1 I think Ill addressthat first.Butwell also talk abouthowpatient - - PDF document

This isa question ¡that I get very often: What’s the differencebetween ¡patient engagement and patient activation? Arethey the same? Arethey different?

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I think I’ll addressthat first.Butwe’ll also talk abouthowpatient activation is linked with the use of ¡information;whatis the evidence that activation is predictiveof ¡

• utcome, such ¡as behaviors,utilization,costs;and ¡what do we knowabouthow to

increase thisin patients. I’ll spend justa minute talkingabouthowdelivery systems are usingthis kind ¡of measurement in innovativewaysand ¡then,finally, end ¡u with ¡what the implicationsof all of thisis for supportingtheuseof information in healthcare decisionsamong consumers.

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Whatis patientengagement? Asyou ¡all know,this term isused ¡pretty loosely.People all say the same thing,but they mean ¡differentthings.A common ¡way it is used ¡is to describeinterventionsto increase involvementor participation;or theresulting participation ¡or involvement;or both;or somethingelse. When ¡we started ¡the work on ¡ patient activation we spent a lot of time on definitionsto be very clear whatit was we were tryingto measure.

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The definition ¡thatwe came u with ¡after workingwith ¡a national expertconsensus panel, with ¡patients, and ¡goingto the literatureisthat an ¡activated ¡consumer or patient is onewho hasthe motivation,knowledge, skill,and confidence to takeon the roleof managingtheir health ¡or their healthcare. That is, an ¡individual who understandswhat their roleis and feels competent and ableto do it. Thiswas one of the firstthingsthat we learned ¡after workingon ¡measurementin ¡this area is in ¡almost any population ¡ group thatwe havelooked at you see a full range.You see peoplewho are very passive abouttheir health ¡and ¡people who arevery proactive.And ¡that doesn’tmatter if they areeighty-­‑fiveyear oldsyou’relookingator if it is Medicaid;you’ll see that full distribution.Whatyou ¡do seeis that the mean ¡will movea bit. For some groupsthe mean ¡will be lower and ¡for some groupsthemean ¡will be higher.Butthe pointis that you ¡don’tknow. Just because someone is maybedisadvantaged ¡in ¡certain ¡ways, that doesn’t mean ¡that they aren’t proactiveabouttheir health. And,in ¡fact, demographics -­‑ age, education, income, gender -­‑ account for aboutfiveor six percentof the variation ¡ in patient ¡activation scores. But ¡it ¡is there.it ¡is just ¡not ¡very powerful.Welooked at ¡the same question per health literacy and it isabout twenty-­‑fivepercentof the variation is accounted ¡for by thosesame variables.

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Here’s the measure. A as you can see there arejust declarativestatements about-­‑-­‑ and ¡ they’re ¡very general-­‑-­‑ that peoplemight make abouttheir health and they respond with degrees of agreement or disagreement.

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We were able tosee that there appears tobe levels or stages that people gothroughontheir waytobecoming effective ¡self-­‑managers. Andveryearlyonwe didin-­‑depth ¡interviews with ¡ people along this dimension ¡whounderstand ¡how dotheyunderstand ¡their role, how dothey cope and respond. Andit was quite informative. We sawthat people whomeasuredlowonthis scale theyhadmuchmore experience withfailure;theywere muchmore likelytosaythings like, “It doesn’t reallymatter what I do. I can’t have a positive impact onmyhealth.” Theywere

• discouraged. Theywere overwhelmed ¡with ¡the taskof managingtheir health. Theyhad ¡very

