AlignMap

Epiphany Du Jour – Training To Be An Effective Patient That Begins Post-Diagnosis Begins Too Late¹

Question #1: What is the likelihood that an individual reaching  adulthood in the US will eventually find himself or herself in the role of a patient?
Answer #1: Almost certain, according to my calculations.²

Question #2: When and how does one typically learn to how to operate effectively in the patient role?
Answer #2: While  learning to operate in the patient role theoretically takes place whenever one visits a clinician for any reason, that process, which could charitably be called “learning by doing,” is a hit or miss affair that routinely receives little attention until one is concerned about the possibility of or diagnosed with an anxiety-provoking disorder.³

Question #3: What is the worst possible way and the worst possible time to learn to operate effectively in the patient role?
Answer #3: See Answer #2.

A Illustrative Scenario

Consider this example: An asymptomatic,  intelligent 34 year old woman with only minor interactions previously with organized medicine is diagnosed with breast cancer during a routine exam.  Her doctor informs her (accurately) that any delay in treatment increases her risk. She is immediately faced with the decision of whether or not to follow the primary recommendation for surgical intervention and, if she agrees, which of the 2-4 possible procedures she wishes.  If she declines  the surgical procedures, she must decide which, if any, of the alternative treatments she will undergo. She also has to deal with the impact the diagnosis and treatment will have on her spouse, her children,  her job, her friends, and her extended family.

This is, I submit, a suboptimal situation for learning to be an effective patient, the intensity of ones motivation notwithstanding.

The Solution – Teaching How To Be An Effective Patient In The K-12 Curriculum

An explicit goal of elementary, middle, and high schools is preparing children to undertake  adult tasks. Thus, in addition to  learning basic math, writing methodology, and reading comprehension, students also take courses in sex  education, nutrition, consumer skills, and managing relationships.

Learning the skills necessary to be an effective patient, such as what to expect from, how to communicate with, and when to seek help from healthcare professionals, how to understand medical reports, pharmaceutical ads, and other pertinent printed and online literature, … , is at least as important as learning about the risks of unprotected sex or the need to save a portion of ones paycheck against future needs.

Making “How To Be An Effective Patient”  part of the K-12 school Health curriculum is no panacea, but it seems a rational and promising alternative that is likely to substantially improve the current “just too late” methodology.⁴

Credit Due Department: The photo portrait atop this post was taken by Bhernandez. The schoolroom photo was taken by Rob Shenk

1. Author’s Note: Patient Effectiveness Training is part and parcel of the system I (ambiguously) envision as a replacement for the current, non-functioning patient compliance model. The focus of this piece, that such training should take be part of the public education curriculum, is, admittedly, a tangent, and I am willing to stipulate that I am devoting a post to the notion less because of its impact on treatment adherence rates (although that impact could be significant) than because I think it’s a clever, useful idea. … and, it’s my blog.↩
2. Almost all of us who make it to adulthood in the US (or Canada or Britain or Germany or Scandinavia, …) will sooner or later be a patient. The exceptions are at most a tiny fraction of the population: those who consciously and conscientiously  avoid doctors because of reasoned principles, irrational fears, religious beliefs, cultural mores, or psychological disorders and also manage to avoid membership in organizations such as the armed forces that insist on involvement by clinicians and remain  healthy enough that they are not forced into healthcare (e.g., taken in an unconscious state secondary to a cardiovascular accident  into an emergency department) until they die.↩
3. In addition, there are educational processes that are even more sporadic and variable in quality: individuals may, for example, read articles about “how to be a good patient,” attend a workshop at the local hospital about “how to communicate with your doctor,” or receive information through various ad campaigns recommending that viewers ask their doctor about using one or another medication.↩
4. This is one of those ideas that seems so obvious that one assumes it is being done already. And maybe it is, but I can’t find any discussion of it.↩

It’s Magic! “Resolution 710 – Identifying Abusive, Hostile Or Non-Compliant Patients” Changed To Procedural Code Issue

OK – Resolution 710, proposed at the 2009 Annual Meeting of the American Medical Association,¹ was always technically a procedural coding issue. Heck, it’s not even an unusual sort of procedural coding issue.

The Non-Compliant Patient Coding Resolution Isn’t Quite As Bad As Some Folks Are Making  It Out To Be

The Resolution would have caused certain data to be collected in order to formulate new modifier and/or add-on  Current Procedural Terminology codes² to identify services provided for “Abusive, Hostile Or Non-Compliant Patients.”

Those modifier and/or add-on CPT codes could have two possible consequences:

1. Clinicians could use the new codes to modify their usual charges for a treatment because of the special circumstances (i.e., that the patients being served are “Abusive, Hostile Or Non-Compliant”).

This is nothing new or nefarious. Psychiatrists, for example, may charge different rates for 30 minutes of psychotherapy, depending on the setting and whether medical evaluations are included:

• Psychotherapy, 20-30 minutes; office/outpatient setting (CPT 90804)
• Psychotherapy, 20-30 minutes; office/outpatient setting with medical evaluations and management services (CPT 90805)
• Psychotherapy, 20-30 minutes; inpatient hospital, partial hospitalization or residential care setting (CPT 90816)
• Psychotherapy, inpatient hospital, partial hospitalization or residential care setting with medical evaluations and management services (CPT 90817).³
  

And, surgeons may legitimately charge more for an operation if there factors present which require substantially more work.

For example, because no CPT code exists for a revision of an arthroscopic anterior cruciate ligament (ACL) reconstruction, a physician may report CPT code 29888 (arthroscopically aided anterior cruciate ligament repair/augmentation or reconstruction) with a modifier 22. The documentation must support substantially greater work for the revision, such as increased time and technical difficulty associated with approach through adhesions/scar tissue, removal of hardware, or tendon grafting. In box 19 on the claim form, add a note that the modifier 22 supports a revision ACL with increased complexity.⁴

Resolution 710 could conceivably have led to modifier codes associated with higher compensation based on the altogether credible notion that providing some direct clinical services for “Abusive, Hostile Or Non-Compliant Patients” is more difficult than providing those same services for patients who are cooperative.⁵

It’s a bit like United Airlines charging extra for passengers too overweight to fit comfortably into an airplane seat. It may not be compassionate or humanitarian, but it can be justified on an economic basis. (It’s also worth noting that the existence of a CPT code or modifier does not mean an insurer, government agency, or individual patient will automatically honor it by paying higher fees.)

