Diagnosis Is Not Therapy

PAMWe all know “that patient” – the one we may dismissively label “noncompliant.”

The person with diabetes whose HA1C is consistently above normal limits – the one who swears, when confronted with the numbers (yet again) he’ll start eating right and using his insulin as prescribed.

And yet, month after month, the lab work tells a different story. We watch in helpless frustration as patients like these spiral downward, developing complication after complication.

I thought about “that patient” as I read a recent Wall Street Journal article describing Dr. Judith Hibbard’s Patient Activation Measure (PAM), which she and her colleagues at the University of Oregon developed some years ago.

First, let me say I greatly admire the research and work of Dr. Hibbard and her team; I believe that the PAM is a wonderful tool and a step forward in better understanding patients.

While the article, and Dr. Hibbard, argue that the use of the tool can better target the needs of patients – and I agree – I can’t help but worry that the entire premise that patients need to be “activated” misses a point.

Patients are people before they are patients.

We know that when people are sick, they are still part of their broader world of family, friends and finances. We also know that their social, spiritual and psychological selves are every bit as important, and as important to their “cure” as their activation as a patient.

I suspect that Dr. Hibbard would agree with me and even argue that the PAM reflects all of these factors.

PAM is accurately diagnosing the end state – how all these factors impact the patient and the patient’s ability to be involved in his or her own care.

I worry, however, that the PAM may be oversold by healthcare administrators who put it in place as a way of trying to address all the factors that affect patient activation.

The PAM does not substitute for healthcare professionals having the time and the skills they need to really understand their patients, their life context, their culture, their family and their work. That understanding helps inform strategies that can truly help address the patient’s level of activation.

A tool — no matter how good, no matter how academically precise and scientific — cannot take the place of understanding a person’s story and values.

It almost seems that diagnosing a patient’s level of activation is the easiest part. The much harder part is finding ways to help people change their degree of activation. That is not a matter of finding the right algorithm or the right tool, but rather developing an individual approach to understanding the life of the person before you, gaining his or her trust, and then helping that person overcome barriers — emotional, social, financial, and time-based.

It is not simply a questionnaire or a one-visit exercise. Rather, it takes place over time, as the caring professional proves he or she is worthy of trust — and thus gains the right to help the patient change and allow him or her to decide on the best course of action.

Which takes me back to “that patient.” It’s not enough to know his Patient Activation Measure (although it is, indeed, important). I must also understand that this month, he had to choose between food and insulin – and he chose food. I must know that because of past experience, he’s deathly afraid of needles.

Or I must recognize that because of his glaucoma, he has a difficult time seeing clearly enough to draw up his insulin.

But I will only know and understand all those things about my patient if I have time to build a relationship with him – a relationship between two equals and built upon a foundation of trust.

The question then becomes whether we, as a society, will give our professionals the time, skills and resources they need to truly build the relationship with their patients so that they can help them be more activated.

So by all means, use the PAM to better understand patients’ degree of involvement in their care. However, never forget that what brings them to the point of activation is their own life context, their own values and their own beliefs.

A good health professional needs to understand all of those factors, gain the trust of the patient, and ultimately respect that patient as the complete person they are before they can help “activate” him or her.

Alan Spiro, MD, MBA is chief medical officer of Accolade, a health consumer services company. 

4 replies »

  1. As a person with a long term health condition who has completed a PAM the questions did not mach what I was really concerned about and medicalised my who experience. Also i do not know what meds to take, nobody does and when I have a flare there is nothing I can do- so I scored 2, yet I look after myself, work hard on my social life etc, stay in work yet none of this is recognised by the PAM which reduces me to a diagnostic number. I can see why doctors like it so much, fits perfectly with the medical model

  2. “…the entire premise that patients need to be “activated”…”

    if Dr Spiro really believes that the ENTIRE premise is that patients need to be “activated”, it is Dr Spiro that misses a point.

    PAM provides a quick, helpful way to know where a person is at “point of engagement”. Maybe they DON’T need to be activated – how do you know if you don’t have some way of gauging that, other than your formidable years of abstruse medical education and your ineffable medical “talents”?

    The answer of course is that you don’t have a way – certainly not a way that you can share with any peers or other clinicians or anyone who may, you know, actually play a role in keeping/getting someone healthy.

    But not enough physicians regularly think in this sort of systematic way about what it is they do as health care actors. More typically, they think about themselves. THEN they think about patients, and THEN about people. So it shouldn’t be too surprising that a surprising number of physicians will not “get” something like PAM.

  3. We really need the patients brain. We get this by getting his present complaint and history and by working with him/her throughout. This is why his trust in us affects his outcome. Better information is everyone’s goal.

    The wisdom of crowds helps us: the patient has the most information. The doc. the nurse, NP, PA, LVN, PT, OT, lab, echo, and radiation tech… everyone is important.

    Fact: the best docs read the nurses notes, and all these other inputs.