at the beach” as long as the terms link back to the same basic concept.

Is taxonomy dead. Old style authoritarian taxonomies are gone, but taxonomies as capturing models of how we think are very much alive and very necessary to improve public access to important information. Words matter. Long live taxonomy!

A pdf version of this article will be available on website  http://www.SynecdocheConsulting.com