poor or low competence and ¡manyhad ¡poor problem-­‑solving skills. Andthenthe other surprising thing was manyof them didn’t reallyunderstand ¡what their role was.Theythought it was tobe passive inthe medical ¡encounter. All ¡of that has lot of implications, whichI’lltalk about at the end-­‑-­‑ about what does that mean ¡for engaging people with ¡information. We ended ¡up using a Rasch analysistocreate the measure. There are twocharacteristics I want to just mentionhere. One is that it is interval-­‑level ¡measurement. Soit is more like ruler with equal distance between ¡the marks on ¡the ruler and ¡that means that the measure is more precise and ¡consistent than ¡most social-­‑science-­‑basedmeasures. The mathof it tells us that we’re actuallytapping intoone underlying idea. The math ¡doesn’t tellus what that idea is, but what we’re measuringis a person’s self-­‑concept as a managerof theirownhealth. Andit may not be conscious on ¡the individual’s part, but that’s kind ¡of what they’re telling us in ¡answering these questions. At this point the measure’s been ¡translated ¡intotwenty-­‑three different languages and ¡we have been ¡able toevaluate the psychometricproperties of about half of those translations. Andsowhat we see isthat concept itselfis robust andseems toworkacross culture andlanguage.

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Atthis pointthereare over 200 publicstudiesthatquantify patientactivation ¡and ¡what we see, generally,is that prior activated individualsaremorelikely to engagein positive behaviorsand ¡havebetter health ¡outcomes.

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Just to give you an example of how it translatesinto behaviors,wehavelooked at the percentage of peopleat each level of activation engagein behaviors.Thisisthe behavioral domain ¡of managinghypertension:“Do you ¡takeyour medication ¡as recommended,know whatyour blood pressureshouldbe?”astaking moreownership; monitoring, thatis, beingmore proactive;and ¡keepinga diary,even ¡moreso. Looking at lots of behavioral ¡domainswesee thiskind of stair

• ­‑step approach wherethehigher

activated aremore likely to engagein the behavior and theless activated, less likely to. But we also saw that as the behaviorsbecome moredifficult,requiresustained ¡action, less people in all the levels actually down then.

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Here’s howpeople behavein ¡the medical encounter.Howdo you ¡get a new prescription? Do you ¡read ¡aboutsideeffects? Do you ¡bringalist of questionsto your

• ffice visit? When ¡you ¡don’tunderstand,areyou ¡persistentin ¡askinguntil you ¡do? And ¡

do you ¡look at the doctors’qualificationswhen ¡choosinga new doctor?

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Whatwe saw was that the higher activated ¡did ¡most of these behaviors,butthe others were moreof a stair-­‑step approach.So after lookingatlots of these behavior mapsand lookingat who doeswhat, what we came away with was the insightthat a lot of the behaviorsthatwe’reasking peopleto do areonly doneby this highestlevel of

• activation. So when ¡we focuson ¡complex and ¡difficultbehaviors,firstand ¡only,maybe

we’re discouragingthosewho areless activated. And ¡when ¡we give peopletoo much ¡ information or suggesttoo many changes arewe discouragingtheleastactivated and, essentially, are we setting them up for failure.Whatwewant to do,really,is set people up for success. So what we took away fromthiswas let’s start with behaviorsthatare morefeasible for peopleto takeon, and ¡that mightmean ¡breakingthem down ¡into small steps, and in doingso we can increase the opportunity forpeopleto experience

• success. And whatwe have observed isthat when people do experiencesuccess, even

if there’rejustsmall steps, their motivation goes up.And then they’remoreready to take on that nextchallenge. So thiswas all sortof empirical,lookingat the data and thinkingaboutwhatdoes this mean? How should we proceed? I am goingto jump ahead hereto some of the research on howthis relateto outcomes.

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This isa study that was published ¡afew yearswherewe wereworkingat the large delivery system,where they werecollecting patientactivation scoresfrompatientsthat went into the electronic medical record.Wehad ¡the opportunity to seehow doesthe patient activation scorerelate to all ¡of the quality metrics and the electronicmedical ¡ record? Thisiscontrollingfor age,income, gender and chronicillness. It is only telling us whatwas statistically significant.It isnot tellingus the magnitudeof the relationship.Buteverythingisin the expected direction.So peoplewho are more activated aremore likely to get screenings,they’re less likely to beobese, less likely to be smokers,less likely to havecostly utilization and to havetheir clinical ¡indicators within ¡rangefor most of these measures. Later we had ¡the opportunity to follow peopleover time in the same delivery systemand here we can see a little bit more aboutthe magnitudeof the relationship.

