Informing and Involving Patients to Improve the Quality of Medical Decisions(1)

At the Intersection of Health, Health Care and Policy

doi: 10.1377/hlthaff.2011.0003

, 30, no.4 (2011):699-706Health AffairsInforming And Involving Patients To Improve The Quality Of Medical Decisions

Floyd J. Fowler, Jr., Carrie A. Levin and Karen R. SepuchaCite this article as:

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By Floyd J. Fowler Jr., Carrie A. Levin, and Karen R. Sepucha

Informing And Involving PatientsTo Improve The QualityOf Medical Decisions

ABSTRACT Good-quality care requires that procedures, treatments, andtests be not only medically appropriate, but also desired by informedpatients. Current evidence shows that most medical decisions are made byphysicians with little input from patients. This article describes issuessurrounding informed patient decision making and the steps necessary toimprove the way decisions are made. Creating incentives for providersand health care organizations to inform patients and incorporatepatients goals into decisions is critical. Patient surveys are needed tomonitor the quality of decision making. Health information technologycan help by collecting information from patients about their symptoms,how well they understand their options, and what is important to them,and sharing that information with providers. We review public andprivate developments that could facilitate the development of tools andmethods to improve patient-centered care.

Good-quality care requires that pro-cedures and tests be medically ap-propriate and executed safelytwo criteria that have often beenthe primary focus of quality im-

provement efforts. However, appropriatenessalone does not mean that the care is necessaryor desired by the patient. High-quality medicalcare must go further and ensure that every pro-cedure, treatment, and test ordered also meetspatients goals for care. High-quality medical de-cisions require that patients be fully informedand involved in the decision-making process.The importance of involving patients in deci-

sionmakingwas underscored as early as 1982 bythe Presidents Commission for the Study of Eth-ical Problems in Medicine.1 The proposition hassince been reaffirmed and deepened, with sub-sequent publications and the support of organ-izations such as the Institute of Medicine,2,3 theNationalQuality Forum, and theAmericanMedi-cal Association.4

We address the questions of why shared deci-sion making is so important to the quality of

health care and what steps need to be taken toensure that patients routinely have a voice in thedecisions about their care.

Shared Decision MakingShared decisionmaking recognizes that medicaldecisions require interaction between patientsand their doctors; that decisions be informedby the best available clinical evidence; and thatdecisions reflect the individual patients well-considered goals and concerns.5,6 Identifyingthe medical problem and laying out the reason-able options are primarily the responsibility ofthe physician. Patients have the primary respon-sibility for identifying and conveying their goalsand concerns relevant to the decision they arefacing. Patients and physicians each have impor-tant roles to play in the process and must bereceptive to each others input.To help illustrate the issues and trade-offs that

doctors and patients must consider in shareddecision making, we use the example of takinga statin to reduce elevated low-density lipo-

doi: 10.1377/hlthaff.2011.0003HEALTH AFFAIRS 30,NO. 4 (2011): 6997062011 Project HOPEThe People-to-People HealthFoundation, Inc.

Floyd J. Fowler Jr. ([email protected]) is a seniorscientific adviser to theFoundation for InformedMedical Decision Making, inBoston, Massachusetts.

Carrie A. Levin is director ofresearch at the Foundation forInformed Medical DecisionMaking.

Karen R. Sepucha is directorof the Health DecisionSciences Center,Massachusetts GeneralHospital, and an assistantprofessor of medicine atHarvard Medical School, inBoston.

April 2011 30:4 Health Affairs 699

The Voice Of Patients


protein (bad) cholesterol. There have been nu-merous clinical trials designed to assess the ef-fects of taking statins to reduce the rate of heartattacks and deaths from heart disease. The re-sults vary depending on themix of patients stud-ied and which drug is being tested. However, allstudies agree that people who have not had aheart attack or have no notable heart risk factorsother thanelevated cholesterol benefitmuch lessfrom taking statins than those who have heartdisease.For example, if 200 people with elevated cho-

lesterol levels, but no other indications of heartdisease, took a statin every day for five years, oneof them would avoid a heart attack or death (199would be unaffected). In contrast, if 200 peoplewith a history of heart disease or heart attacktook a statin for five years, between two andten would avoid a heart attack or death, depend-ing on their clinical profiles.7,8

