In any movement there’s a stage of maturation, where aspirations get fleshed out with specifics. That time is arriving for participatory medicine.
As patient engagement (aka consumer engagement) earns attention, the question increasingly arises: “Where do we start? What can we do?” More specifically, “What do we mean when we say ‘patient engagement’?”
CFAH Engagement Behavior Framework
For me, the first big conceptual breakthrough was in May, when Jessie Gruman’s Center for Advancing Health published its Engagement Behavior Framework, as we reported here. (See PDFs at bottom of that post.) Her team methodically identified 43 behaviors – 43 ways every patient or their proxy will sooner or later engage with the system. They grouped them into ten categories:
- Find Safe, Decent Care
- Communicate with Health Care Professionals
- Organize Health Care
- Pay for Health Care
- Make Good Treatment Decisions
- Participate in Treatment
- Promote Health
- Get Preventive Health Care
- Plan for the End of Life
- Seek Health Knowledge
What a great list of “how I’ll know one when I see one!” Tangible, concrete, specific. The full list of 43 could even be a syllabus.
But skeptics point out that some patients – some say most patients – don’t want to do anything. I can’t count the times I’ve heard docs say patients are lazy or irresponsible – most recently in the new HealthLeaders magazine: “In our annual Industry Survey, leaders cite patient noncompliance and lack of responsibility as the fifth-greatest driver of costs.” (We all know couch potatoes, but ugh, what a useless thing for executives to say. They act disempowered.)
And yet, there are also e-patients: empowered, engaged, educated, enabled – doing what the CFAH describes. How can we move people from spud to spunky?
Patient Activation Measure (PAM)
This summer I learned about the Patient Activation Measure (PAM). (I heard of it years ago, but didn’t learn about it.) The PAM is a commercially licensed tool created by Judy Hibbard’s team at the University of Oregon for methodically assessing how activated a patient is – and, importantly, what to do with that information, to improve outcomes.
Addendum 12/26/11: In an email this summer I asked Dr. Hibbard what she’d say if asked to sum up the whole thing. Her reply:Being patient centered means meeting patients where they are. The PAM helps providers understand where a patient is starting from. For providers, the PAM is like another “vital sign” telling them essential information they need to effectively work with the patient.
Thirteen questions are asked, and patients are scored as level 1, 2, 3 or 4:
- Does not yet believe they have active/important role
- Lack confidence and knowledge to take action
- Beginning to take action
- Maintaining behavior over time
This 45 slide presentation tells more.
- Slide 6: What does it mean to be activated?
- Slide 8: The 13 questions
- Slide 12: Activation level predicts behaviors
- Slide 14: Example: differences in health behaviors among diabetes patients at each level
- Slide 24: Activation can predict utilization (level of spending) and outcomes two years out
- Slide 26: Increases in activation are possible. (Note – this is different from “compliance”!)
- Slides 31-33: Differentially tailoring how patients are coached, based on activation level
The last slide sums up the apparently practical nature of this approach:
- Start where the patient is
- Encourage realistic steps – creating opportunities to experience success.
- Build on strengths
- Attention to emotions
- Use measurement to assess and to track progress
Time for Action
It’s time to get to work on connecting the dots between these frameworks and outcomes. We need to develop and disseminate best practices for participatory medicine. You can’t do it without an engaged participatory doc, and you can’t do it without an engaged, participating patient.
Fascinating! For a long time something has been bugging me with the PAM scale and I couldn’t put a finger on it. Looking at the slide deck I figured it.
Have a look at Development of the Patient Activation Measure (PAM): Conceptualizing and Measuring Activation in Patients and Consumers (2004). PAM is designed to measure the level fo activation of patients suffering from chronic diseases like diabetes and HBP. It doesn’t scale to cancer patients and other serious ailments where Tx decisions cannot be made via your classical decision tree.
To be an activated and engaged cancer patient requires a degree of knowledge that is above phase 4 of the PAM scale! Newly subscribed patients of any ACOR lists start at level 2. Many of the long term survivors that are most actives in our groups belong to what I have to imagine as level 5 and 6.
The 4 levels of this PAM scale still carry some level of paternalism. Nowhere does the PAM scale considers that the patient may know more about their disease, a situation we witness daily. PAM is a wonderful tool to classify behavior of diabetes patients, but it is unusable in its present form to characterize all those who deal with cancer and any one of the 8,000 rare diseases.
Great insight, Gilles. I completely agree that we need a next level or two. Got any ideas?
Along similar lines, what do you think about the CFAH framework?
I am deeply appreciative of Jessie’s fantastic work but I honestly do not know enough about the Engagement Behavior Framework to be able to make ANY comment on it. I’ll look into it over the next few day and will return to comment then.