2. The new codes could lessen the impact of negative outomes on a clinician’s performance record.

Even more important than the money, however, is the concern that patients in these categories could make their physicians look bad.  This is, at least from my own hypervigilant perspective, an understandable concern. With everyone from the government to third party payors to consumer groups to rate-your-doc web sites collecting data on clinical performance, it’s easy to see how someone in the healing professions would worry about a treatment failure showing up on his or her record, not because of an error in prescribing treatment but because the patient didn’t follow instructions.

But The Non-Compliant Patient Coding Resolution Is Still Pretty Bad

First, I would have lots of questions about how “Non-Compliant Patient” would be defined, given that I have yet to find an acceptable all-encompassing definition of the term. Is anyone who misses an appointment non-compliant?  How about missing six of the last eleven appointments?⁶

Come to think of it, I’m not sure I can come up with a functional definition of “Abusive Patient” or “Hostile Patient” either.

But even as fundamental an issue as how one identifies these patients is, I suggest, secondary to the real problem.

The Real Problem – Nasty, Insulting Language

The real problem is the language and tone of the Resolution. The significant text of Resolution 710 begins

Whereas, Many patients are becoming more abusive and hostile toward physicians for many reasons not limited to the economy, increasing co-pays and deductibles, unreasonable expectations and demands, a lack of instantaneous cure, arrogance and/or the belief that they “own” their physicians;

As I noted in an earlier post, it really doesn’t get much better after that.

While I did not expect a ringing denunciation of this insulting-to-patients, embarrassing-to-doctors Resolution, I had thought it possible that a delegate would comment on the implicit message (you know, the one about “we hate patients”) conveyed by the document as presented, perhaps using filtering the criticism through the classic code so that it becomes, “The way it’s written now, it could be misinterpreted by others as insulting to patients even though I am sure Dr. Jones, who authored this Resolution, cares deeply for all his patients.”

Nope, Reference Committee G opted to mumble something about “concerns in labeling patients” and then  pass the problem to somebody else by implementing the classic technicality ploy – This isn’t my problem – this is his problem.

Here’s what happened, as excerpted from Report of Reference Committee G

RESOLUTION 710 – IDENTIFYING ABUSIVE, HOSTILE OR NON-COMPLIANT PATIENTS

Mr. Speaker, your Reference Committee recommends that Resolutions 710 not be adopted.

Resolution 710 asks that our AMA ask its CPT Editorial Panel to investigate for data collection and report back at Annual 2010 meeting:

1) developing a modifier for the E&M codes to identify non-compliant patients and/or
2) develop an add-on code to E&M codes to identify non-compliant patients.

Your Reference Committee heard limited supportive testimony on Resolution 710. The author stated that the intent of this resolution is to identify non-compliant patients, especially as there is an increasing focus on physician performance and releasing of physician data. Testimony was empathetic to the difficulty in working with non-compliant patients, but expressed concerns in labeling patients and acknowledged a desire to be sensitive to the possible mental health issues of non-compliant patients.

Testimony provided by the CPT Editorial Board stated that the appropriate forum for addressing CPT issues is through the CPT Editorial Panel process, not the House of Delegates. In addition, while there are no codes that exist to identify someone as specifically non-compliant, there are existing modifiers to identify patients who do not comply. For example, Modifier 2P (Performance Measure Exclusion Modifier Due to Patient Reasons) is available to report non-compliant patients. The list of reasons for Modifier 2P include (1) “patient declined”, (2) “economic, social, or religious reasons”, and (3) “other patient reasons”. This modifier is intended to be used with performance measure Category II codes. CPT Category II Performance Measurement codes are intended to facilitate data collection about the quality of care rendered by coding certain services and test results that support nationally established performance measures and that have an evidence base as contributing to quality patient care. These codes describe clinical components that may be typically included in evaluation and management services or clinical services and, therefore, do not have a relative value associated with them. Given that there exists an appropriate avenue to code for non-compliant patients and that this issue should be directly addressed through the CPT Editorial Panel, your Reference Committee recommends that Resolution 710 not be adopted.

Got that?  My unofficial translation follows:

Everybody knows that there are some patients so difficult that they make their doctors (and nurses and physician assistants and respiratory therapists and … ) miserable and they are capable of screwing up their own treatment. Everybody sane knows you can’t go around calling these patients nasty names. Besides, some of them have psychiatric problems, and no one wants to open that bag of worms.

Besides, the Resolution is a CPT issue.  This is the House of Delegates, not  the CPT committee. We aren’t the ones to deal with new CPT codes. In any case, there are already some codes that address these issues; they just don’t use the term, “Non-Compliant Patient,” thank goodness.

So, let’s put an end to this foolishness right now.  If the people pushing this loser want to pursue it, they can take it up with the CPT Editorial Panel.

I think I understand why this went down as it did, and I’m sympathetic to the internal  political demands the AMA and most such institutions face.

And, the Resolution was, happily, not adopted, so that’s good.

I believe, however, the AMA missed an opportunity to make it clear that the language of Resolution 710 is aberrant and does not reflect the medical community’s characterization of patients.