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We’relookingatthat 2010 PAMscorepredictingoutcomesattwo years later It is comparingpeople ¡who are ¡at level one ¡to the ¡other three ¡levels. And,for example,if you look at the PHQ-­‑9-­‑-­‑ thatis, arepeople in normal rangein the PHQ-­‑9,they were ¡ abouttwo times more likely to bein ¡the normal rangetwo yearsago that had ¡a PAM scorethat was a level four.So that’s how you ¡would interpretthis.So you still see that kind of stair -­‑step even though this is multivariateanalysiswe’recontrollingfor all the thingsI mentioned before.

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Then we were ableto actually link this with cost. Thisanalysisis a little bit different. Here we looked at changesin PAMscorerelated to changes in cost and we saw people who were movingu in ¡their PAMlevel and ¡peoplewere movingdown.Their dollar amountcosts were movingin ¡the same direction as their PAMscorewas moving.So this ¡is ¡a 2-­‑year time frame and,basically, whatyou see is thatif they were at level four both ¡time periodsand ¡if they were at level one or two both ¡time periods,those are their cost differences.And all of the groupsin between weremovingup or they were movingdown ¡and ¡their costs were consistentwith ¡that direction.And,again,this is a multivariatecontrollingfor all ¡thevariablesthat werein the previousanalysis.

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After controlling for thesethings we saw almost a $2,000 costdifferential between patients who stayed ¡high ¡and ¡those who stayed ¡low. That’s a 2

• ­‑year period.And ¡this

representsa 31%percentcost differential.People ¡alwaysask me, “Well,why do you haveall those controlsand ¡then ¡you ¡can’t tell what the real differenceis?” Well,the real difference ¡is much bigger because ¡we ¡removed the ¡effects of health status, et

• cetera. Wealso knowthat it is possibleto increaseactivation level, butit takes a kind of

differentapproach.

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If we want patientsto feel ownership and to be partof the process, then we haveto make them partof the process.And ¡we haveto think aboutthis as a kind ¡of capacity buildingeffort.Becausethat’s what’s happeningover thesedifferentlevels.So it representsa paradigmshift.it isnot justtelling patients whatto do and lookingfor their compliance. The focus ison developingcompetence and skillsand notsimply the transfer of ¡information.

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Atthis pointthereare 50 published ¡studiesthatused ¡the PAMas outcome measure with ¡the intervention ¡studies.And ¡wedo see that many of them do resultin ¡increases in activation. And I will talk a little bit aboutthose.

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Oneof the moreeffective ways isjust simply to tailor supportto the patient’s level of

• activation. So essentially, meet them where they are and ¡work with ¡them to find ¡goals

that they careaboutthat are realistic for themto achieve. So I am goingto say a few wordsaboutwhatdelivery systems aredoinghere,because they’re doingsome pretty innovativethings.

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Many arelookingat the PAMscoresas kind ¡of a vital sign ¡that you ¡need ¡to understand ¡ wherethe patientis comingfromand ¡then ¡you ¡can ¡tailor your supportand ¡theway that you provideeducation and coaching.Wealwayslook at a population througha clinical lens, butsome are addingkind of a behavior lensto this clinical lensin ¡the form

• f the patientactivation ¡measure.The pointis to think aboutmoreefficient use of

resourcesby targetingthose who actually need more help and it is not alwaysbecause

• f their disease, butit is often ¡because they don’thavethe self-­‑management ¡skillsthat ¡

they need. Some ¡are ¡lookingat thisas an intermediate ¡outcome ¡of care.That is, patients who aregetting good ¡care should ¡actually be gainingin ¡their ability to self-­‑ manage and ¡we can ¡measure that and ¡we should ¡bepayingattention ¡to that. And ¡now some are usingit as a way to assess provider performance.And,in fact,the New York State district programsaysthey’regoingto use it as aperformancemetric. So arethey movingthe needle on ¡patient activation ¡for the clinic or the provider level? And ¡they haven’tsaid ¡exactly how they’regoingto do that, butthat’s what they’resaying.