I should add that I think you’re speaking of something I too have been saying lately: there’s an implicit assumption throughout healthcare that of course all value and wisdom in medical matters arise from the doctors. We now know that’s a thoroughly incomplete view, and many of us are starting to look at how to rethink things given this newly recognized source of value.
I can only speak about oncology! But I believe that what I have/am learning about oncology applies to most if not all of the rare diseases and to any disease with a clear genetic component.
Let me go wild and say that PAM is applicable to the part of medicine where the level of genetic canalization is high and therefore algorithmic decisions work for most patients, and it stops functioning for diseases and conditions where manifestations of the conditions vary due to high levels of phenotypic plasticity, requiring each individual to be aware of her genetic specificity.
The implicit assumption you mentioned is just plainly absurd and dangerous. We all know that doctors rarely describe accurately the extent of the side effects of any treatment. Often this is just a nuisance, but this behavior can easily produce very serious situations. If you ask me to rate, in oncology, who are the best sources of accurate information about side effects and adverse events, I would put at the same level the clinical researchers and patients in online communities. These are the only stakeholders with enough information and lack of bias to accurately report and study what’s going on.
It is not by chance that your ACOR online community provided you the same information that you obtained from your Harvard-related hospital. It all fits nicely into this model of multi-speed medicine. Since most people are not able to be treated in a Harvard associated hospital, the central role of the online communities becomes easy to understand.
Let me be perfectly clear and politically incorrect: most oncologists working in community cancer centers are able to deliver appropriately the standard of care. Unfortunately, standard of care is insufficient to get optimal results in cancer care. And it’s easy to die from this simple fact.
Gilles, here’s a follow-up four years later. (I’m in a conference session in Pennsylvania and the PAM came up again, which led me to look back at our discussions.)
After 4 years of talking about the PAM to different groups I’m here to SHOUT “Yes, exactly, you’re completely right” about the PAM’s 4 levels being insufficient. (I’m in no way saying levels 1-4 are wrong – I’m saying it’s time to extend it to 5 and 6.)
Dr. Hibbard responded back then, saying the PAM is about the underlying constructs and is useful in lots of different conditions. I agree, but for our purposes, exploring the role of the thinking, contributing, autonomous patients, we need more. I’ve seen two detrimental effects from the PAM’s levels stopping at 4:
1. Because the PAM is so good and so well validated, many many clinicians have learned from it – so THEIR conception of an engaged patient often stops (in my experience) at level 4’s “Maintains health behaviors,” aka “follows our instructions great,” In this model, there is no concept of a more actived patient than that… so, naturally, many clinicians think someone like an SPM member is a “unicorn.”
2. More important, once a patient reaches level 4 (“Maintains health behaviors”), clinicians who are well schooled in the PAM have nowhere else to lead them – activation and development are complete! There’s nothing more to encourage us to do (in the PAM model), no more skills to coach people to develop.
And all that leads to a pernicious third effect: the often-heard “There’s no evidence” that being more activated makes any difference. Because it hasn’t even been on the landscape to study.
What do you think about defining what levels 5 and 6 would look like?
My comments here are in response to the concerns that the PAM is not relevant to cancer patients. The PAM is a latent construct, meaning it is measuring an underlying idea. We think it is measuring an individual’s self-concept as a self-manager. That is why it is related to such a wide array of behaviors and outcomes. Because of this, the PAM is relevant to any condition that requires the patient to play an important role. Cancer certainly fits into this category, as do other less common and serious conditions. For example, More activated patients will be more likely to seek out information and try more strategies for managing symptoms, take more preventive actions, and be more vigilant about following drug regimens.
The PAM has been successfully used to predict outcomes with a wide range of conditions including: serious mental health diagnosis, heart disease, multiple scelorisis, COPD, inflammatory bowel syndrome, hypertension, asthma, recovery after spine surgery, AIDS, and diabetes. Studies have also shown that the PAM is predictive of outcomes for those who are multi-morbid (4 or more conditions). The Center for the Study of Health Systems Change Research Brief, shows that cancer patients have a similar distribution on the PAM as other patients (slightly higher than some conditions). Another study shows that increasing activation increased cancer screening among a low-income minority population. And while there are not studies that focus specifically on cancer patients, cancer patients are included in many of the studies. I agree that future studies examining activation as a predictor of outcomes– specifically among cancer patients– would be helpful.
Great to see you here, Judy!
Without soaking up your whole holiday week, is there a list somewhere of links to the studies you cite about predicting outcomes?