1. For background, see AMA Resolution On Non-Compliant Patients – What’s Up With That?↩
2. CPT codes “describes medical, surgical, and diagnostic services and is designed to communicate uniform information about medical services and procedures among physicians, coders, patients, accreditation organizations, and payers for administrative, financial, and analytical purposes.” From Wikipedia↩
3. From Answers to Common Questions About New CPT Psychotherapy Codes↩
4. From Modifier changes for 2008↩
5. Of course, I suspect I could make an equally persuasive economic case for patients paying reduced rates if they have to deal with an abusive, hostile, or noncooperative doctor.↩
6. See  Patient Compliance – So Wrong For So Long for a list of hair-splitting examples that illustrate the problem of defining noncompliance.↩

In the preceding AlignMap post, AMA Resolution On Non-Compliant Patients – What’s Up With That?, I was critical of a proposed Resolution coming before the American Medical Association House Of Delegates bearing the subject line, “Identifying Abusive, Hostile or Non-Compliant Patients” and beginning

Whereas, Many patients are becoming more abusive and hostile toward physicians for many reasons not limited to the economy, increasing co-pays and deductibles, unreasonable expectations and demands, a lack of instantaneous cure, arrogance and/or the belief that they “own” their physicians;¹

And, it really doesn’t get much better after that.²

Seized this morning by an altogether atypical compulsion to be fair to the AMA,³ I found A Responsible Patient,⁴ an article by Swathi Arekapudi published in Virtual Mentor, which is published by the American Medical Association Journal Of Ethics.

This thoughtful piece addresses the term “non-compliant” in language parallel to that I used in Compliance Versus Adherence and Beyond – The War Of The Words, definitively establishing the wisdom of the author:⁵

The move from overt paternalism towards increased patient autonomy is illustrated by the change in the adjectives used by medical authorities over the course of a century to describe patients who do not follow medical advice. The terms evolved from the “vicious” and “ignorant” TB patients of the early 1900s, the “recalcitrant” after World War II, to the “non-compliant” patient that emerged in the 1970s. Ironically the term non-compliant, which was developed specifically to be a non-judgmental phrase, has been criticized for its implication that patients should necessarily follow physician recommendations. “Non-adherent” is suggested as a better term because its lacks the implication that patients must necessarily follow their physicians’ advice. No doubt this new term will face a slew of criticisms in time.

Even more pertinent to the AMA Resolution is the concluding section:

The modern patient-physician relationship is grounded in the autonomy of the patient and the need for the patient to make informed decisions. As we move away from the paternalism that formerly characterized patient-physician relationship, we see that active communication between the physician and the patient is invaluable in the patient’s informed decision making. The goal of a physician, namely to improve or maintain the health of his or her patients when possible, can be accomplished by increasing the number of patients who adhere to recommended therapy. Though collaboration and cooperation are necessary they do not necessarily put the physician and the patient on equal footing in terms of medical knowledge. But through a patient-physician relationship built on a mutual understanding of what is expected of the other, patients will be able to understand their role in their own health care. Though physicians can no longer “order” patients to follow medical instructions they must now educate patients about the medical consequences of accepting or refusing treatment. The best method for achieving the goal of patient health is open communication between physician and patient. Labeling a patient “difficult” or “non-compliant” will weaken the bond of communication between doctor and patient.

Being Fair

Despite the risk of losing my credibility as a blogger, I must admit that, while the language used and the ideas set forth in A Responsible Patient are especially well-constructed, they are otherwise far more representative of the professional literature, symposia, and AMA publications dealing with noncompliance I’ve read over the past 30-40 years than is the “Identifying Abusive, Hostile or Non-Compliant Patients” Resolution.

Further, all I know for certain about the AMA’s stance on this issue is that somebody in the Michigan delegation to the American Medical Association House Of Delegates thought this was a good idea and managed to get it to a vote of the House.

Even if, however, this embarrassment is voted down, I fear the publicity it has churned up will have negated much of the work the medical community has done in improving doctor-patient communication, the tone of which is reflected in A Responsible Patient.

This short article, well worth reading by clinicians and non-clinicians alike, is available without charge at A Responsible Patient.

1. The entire Resolution can be found at AMA Resolution On Non-Compliant Patients – What’s Up With That?↩
2. I was hoping the final paragraph would be something along the lines of “Fooled you. You’ve been punk’d.”↩
3. Full disclosure: I once belonged to the AMA. I can’t find my records, but my most recent payment of AMA dues was at least 10 years and probably closer to 20 years ago.↩
4. A Responsible Patient by Swathi Arekapudi. Virtual Mentor. April 2003, Volume 5, Number 4.↩
5. I’ve omitted references from the following  excerpts. Those footnotes are, of course, available in the original article that is available online.↩

Alignmap In Cites Goes Video

A plethora of compliance-pertinent videos are now available online.  I’ve begun posting some of these flicks on this blog’s tumblelog counterpart, AlignMap In Cites.

Videos selected for the AlignMap In Cites Patient Compliance Theater meet one or more of the following inclusion criteria:

1. Presentations of patient compliance research that briefly and clearly present highlights of findings
2. Tips targeted to patients or clinicians that may improve adherence
3. Demonstrations of and infomercials about devices that ostensibly enhance adherence – or at least amuse me.
4. Testimonials from patients and pontifications from clinicians that provide useful information, reveal pertinent attitudes that could have a positive or negative impact on patient compliance, or surpass a difficult to articulate but easy to recognize threshold of – oh, let’s call it eccentricity.
5. Anything else that strikes my fancy.

The following videos in the list that follows have been posted to AlignMap In Cites in the past 24 hours. The links below go directly and only to the post indicated. These posts can also be accessed en masse by going to the AlignMap In Cites home page and scrolling back through the chronologically listed posts.

Now Showing
The AlignMap In Cites Patient Compliance Theater

Infomercial about the e-Pill Cube Pill Timer and Pillbox My first impression, based on the rather complex explanation of its operation, is that the device might be better positioned as a test of cognition rather than a convenient medication dose reminder.

Tips to enhance adherence to medication regimen Nothing unusual but potentially helpful ideas about remembering to take ones medications. Targeted to patients.

Medication compliance survey: Moderately self-serving presentation and recommendations from The National Community Pharmacists Association.

Infomercial about the e-Pill MD2 dispenser

Psych Medication Non-compliance: A patient’s own story of medication noncompliance.

Adherence to ARVs — Part 1 and Adherence to ARVs — Part 2: Poignant patient educational video from Baragwanath Hospital, Soweto, South Africa  promoting adherence to anti-HIV ARV drugs.

How to Improve Patient Compliance in Dyslipidemia Diagnosis: Medscape produced video report on study affirming value of electronic patient reminders.