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Here isa very simplified ¡version ¡of segmenting the population ¡usingthatclinical and ¡ behavioral lens.Wehavejustfour cells -­‑-­‑ disease burden,high ¡and ¡low,and ¡PAMlevel. Wedichotomize,“high” and ¡“low” to think abouthow do you useyour resourcesmore

• effectively. So,people with ¡high ¡disease burden ¡and ¡lowPAMscores:if they’renot

already in ¡trouble,they’regoingto be in ¡troublesoon.They’remorepassive abouttheir health, so they may notcome in.So we need ¡to use moreactive outreach ¡and ¡more

• contact. For those who are higher activated,use other kindsof resourcesbecause

these ¡patients are ¡more ¡ready to use ¡information -­‑-­‑ electronicresourcesand other kindsof community supports.Thereareseveral groupsthataredoingthis now.We don’thavethe resultsof their work,but it is a way to think aboutbeingmoretargeted ¡ in your resources.Therearemany, likethe National Health Service in England that are tryingthisapproach.

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Whatarethe implications for all of this for supportingtheuseof information ¡and ¡ choice? You can think about it for theclinical encounter for promotingtheuseof evidence and ¡implementing shared ¡decision ¡making.So let’s justgo back and ¡review the ¡less activated patients. We ¡knowthat they’re ¡more ¡passive.We ¡do knowthey’re ¡ less likely to seek out information on their own and Ithink part of this isrelated to how they understand their role.If they don’tthink this is their job, then they’re notgoingto spend their energy lookingfor this.

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And ¡in ¡interviewswith ¡peoplewho are less activated, if you ¡ask them somethingabout howthey manage their health, they’remore likely to say,“Oh, my doctor handlesthat. it is notmy job.” So it is hard to interestpeople in information and newskillsif they don’tthink it is their job. They are easily overwhelmed.They have lowconfidence and ¡ poor problemsolvingskills.They may be in ¡denial of their health. Peoplewho areless activated ¡aremore likely to say,“They say I havediabetes.” They don’t actually own ¡it.

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So what does thismean? Firstof all, think aboutpeopletransitioningoutof the hospital and ¡havereams of information ¡they’vebeen ¡given ¡abouthowto handletheir condition in the post-­‑hospital period.If they are overwhelmed,help ¡them prioritize. Help ¡them see what it is that they can ¡do that’s most importantand ¡that’s maybe what’s ¡second-­‑mostimportant.I think,generally,in ¡this processhelpingthem to see howimportanttheir roleis and ¡also whatthe roleof the caretaker is. Think aboutit kind ¡of foundational issuesthatwe can ¡build ¡on ¡over time. Ithink aboutthis as so many things,like learningto swim. You don’tthrowpeopleinto the deep end of the pool.For most it is notgoingto work outthat well. It is a process. You know,you haveto feel comfortableto put your facein the water beforeyou can float. And so this too,is a buildingprocess.Ithink becoming an ¡effective self-­‑manager islike that. So we need to think aboutthat and how we supportpeopleand onefoundational issueis“Your roleis important.You havesomething importantto contributehere.”So, think abouta more high ¡touch ¡delivery mode with ¡less activated ¡patients and ¡more high ¡tech ¡modes with ¡ less activated patients.

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I got a call fromsomeonein a largedelivery systemwho said,“We’retryingto roll out shared decision-­‑makingacrossour system,” and ¡then ¡she said, “but, you ¡know,I don’t think the less activated patients areready for it.” And I thoughtaboutthatand I said, “Oh,I bet that’s right.”And then the nextweek I was in ¡the U.K. and I sat down with peoplefromthe NHS Kidney Foundation ¡and ¡they wereshowingme the resultsof their study wherethey looked at the impact of shared decision-­‑makingon activation scores. And ¡they had ¡actually broken ¡itu by levels of activation. And ¡they said, “See, it really helped ¡everyone.Oh,except the less activated.” And ¡Ithought,“Oh,yeah. They’renot ready,”because they don’tthink they havesomething to offer here. And so maybethey just need some ¡help to get ready.

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So if we think abouthow we tailor the provision ¡of information,Ithink we can ¡actually increase the likelihood thatpatientswill access and use evidence and I think we can also improvepatientexperienceswith ¡that. And ¡Ithink we can ¡increase the likelihood ¡ that patients will do their partin the care process.

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