Here is an abbreviated list of publications that link activation with improved outcomes:
Becker, E., Roblin, D. Translating Primary Care Practice Climate into Patient Activation: The Role of Patient Trust in Physician. Medical Care. 46 (8),795-805. 2008.
Begum N , Donald M, Ozolins IZ, Dower J. Hospital admissions, emergency department utilisation and patient activation for self-management among people with diabetes. Diabetes Res Clin Pract. 2011.
Cunningham P, Hibbard JH. Gibbons C. Raising Low Patient Activation Rates Among Hispanic Immigrants May Equal Expanded Coverage in Reducing Access Disparities. Health Affairs. 30(10): 1888-1894. 2011.
Deen D, Lu WH, Rothstein D, Santana L, Gold MR. Asking questions: The effect of a brief intervention in community health centers on patient activation. Patient Education and Counseling. August 2010.
Druss BG, Zhao L, von Esenwein S, Bona JR, Fricks L, Jenkins-Tucker S, Sterling E, DiClemente R, Lorig K. The Health and Recovery Peer (HARP) Program: A peer-led intervention to improve medical self-management for persons with serious mental illness. Schizophrenia Research. 118:264–270. 2010.
Greene J, Hibbard JH. Why does patient activation matter? An examination of the relationships between patient activation and health-related outcomes. Journal of General Internal Medicine
Hibbard, JH, Mahoney E, Stock R, Tusler M. Do Increases in Patient Activation Result in Improved Self-management Behaviors? Health Services Research. 2007; 42(4).
Hibbard JH and Green J. Who are we reaching through the patient portal: Engaging the already engaged. The International Journal of Person Centered Medicine. In Press.
Hibbard JH, Greene J, Tusler. Improving the Outcomes of Disease-Management by Tailoring Care to the Patient’s Level of Activation. American Journal of Managed Care. Vol 15 No 6:353-360. June 2009.
Hibbard JH, Greene J, Painter M, Perez D, Burbank-Schmitt E, Tusler M. Racial and Ethnic Disparities and Consumer Health Activation Health Affairs. 27, No 5; 2008.
Hibbard JH and Cunningham P. How Engaged Are Consumers in Their Health and Health Care, and Why Does it Matter? Center for Studying Health Systems Change Research Brief. October 2008.
Hibbard JH. Assessing Activation Stage and Employing a ‘Next Steps’ Approach to Supporting Patient Self-Management. Journal of Ambulatory Care Management. Volume 30 No 1; 2-8: 2007.
Fowles J, Terry P, Xi M, Hibbard JH, Bloom CT, Harvey L. Measuring self-management of patients’ and employees’ health: Further validation of the Patient Activation Measure (PAM) based on its relation to employee characteristics. Patient Education and Counseling. Vol 77 No.2:116-122. 2009.
Frosch DL, Rincon D, Ochoa S. mangione CM. Activating Seniors to improve Chronic Disease Care. Journal of the American Geriatric Society. Vol 58 No. 8: 1476-1503. 2010.
Mosen D, Schmittdiel J, Hibbard JH, Sobel D, Remmers C, Bellows J. Is Patient Activation Associated with Outcomes of Care for Adults with Chronic Conditions? Journal of Ambulatory Care Management. Volume 30 No 1; 21-29: 2007.
Rask K, Ziemier DC, Kohler SA, Hawley JN, Arinde FJ, Barnes CS. Patient Activation Is Associated With Healthy Behaviors and Ease in Managing Diabetes in an Indigent Population. The Diabetes Educator. Vol 35 No 4:622. 2009.
Remmers CL, Hibbard JH, Mosen D, Wagenfeld M, Hoye RE, Jones C. Is Patient Activation Associated with Future Health Outcomes and Health Care Utilization Among Patients with Diabetes? Journal of Ambulatory Can Management. Vol. 32 (2), 2009.
Hi Dr. Hibbard,
Thank you for your reference list. Do you have knowledge of the use of PAM in End Stage Renal Disease? Interested in validation of the tool with people on dialysis and using the results to help guide Care Managers approach to members.
I know that DaVita (Davita.com), which provides services for patients with kidney diseases and dialysis– uses the PAM with all their patients and have done so for some time now. I am not sure about published studies with this population. However, the PAM is a useful tool, for any situation where the patient needs to play an important role. I would imagine End Stage Renal Disease fits into that category.
I would like to incorporate PAM into my clinical practice. How do I go about doing that?
Great! You can get help with accessing and using the PAM from Insignia Health. They provide the measure, scoring, training and other tools to help users apply this approach in the clinical setting. Contact Craig Swanson at: firstname.lastname@example.org.