Importance of Patient Compliance in Healing: Presented by a clinician and targeted to patients. Excerpt: So, do what the doctor tells you. Try to be compliant. Try to get better. And if you need our help, we’re Baker Chiropractic. We put patients first.

The Safety Issue and The Personal Medication Record

While my recent posts on the Personal Medication Record focused on its utility as a tool to decrease unintentional noncompliance,¹ the medication list also serves as an important safety function, as explained in What Medications Does Your Patient Take? Enhancing Medication Safety in the Outpatient Setting, an article published on the Institute for Healthcare Improvement web site.

I’ve included some excerpts to give a flavor of the essay:

Additional Sources

The Massachusetts Coalition has developed materials closely related to What Medications Does Your Patient Take? Enhancing Medication Safety in the Outpatient Setting. These include letters to patients, providers, and pharmacists to give patients and families useful tips for using medications wisely, and to inform providers and pharmacists about specific actions required to ensure patient health and medication safety:

Med List Letter to Patients
Med List Letter to Providers
Med List Letter to Pharmacists

Footnotes

1. The Alignmap posts dealing with Personal Medication Record include
   • Everyone Needs A Personal Medication Record
   • Choosing The Right Personal Medication Record
   • Compiling The Personal Medication Record
   • How To Create and Use A Personal Medication Record
   • Test-Driving The Personal Medication Record

   ↩

A preceding posting, How To Create and Use A Personal Medication Record, noted that (1) everybody, regardless of age and health, needs an individual Personal Medication Record that includes at least basic information about current medications and is always available to that person and those treating him or her and (2) several choices of Personal Medication Records (PMR) are available. Today, the focus is on the means by which you can audition the formats to determine how well a given PMR fits your needs.

In my research for these posts on the PMR, I discovered far too many offerings to provide viewers with even a representative sampling, let alone an exhaustive review. I also discovered, however, that there are a few telltale signals that provide valuable insight into the design of the PMR and its potential fit with the user.

To maintain accessibility to this essay, it occupies its own page within the AlignMap web site, where it can now be read at

The Personal Medication Record – Part IV

Although this is the fourth and final AlignMap post focusing on the Personal Medication Record¹ (PMR) as an important method of decreasing unintentional medication noncompliance (i.e., errors in taking medication),² it summarizes the previous entries and can be read as a stand-alone manual on the practical steps to create and use a PMR.

Because there is an extensive amount of information and portions of the reading are quite dense, I have provided a condensed version of the lengthier discussion in the section entitled The No-Nonsense Summary just after the introduction.

Finally, the continuation of this post³ will be a description of some of the practical issues I found in creating my own PMR and will illustrate many of the points raised in this discussion.

To maintain accessibility to this essay, it occupies its own page within the AlignMap web site, where it can now be read at

Footnotes

1. “Personal Medication Record” is the quasi-official name for a document with the important information about the medicines you take. Instead of “How To Create and Use A Personal Medication Record,” the title could have been “How To Create and Use A List Of Your Drugs,” “How To Make A Medication List,” “How To Make A List Of Medicines,” etc.↩
2. The previous posts in this series were
   1. Everyone Needs A Personal Medication Record
   2. Choosing The Right Personal Medication Record
   3. Compiling The Personal Medication Record

   ↩

3. The continuation should be published in the next 2-3 days↩

The Personal Medication Record – Part III

[This is the third in a series of AlignMap posts offering pragmatic tips for decreasing unintentional medication noncompliance (i.e., errors in taking medication) with methods now available. It is also the follow-up to The Personal Medication Record - Part I:Everyone Needs A Personal Medication Record and The Personal Medication Record - Part II:Choosing The Right Personal Medication Record.]

1. Decide which data to enter into your Personal Medication Record based on its utility to you and your healthcare providers, not on the slots and prompts of a form.

2. Enter information. especially personal identifying data, only if it yields a distinct advantage that outweighs the risk of privacy invasion and fraud.

3. Revise your Personal Medication Record immediately if there is any change in the medications you take, regardless of why the change took place. An outdated PMR may not only be inaccurate but also dangerous.

Not Too Much Data, Not Too Little Data, Just The Right Data

Despite the simplicity of the fundamental concept of a Personal Medication Record, which is, after all, at its heart only a gussied up list of the medications you take, the choice of which information is entered into a PMR can is neither obvious or insignificant.

A Personal Medication Record can be significantly diminished in value if certain information is not included, yet if every imaginably useful data point is required, it can become so complex that errors are generated and so burdensome that one avoids using it. Entering still other specific information (as prompted in some formats) puts the PMR’s owner at risk for fraud and other abuse.

The precise content of your PMR may be influenced by multiple factors, such as your heath status, support system, economic situation, relationship with those treating you, etc. Your degree of concern about the privacy of your data and the potential for fraud also play a role in this decision. The important issue is that it is indeed a decision for you to make. That a given PMR form has a space indicated for your Social Security Number, for example, does not mean that you entering that information is a good idea.

Consequently, rather than list a one size fits all protocol, my goal is instead to assist you in deciding which information to include in your PMR. Toward that end, have listed all the data categories from the PMRs I’ve researched in one of four classifications: Essential Personal Medication Record Information, Non-essential Information With High Potential Utility, Non-essential Information With Possible Utility, and Optional Information of Limited Utility That Incurs Privacy Risks.