With or without heart disease, there is a deci-sion to be made about whether or not to take astatin to lower cholesterol. The best option can-not be determined without the patients input todetermine how much weight to assign to eachcomponentbenefits, risks, and financial costsof taking statins or incurring other health-related costs.This example is typical of the kinds of trade-

offs that arise in the case where medication is atreatment option. But there are trade-offs foralmost all medical decisions, including surgeryandcancer screening. Forexample, patientswitha herniated disk that causes back and leg painhave to weigh the quicker fix that surgery maybring against the risks of surgery and the like-lihood that the back will heal itself in time with-out surgery. Additional considerations includethe cost of the surgery, the time away from workor other activities, and limitations on activitiesunder either option.9

Patients differ from one another, and oftenfrom their physicians, in the weights they assignto factors that bear on a decision. To get thedecision that best serves the patient, it is neces-sary to have the patient informed and involved inthe decision-making process.Of course, a consequence of giving patients an

informed voice is that they might not alwayschoose the safest, most effective, or most cost-effective options. Thus, there are implicationsfor both physicians and health plans when pa-tients are more actively involved in medical de-cision making.For example, it may be frustrating to physi-

cians when recommendations that they believein, or that are supported by the evidence, are notchosenby thepatient. (Of course, patientsdonotalways followphysicians recommendations any-

way.) Guidelines for care, therefore, need to beadjusted to allow forpatientspreferences so thatphysicians are not penalized when patientschoose care options that are not favored by theevidence.Similarly, health plans may want to limit cov-

erage of some treatments that patients want ifthe evidence does not support the treatments.Its worth noting, however, that experimentswith informing patients facing surgical deci-sions find that, on average, informed patientstend to opt for less surgery than patients inusual care.10 Thismeans that at least in the caseof surgery, more-informed patients may lean to-wardmore conservative treatmentoptions thatcost less.Whatever choices patients make, a coreprinciple of shared decision making is that thevalue of benefits and risks should be determinedby those who have to live with them.The remainder of this article explores the steps

needed to ensure that patients are routinely in-formed and involved in decisions about theirmedical care, so that high-quality medical deci-sions result.

The ProblemFor patients to have a meaningful say in theirmedical decisions, three essential conditionsmust be met. First, they have to be informed.Specifically, they have to be given an objective,unbiased presentation of reasonable options toconsider and the pros and cons of those options.Second, once informed, patients have to spendsome time to consider their goals and concernsand how each option is likely to play out withrespect to those goals and concerns. Third, theyhave to have an interaction with their providersinwhich their goals and concerns are shared andincorporated into the decision-makingprocess.11

Unfortunately, the information we have aboutthewaymedical decisions aremade in theUnitedStates makes it clear that those steps do nothappen very often. The 2007 DECISIONS surveycarried out by the University of Michigan pro-vides relevant evidence about the quality ofcommon decisions involving medical care.11

A national sample of 3,010 adults older thanage forty were asked whether they had talkedwith a doctor in the preceding two years aboutany of nine decisions: three cancer screeningdecisions (for breast, colon, or prostate cancer);three long-term medications (for depression,high blood pressure, or elevated cholesterol);and three surgical procedures (for back pain,cataracts, or hip/knee replacement). For up totwo such decisions they had confronted, respon-dents were asked a series of questions aboutwhat they knew, their goals, and their interac-


700 Health Affairs April 2011 30:4


tions with providers.11

With respect to the first essential step, beinginformed, respondents were asked four or fivequestions, depending on the decision, aboutthings that clinical experts thought patientsshould know before making an informed deci-sion. For example, in the case of medication forelevated cholesterol, patients making a decisionshould know the commonside effects of the drugand how much their cholesterol readings differfrom normal. The median number of correctanswers was one for eight of the nine decisions.To provide a sense of the problem, of those whohadmadeadecisionabout taking statins forhighcholesterol, only 57 percent knewwhat a normalcholesterol level was, and only 17 percent couldname the most common side effect of statins.12

Patients reports in the survey about their in-teractions with health care providers did notsuggest a cooperative or shared decision-makingprocess. For themost part, patients reported thattheir physicians framed the decision in favor ofthe intervention being discussed, instead of pre-senting it as just one option among several, in-cluding no treatment.Across all nine decisions, 7885 percent of

respondents reported that physicians made arecommendation.Moreover, when a recommen-dation was made, it generally was reported ashaving been in favor of having surgery (recom-mended about 65 percent of the time for all threetypes of operations), taking medication (recom-mended 8693 percent of the time), or havingscreening (recommended 9499 percent).13