I have been living with AIDS for 12+ years. I suffered two life threating adverse events from the meds. All doctors will not even acknowledge the events. My ID specialists call them ” the problem”. I have spoken to ten MDs and they run away shreiking in horror. Not for the damage to my body, but the fear of a lawsuit. Doctors do not want an informed, engaged patient. We are labeled “problem patients”. Doctors will not tolerate anyone questioning their decisions or the ensuing outcome. The doctor -patient relationship means the patient simply shuts up and follows orders. Any deviation is not acceptable. I have seen this behavior in at least 15 doctors. They are all the same. Trying to change that is a waste of time. It will never happen.
John, I’m VERY sorry about your bad experience. I don’t know what we can do to find you a different doctor, because I know for a fact that your blanket generalization is wrong: some doctors do want engaged patients.
Anyone have any suggestions for John?
Does anyone know of a patient engagement tool that is not copyrighted and is free to use?
Try the EC-17, effective consumer scale, http://www.cgh.uottawa.ca/eng/effective_consumers.html
There was mention of a National Netowrk Study from 2008 in this. Does anyone know what articles (if any) relate to this particular study? We are hoping to use PAM for some nursing research projects here in Northern VA.
I’m in GRAD school working on my MSW and have chosen PAM for my study measure in a because it has many strengths for chronic conditions. My difficulty is that I have not been able to find any limitations listed, that have not been squashed down the road. Strengths & Limitations is a common requested feature in nearly every paper I have written this past year. If you had to declare what 2 or 3 limitations are, please list them here so I may further research them, thank you!
Heather, thanks for the comment but I doubt that this is the best way to reach her – you’ll be better off finding her on the university’s website. Good luck!
I’m wondering if you can assist me. I am in the process of researching PAM13 and found a reference in Wiki saying the questionnaire has been translated into 19 languages. I have only found three that have been validated in German, Danish and Dutch. Do you know what other languages have been validated and how I can get a hold of the translations and any referenced material on their validity?
Many thanks for any assistance you can offer.
I dropped her a note, Maria – she doesn’t “work here,” so to speak, but perhaps she’ll respond if she’s not off on vacation or something.
In case you haven’t seen it, the product’s web page is here.
Dr. Hibbard responds:
[Insignia is the company that markets the product.]
Hi Dr Hibbard
Thank you for your assistance, I did send an inquiry to insigniahealth via their website but did not receive a reply. We are planning on getting a licence prior to commencing our own study.
Thank you again.
Sorry you have had difficulty getting the info you need on PAM. Please contact me directly via email and I will answer all of your questions. email@example.com
Is there a paediatric version of PAM and, if so, supportive literature?
Interesting question – I don’t know. (Sorry for the delay in releasing this comment – I was away.)
There is a parent version of the PAM used in pediatrics. there is one published study using the measure and a few others in the pipe line. The Parent PAM is also licensed thru Insignia Health.
Here is the citation on the paper:
111. Pennarola BW, Rodday AM, Mayer DK, Ratichek SJ, Davies SM, Syrjala KL, Patel S, Bingen K, Kupst MJ, Schwartz L, Guinan EC, Hibbard JH, Parsons SK. “Factors Associated With Parental Activation in Pediatric Hematopoietic Stem Cell Transplant.” Medical Care Research and Review December 2011. 1077558711431460. http://www.ncbi.nlm.nih.gov/pubmed/22203645
Dr. Hibbard. Has any correlation been found between the PAM and the PACIC (patient assessment of chronic illness care? thx,
Hi Mark – sorry for the delay in approving your comment – we have a spam blocker (much needed) that holds the first comment from any unknown party. Anything you post from now on should be immediately approved.
Mark, yes the PAM is significantly correlated with the PACIC– r=.40.
Glasgow RE, Wagner E MD, Schaefer J, Mahoney LD, Reid R, MD, Greene SM. Development and Validation of the Patient Assessment of Chronic Illness Care (PACIC)
Medical Care May 2005.
Thx kindly Dr. Hibbard!
I would like to use your PAM as one of the measures in my doctoral research study that is seeking to identify the health information technology use and health literacy among community-dwelling Hispanic Americans? I would like to see if a relationship exists between the patient’s reported activation levels, HIT use and health literacy.
Rick, is there a question in that? It seems like you were making a statement but there’s a question mark in it.
For most questions about the survey Dr Hibbard generally refers people to the marketer, Insignia Health, per this comment.
I know this comment trail is a few years old, but was wondering if someone has an answer for me. We use the original PAM 13, but I’ve noticed a more recent version on the web has the questions more simplified. That would be much better for our patient population. Should we be using the simpler version? I’ve emailed Insignia
You did the right thing – email Insignia. Share whatever you hear back!