Group A: The Essential Personal Medication Record Information

• Date of PMR creation and of most recent update
• Patient’s name
• Primary physician’s name and contact information
• Emergency contact information
• Medication* name, strength, and directions for use
• The reason for taking the medication (e.g., “for high blood pressure” “precaution against infection secondary to dental work”)
• Allergies and other medicine-related problems

*Include all medications, including those taken only occasionally, (e.g., medication for pain) or seasonally (e.g., allergy medication), over the counter drugs, vitamins and dietary supplements, herbal medicines, and samples)

Group B: Non-essential Information With High Potential Utility

• Medication issues and precautions (e.g., “Take with food” “Avoid sunlight”)
• Start date of currently used medications
• Stop date of discontinued medications
• Non-medication healthcare supplies (e.g., blood glucose test strips for diabetics, CPAP settings)
• Pharmacist’s name and contact information
• Prescriber name(s) and contact information
• Age (Not birth date)
• List of current medical problems

Group C: Non-essential Information With Possible Utility

• Illustration or description of medication’s appearance
• Specific notation whether generic or brand name of the medicine is taken
• Date of last vaccinations

Group D: Optional Information That Incurs Privacy Risks

• Social security number
• Insurance Information (e.g., Company, Group Number, Policy Number)
• Birth date (Listing age is not a significant privacy risk; birth date is)
• Location where medications can be found in home
• Address
• Home phone number
• Cell number
• Date of birth

Instructions For Use Of Personal Medication Record

1. Create and maintain a separate Personal Medication Record for each individual.
2. Carry a current copy of your Personal Medication Record with you at all times
3. Bring extra copies to any healthcare appointment, including pharmacy visits
4. If there is any change in the medications you take, regardless of why the change took place, immediately revise your Personal Medication Record and change the “Last Revised” date. It is also essential to send an updated copy of your PMR to your primary physician and your pharmacist. Finally, destroy all copies of the now outdated PMR.
5. Take care to spell medication names exactly as they are listed on their labels (many different medications have similar names) and and list their dosages and the frequency with which they taken accurately. If you cannot do so or if you are unsure, bring all your medications, including over the counter drugs, herbs, and vitamins with you to the doctor or pharmacist to receive help in completing the list.
6. If your understanding of your medication regimen is not identical to the information in your PMR, ask your physician or pharmacist for clarification; prompting questions and facilitating enlightenment is an excellent use of PMRs
7. Keep one copy of your PMR with you at all times, another copy in a safe, easy to find place (e.g., in an envelope taped under the dash or seat of your car), and another with your emergency contact. Replace all copies if the medications you take change. These paper copies of your PMR are necessary even if it is available online (in that case, print out copies).

Additional Instructions For Use Of On-line Personal Medication Record

1. Arrange for your physician to receive instructions to access your on-line PMR. Check that your physician’s office received them and has actually completed the procedure to assure they can access your PMR
2. Change your password no less often than every three months

Next

The next and final Personal Medication Record post is the account of how I chose a PMR for my own use, completed it, and have put it to use, drawing on the information in the first 3 Personal Medication Record posts.

The Personal Medication Record – Part II

This is the second in a series of AlignMap posts offering pragmatic tips for decreasing medication noncompliance by error with methods now available. It is also the follow-up to The Personal Medication Record – Part I: Everyone Needs A Personal Medication Record.

The No-Nonsense Summary
Choosing The Right Personal Medication Record¹

1. Any Personal Medication Record, including a list scribbled on the back of an envelope crammed into a wallet, is better than no Personal Medication Record.
2. The perfect Personal Medication Record form that isn’t used and kept up to date is not as good as the 23rd best Personal Medication Record form that is used and kept up to date.
3. The importance of selecting a Personal Medication Record that is satisfactory to your clinicians is secondary only to the importance of that PMR being satisfactory to you.
4. The information in a Personal Medication Record or Personal Health Record that is stored, whether in written or electronic form, or is maintained on-line by an employer, pharmacy, medical provider, insurer, etc. is at risk for being stolen or provided, intentionally or inadvertently, with others. That risk can be minimized but not eliminated. The issue is whether the benefits outweigh the risk.
5. The major factors to consider in choosing a Personal Medication Record are (1) who provides the PMR and thereby controls access to it and (2) is the PMR is accessible on-line.

Consider The Source

Many institutions and organizations, either alone or in collaboration, offer one or more versions of a Personal Medication Record (PMR) or a more comprehensive Personal Health Record (PHR) that includes a Personal Medication Record.²

The source of the PMR typically has a significant impact on its utility, cost, portability, accessibility, protection from theft and fraud, and especially the extent to which the privacy of its contents is guarded.

There may be no single Personal Medication Record from any source that combines all the best features with none of the negatives, but consumers should be aware of the tradeoffs before choosing one or another offering.

Personal Medication Records And The Healthcare Provider

One of the most important benefits of the PMR is providing your primary healthcare providers with information about the medications you are currently taking, even if someone else prescribed them or they are non-prescription drugs. Consequently, your Personal Medication Record should not only be easy for you to access and use but it should also be easy for your clinicians to access and use.

This principle is so fundamental that if your doctor or your healthcare organization offers³ or promotes a particular Personal Medication Record⁴ or expresses a preference in response to your query, I suggest you make that PMR your presumptive choice, opting for another format only if you find a distinct disadvantage with the clinician-preferred program (e.g., a significant fee is charged without compensatory benefits or the privacy policy is unacceptably lax) or another offering is clearly superior.⁵ My belief is that a clinician’s willingness to offer, promote, or state a preference for a PMR increases the chances that the clinician will be comfortable and skillful with that methodology and decreases the risk of using an unfamiliar PMR that the clinician finds frustrating or impossible to use.

In any case, I recommend that anyone choosing a Personal Medication Record check with the doctor’s office before making a final commitment to a format. I suspect most doctors will adhere to the same principle I do (i.e., that any medication list is better than no medication list) but the office may have experience with a given form and can advise that, for example, healthcare providers are not allowed on-line access to the Personal Medication Record affiliated with the XYZ Insurance Company. Additionally, asking for the doctor’s feedback can strengthen your working alliance with the clinician.

Advantages:

1. The clinicians who offer, promote, or prefer a specific PMR are more likely to use it, thus benefiting the patient
2. In a well constructed system, data collected by the provider will be automatically entered in the record rather than requiring the patient to do so
3. These programs are most often offered without charge

Disadvantages:

1. Patients who leave a practice that administers its own PMR will usually have to terminate their use of that system.
2. Provider-administered online PMRs may be less likely to allow other practices to access this data, regardless of the wishes of the patient.

Pharmacy-Affiliated Personal Medication Records

Many pharmacies, especially those in large chains make a PMR available. Also, in some regions, such as the states of Tennessee and Minnesota, pharmacy associations are involved in efforts to move to a standardized medication list format.⁶

Many of the drugstore chains have integrated a Personal Medication Record format into their refill ordering system and can alert you when refills should be due. At the least, nearly every pharmacy can provide a printout of your medication purchases, which may be helpful in completing your Personal Medication Record. Also, many pharmacists are willing to assist customers completing the forms, which may be helpful for anyone with a large number of medications, is unsure of the need for the medications prescribed, or needs extra help in organizing the record.

If you select your pharmacy’s PMR, be sure to list all your medications, not just those you purchase from that specific store. Include over the counter drugs, samples received from your clinicians, and prescriptions you fill elsewhere.⁷

Advantages:

1. Many pharmacies systematically monitor medication lists to alert customers to potentially dangerous doses or combinations of drugs
2. Some drugstore chains have integrated the Personal Medication Record format into their refill ordering system and can alert patients when refills are due
3. Much of the necessary data (i.e., the information re those medications obtained at that pharmacy) can be automatically entered, decreasing the patient’s workload and decreasing the risk of error
4. These programs are most often offered without charge

Disadvantages:

1. Fewer pharmacy-supported PMRs are available online

Personal Medication Records Provided By Health Insurers

Your health insurer may offer a Personal Medication Record, either free-standing or as part of a more extensive Personal Health Record, for their clients’ use. Many have designed their formats independently or in collaboration with hospital groups, pharmacists’ associations, other insurers, etc., and offer assistance in completing and storing them. This may be especially beneficial if you are involved in special programs offered by your insurer, such as a disease management program (e.g., for control of diabetes).

There are, however, two specific caveats:

1. Check the insurer’s policy re sharing information from the Personal Medication Record. Some insurance companies have maintained policies forbidding on-line access to this data to healthcare providers, regardless of the patient’s wishes.
2. Also check the company’s policy and procedures about the possibility of continuing the same insurer-administered Personal Medication Record should you change or drop your insurance with that company.

That these two issues are potential concerns does not mean that they are problems at all insurer-sponsored Personal Health Records. The following excerpt from Blue Cross and Blue Shield of Louisiana Introduces Portable Personal Health Record was selected for use in this post because it was the first documentation that turned up in my search that specifically addresses these points:

A third, even more serious concern is the potential that healthcare information held by the insurer could be used by companies to deny coverage or could be given, intentionally or accidentally, to others, such as employers, with deleterious results for the patient. This issue is especially worrisome because responses from insurers when this concern has been raised have characteristically been reassuring in tone but lacking in specific procedures that would safeguard the patient. The case is set forth in this excerpt from Insurers Push Patients Toward E-Health Records

More ominously, as noted in this report from the American Health Information Management Association “the Blue Cross Blue Shield of Illinois Web site informs members in the privacy disclaimer that information supplied may be used to better understand healthcare needs,” a clause so elastic as to justify almost any use of any information.

Advantages:

1. These programs are most often offered without charge
2. Much of the necessary data (i.e., the information re those medications covered through that insurance) can be automatically entered, decreasing the patient’s workload and decreasing the risk of error

Disadvantages:

1. Privacy issues are a potential problem
2. Patients who drop or change their insurance coverage may have to terminate their use of that system.
3. Some insurer-administered online PMRs do not allow on-line access to this data, regardless of the wishes of the patient.

Employer-Sponsored Personal Medication Records

Many employers supply Personal Health Records for employees to promote wellness programs and the concept of personal responsibility for ones own healthcare. The employer sponsored PMR may be administered by the employer-funded health insurance carrier and thus may resemble the insurer-sponsored PMRs and share its advantages and disadvantages.

Advantages:

1. Employer sponsored PMRs are usually offered without charge or at low cost
2. Employer sponsored PMRs may be linked to employer sponsored health coverage such that covered medications may be entered automatically

Disadvantages:

1. If the individual leaves the employer for another job, the PMR may be terminated.
2. There is the potential for the information to be used by the employer or other organizations to the patient’s detriment.

Independent Vendors Of Personal Health and Medication Records

Several companies, perhaps the most well known of which are Google⁸ and Microsoft,⁹ design and provide a Personal Medication Record, often as an element of a Personal Health Record, to sell to individuals who then control the content of and access to the record.¹⁰

Advantages:

1. The individual is in control¹¹
2. Many options, such as linkage to 911 systems, are available (at a price) or under development

Disadvantages:

1. Most charge a fee
2. The patient must enter all the data himself or herself

Pros and Cons of On-Line Personal Medication Records

Other than the issues arising as a result of which entity offers the PMR, the major factor in determining which Personal Medication Record best suits an individual is the distinction between those Personal Medication Records maintained on-line and those that are not.

On-line records almost always require a routine connection to the Internet (although some function so sluggishly with dial-up access that frustration could well discourage their use) and are password protected. They have the advantage of being available any time and (almost) anywhere, an especially important point in an emergency.

On-line records, however, do raise concerns about privacy and the trustworthiness and long-term viability of the organization providing service.

Concerns about losing data precipitously if the on-line provider folds are handled easily enough by maintaining ones own hard copy and electronic backups.

More problematic are the issues of privacy and theft. The consequences of one entire healthcare database falling into the wrong hands can be catastrophic. Consider this assessment from Loss of Protected Patient Information Real Danger for Health Care Plans

In fact, the increase in cybercrime has led to some advocating alternative technologies, such as portable media smart cards or encrypted USB keys to store health data, that are discussed later in this post. Of course, taking the data off the Internet sacrifices the advantage of 24 hour a day accessibility and facilitated sharing of information with, for example, emergency personnel.

Identity theft or fraud, data wrongly used by insurers, employers, or marketers, and data mining for litigation purposes are legitimate concerns about on-line health records that have, today at least, only incomplete answers.

As noted in the discussion of insurer-sponsored health records, one may wish to restrict data entry exclusively to medication information. If these on-line records do not include insurance ID and social security numbers, diagnoses, fiscal data, and similarly sensitive information, the risk of larceny is significantly diminished albeit not eliminated altogether.

For those of us who have surrendered the illusion of privacy for the convenience of Amazon holding the details of our credit cards for our next purchase there, limiting data we make available on-line and dealing only organizations with good reputations and track records may sufficiently assuage lingering anxieties.

And, there are alternatives available for those mistrustful of computers and the Internet, including a wide variety of paper and pencil medication records, electronic versions that can be used with a computer or handheld device (such as a Palm) without being accessible on-line, and hybrids which provide paper copies of electronically configured and stored files. Paper files have the advantage of requiring only basic literacy to complete and decipher but anyone who has kept a phone directory of friends for more than a year or two knows how difficult it can be to keep such files organized and decipherable. PMRs kept only on computers may be easier to construct but few of us carry our desktop computers with us at all times and emergency personnel may not be able to find a medication list within the documents stored in a Palm or to access password protected encrypted data.

Sample Personal Medication Records

The AARP offers a paper and pencil Personal Medication Record that can be downloaded at My Personal Medication Record as a Microsoft Word document or a PDF in English or Spanish or a printed copy can be ordered at 1-888-687-2277. Instructions on completing the form, how to manage updates, and more is also available.

The paper medication record developed by the American Society of Health-System Pharmacists is available at My Medicine List, and the MVP Heath Care full page and wallet sized formats can be downloaded in PDF format at Personal Medication List.

Information about free and for-fee on-line Personal Medication Records, courtesy of the American Health Information Management Association, can be found at My Personal Health Record.

Examples of companies selling encrypted USB keys for storing medical data include CapMed’s HealthKey and MedInfoChip.

WebMD Health Manager is an online service that organizes ones health information for a monthly fee.

Followme.com offers, for a yearly fee, both online and paper-based ways to manage medical records.

On-line PMR’s offered by providers (e.g., Kaiser-Permanente), insurers, and employers are available only to individuals affiliated with those organizations.

Next

The next post will address the information components that are essential to a Personal Medication Record, those that are optional but may prove helpful, and the information that is sometimes requested but may best be omitted. Then, to summarize this information, the final PMR post will be an account of my determination of the PMR best for me, the data entry for it, and how I use my PMR.

1. There is currently no formal definition of “Personal Medication Record” that is widely accepted, let alone a standardized Personal Medication Record format. A later post will discuss at length the essential and optional elements of a Personal Medication Record, but for now the Personal Medication Record can described, as it was in the previous post, as “a list that (1) includes at least the names of all the medications currently taken by the individual, the dosage of each medication, and the problem each medication is treating and (2) is readily accessible to that individual and to those treating that individual.”↩
2. In the context of this post, the definition of the term, “Personal Health Record,” is that set forth by the American Health Information Management Association: The personal health record (PHR) is an electronic, universally available, lifelong resource of health information needed by individuals to make health decisions. Individuals own and manage the information in the PHR, which comes from healthcare providers and the individual. The PHR is maintained in a secure and private environment, with the individual determining rights of access. The PHR is separate from and does not replace the legal record of any provider. AHIMA e-HIM Personal Health Record Work Group. “The Role of the Personal Health Record in the EHR.” Journal of AHIMA 76, no. 7 (July–August 2005): 64A–D.↩
3. The Department of Veterans Affairs is an example of a provider that supplies patients and employees Personal Health Records, including Personal Medication Records, developed in-house↩
4. Some providers may provide access to data concerning their care but not allow the patient to enter additional data. If the patient cannot enter data, the offering is insufficient as a Personal Medication Record↩
5. If the provider’s recommendation is rejected, it is essential that the person who made the suggestion is alerted to the decision and its rationale.↩
6. See Personal Medication Record Campaigns Get Underway↩
7. Whether or not you use the pharmacy’s Personal Medication Record, it is wise to routinely use only one pharmacy to consolidate all of your prescriptions and make it possible for the pharmacist to check for possible interactions and alert you to potential problems. This is especially helpful if more than one physician write prescriptions for you.↩
8. See Google, then Gargle↩
9. See Microsoft To Launch “Search-Engine Supported” Site For Health Records↩
10. Other independent vendors may develop PMRs and PHRs which are sold to insurers, employers, pharmacies, and other entities who, in turn, offer them to individuals. In those cases, the characteristics, advantages, and disadvantages of the PMR are those of the sponsoring body.↩
11. While the concept of the individual controlling his or her health information is fundamental to independent PMRs and PHRs, the sanctity of that principle is ultimately protected only by the integrity of that vendor↩

In The Personal Medication Record – Part I, I pushed the notion that the “Everyone” in “Everyone Should Carry A Complete List of All Current Medications” meant “Everyone,” not just the elderly.

Consequently, this morning when I serendipitously read Remembering Your Medications: Older Are Wiser, a Science Daily report of a 1998 study that investigated the “common sense” idea that the elderly are at greater risk for making mistakes in their medication regimens, I felt compelled to post this excerpt – especially since it supports my point of view.

Remembering Your Medications: Older Are Wiser

“Being too busy, not being old, is what leads people to make mistakes in taking their medications,” says Denise C. Park, a psychologist at the U-M Institute for Social Research who presented her findings this month at the annual meeting of the International Congress of Applied Psychology.

As the population ages, the problem of forgetting to take the pills your doctor ordered–the right number of the right kind at the right times–will affect more and more people who are trying to manage diabetes, depression, high blood pressure, arthritis and other chronic age-related conditions.

According to Park, the conventional view has been that as patients age, their medication adherence rates drop, just when their need to manage complicated medication schedules increases.

With funding from the National Institute on Aging, Park and colleagues carried out a study designed not only to learn who really is most likely to make mistakes, but also what kinds of errors occur and why they’re being made.

For eight weeks, the researchers studied 121 men and women between the ages of 34 and 84, all diagnosed with moderately severe rheumatoid arthritis.

“We selected that illness because we expected medication adherence to be very good,” says Park. “Taking the medications commonly prescribed leads to real relief from pain, stiffness, and other symptoms. And that gives people a strong motivation to take medications on schedule.” Participants in the study took four types of medication, on average.

At the start of the study, researchers tested all the participants to determine their levels of depression and anxiety, and to see what their attitudes were about arthritis and disease in general. They also asked how helpful participants thought it was to take the specific medications they had, and medications in general. Participants also went through a range of tests assessing their memory, recall and other measures of mental functioning.

Park and her colleagues developed the “Busy Life Style Questionnaire,” to measure the chaos and unpredictability in the daily lives of participants. Among the items were questions asking how often you have too many things to do each day to get them all done, how often you’re so busy that you miss scheduled breaks or rest periods, or stay up later than normal, and how often you follow other regular routines, including eating meals at about the same time each day, or engaging in regular activities at home, such as reading the paper, watching a particular television show, or talking with family members.

After these initial assessments, participants received the prescriptions they were taking in new containers, special bottles with caps containing tiny electronic monitoring chips that recorded exactly when the bottles were opened.

After eight weeks, all the participants turned in the new containers. The information in the bottle-cap chips was downloaded into a computer file and analyzed.

Overall, the researchers found a surprisingly high level of adherence. Nearly 40 percent of participants didn’t make a single medication error during the two months studied. Of all the mistakes that were made, more than 98 percent were errors of omission; only 1.2 percent took an extra dose.

Perfect adherence was more common among older than younger adults, Parks found. Fully 47 percent of those over the age of 55 made no mistakes, compared with only 28 percent of those between the ages of 34 and 54.

What usually led to mistakes was being too busy, Park notes. Being slightly unhappy also contributed, combined with the belief that taking the medication as prescribed may make you feel better physically but won’t make you feel any better emotionally.

“Being a very busy person is the single biggest risk factor we found,” says Park. “Having a life that’s overly full leaves little time to attend to health concerns.”

For doctors, the implications of the research are clear. “Consider prescribing simpler drug regimens for busy, middle-aged patients, not for older patients,” says Park.

For middle-aged people too busy to take care of their health by remembering to take their medications on time, Park suggests using memory aids like written reminders or beeping wristwatches.

Yet, the large majority of these recommendations are directed at the elderly. And, while one might argue that older patients have the greatest need for such lists because they tend to take more different medications and to have more problems with memory than younger individuals, that hardly negates the value of a personal medication record for everyone else.

The Personal Medication Record – Part I

[As I had indicated before technical problems intervened, the next AlignMap posts will deal with pragmatic tips for decreasing medication noncompliance by error with methods now available. Today's post is the first in that series.]

1. To achieve optimal healthcare in general and decrease unintentional medication noncompliance in particular, every individual needs a Personal Medication Record¹ – a list that (1) includes at least the names of all the medications currently taken by the individual, the dosage of each medication, and the problem each medication is treating and (2) is readily accessible to that individual and to those treating that individual.

2. Every individual needs a Personal Medication Record, regardless of the individual’s age, health status, and amount or type of medications taken, including those taking no medications.

A Medication List Is Essential For Optimal Healthcare and Patient Compliance

This is hardly a controversial recommendation. The most restrictive Google search for the term, “personal medication record,” shows over 13,000 hits, and my cursory scan of at least the first 100 indicates they are sites offering to provide such records or to instruct clients in their use.

Everyone Means Everyone

Yet, the large majority of these recommendations are directed at the elderly. And, while one might argue that older patients have the greatest need for such lists because they tend to take more different medications and to have more problems with memory than younger individuals, that hardly negates the value of a personal medication record for everyone else.

Spinning scenarios in which the brightest young adult on a single medication might nonetheless need a personal medication record is easy and amusing.

Less dramatically, it’s far too easy for anyone, even with an intact memory, to forget to include a medication, especially if it is an over-the-counter preparation or is taken only as needed, or to fail to notify one doctor’s office of a dosage change made by another doctor. Most of us have had the experience of shopping at the grocery store, only to return home without the item that was the primary reason for the trip. And, consequently, most of us acknowledge the wisdom of a grocery list. Well, “The Personal Medication Record” is, in its fundamentals, the gussied up version of that grocery list that we usually scrawl on the back of an envelope.

Even more mundanely, it saves time and reduces anxiety if one can respond to the triage nurse’s standard and important query, “Do you take any medications?” by handing over a written list rather than attempting to re-create that list from memory at a time when ones psychological and physical condition may be impaired.

And, “everyone” includes those who take no medication. The most empathic and clinically astute physician cannot ascertain from the absence of a medications list if the patient is taking no medication, one medication, two medications, 24 medications, … . A medication listing that reads “22 April 2007 – Currently taking no over the counter or prescribed medications” is potentially as useful as a list containing a dozen prescribed drugs.

Now that it’s clear Who should have a personal medication record (everyone, regardless of age and regardless of if he or she takes medication), the next post will focus on how to go about choosing Which of the many personal medication records available is best for a specific patient.

Footnotes

1. There is currently no formal definition of “Personal Medication Record” that is widely accepted, let alone a standardized Personal Medication Record format. A later post will discuss at length the essential and optional elements of a Personal Medication Record, but for now the Personal Medication Record can described, as it is above, as “a list that (1) includes at least the names of all the medications currently taken by the individual, the dosage of each medication, and the problem each medication is treating and (2) is readily accessible to that individual and to those treating that individual.”↩

Patients Unable to Provide Names of Their Medications

This post started out as another of those How About That? items.

This news release version of a study to be published in the November issue of the Journal of General Internal Medicine resolves to a single punchline,

Commentary

Those familiar with AlignMap posts on health literacy¹ will not find that result (nor the additional fact that the “number jumped to 60 percent for those with low health literacy”) surprising.

This is a specific area within patient compliance – noncompliance by error – that, it would seem, could be directly addressed by treatment plan presentation protocols, technology, and didactic efforts. And, in fact, I have come across some promising ideas lately.

Consequently, the next AlignMap posts will deal with pragmatic tips for decreasing medication noncompliance by error with methods now available.

How about that?

Source: Name that drug: Many patients can’t

Foonotes

1. AlignMap posts focusing on health literacy include, among others, including Health Literacy , Medication Leaflets, and The Gap Betwixt, Persistent Themes: Health Literacy and Incentive Plans, Health Literacy: A Clear Problem Without A Clear Solution, and Healthcare Illiteracy Linked To Higher Mortality Among Elderly ↩