Consistently, respondents reported that physi-cians tended to discuss the reasons to have theintervention or test much more than they dis-cussed reasons why patients might not want to.Discussions of why patients might not want tohave a cancer screening test were particularlyrare; only 2032 percent reported such discus-sions. Perhapsmost important, for five of the sixnonsurgical decisions, amajority of respondentsdid not think they had been asked to express anopinion about what they wanted to do (the loneexception was for decisions involving medica-tion for depression).13

There are some limitations to the DECISIONSstudy. The major one is that it depends on pa-tients recall, and their reports can be in error.However, Clarence Braddock and colleagues ex-amined recorded interactions between patientsand their doctors, and they reported on the ex-tent to which patients and providers engaged inshared decision making. Their results look verysimilar to the picture painted by the DECISIONSsurvey, suggesting large gaps in the quality ofdecision making.14

Using Decision AidsPhysicians typically do not have time and oftenlack the skills to present a complete, balancedpresentation of the pros and cons of reasonablemedical options. To address the problem of pa-tients not being given complete, objective infor-mation, one obvious step is for providers to givetheir patients so-called patient decision aids:high-quality decision-support material to sup-plement the office visit. The information canbe in audiovisual form or on paper; it can bedelivered as a hard copy or made available onthe Internet. It is important that the informationbe unbiased, complete, and presented in a formreadily understandable by a wide range of peo-ple. In fact, there is now considerable evidence,based on more than fifty-five randomized clini-cal trials, that when patients are given good-quality decision aids, they are more informedand participate more in decision making thando patients in usual care.10

Exposing patients to good information,although highly valuable, is not enough. Oncepatients have had an opportunity to learn abouttheir options, it is also necessary to have an in-teraction between providers and patients thatincorporates patients goals and concerns intothe decisions that are made.

Using Health InformationTechnologyInitiatives to identify meaningful uses for healthinformation technologymayoffer one importanttool for facilitating high-quality decision-mak-ing processes. To date, most of the initiativeswith information technology have focused onmaking the information currently stored inmedical records available electronically. Pa-tients medical records are mainly a repositoryfor providers notes, tests, treatments orderedand completed, and the results. In addition,some electronic records aim to improve clinicaldecisions by embedding into the system clinicalguidelines and programming reminders forphysicians to implement effective care.Trigger Delivery Of Information A way in

which health information technology can im-prove decisionmaking is to trigger the deliveryof relevant health information directly to pa-tients at the point when they need to think aboutmaking a medical decision. In the primary caredivision at Massachusetts General Hospital,when providers enter a new problem from a listof problem conditions and symptoms into a pa-tients electronic health record, a reminder iconappears next to the problem to indicate the avail-ability of a relevant decision aid.With one click ofthe mouse, a decision aid can be prescribed and



is mailed directly to the patient. A note is auto-matically generated for the health record indicat-ing the delivery of the aid.15

Collect And Store Information Health in-formation technology can also be used to collectand store information provided by patients.Three specific kinds of information in this con-text could improve the quality of decision mak-ing and should be considered in the design ofelectronic health record systems to augment cur-rent uses.DECISION WINDOWS: First, information is

needed that documents symptom severity andidentifies potential decision windows. One ofthe challenges to providing good decision sup-port is that it is difficult to predict or knowwhena patient has a decision to make. Such decisionwindows are triggered when certain symptomthresholds are reached.One excellent useof elec-tronic record systems would therefore be tocollect and track self-reported symptom severityfor patients who have symptom-driven condi-tions such as arthritis, back pain, benign en-larged prostates, knee pain, or benign uterineconditions. For example, patients at the SpineCenter at Dartmouth-Hitchcock Medical Centerfill out a standard questionnaire about theirsymptoms each time they visit the clinic. Theresults are tracked, enabling patients and doc-tors to see how symptoms such as pain and func-tional limitations are changing over time. Thistype of systematic documentation enables tar-geted decision support at appropriate times.WHAT PATIENTS KNOW: Another valuable

use of technology is to collect information aboutwhat patients know and do not know about theirmedical conditions and treatment options.Whenpatients face a decision, they canbe asked a shortset of questions to assess whether they under-stand the key issues related to the decision. Ifcollected during the decision-making process,this information could enable providers to iden-tify critical gaps in patients knowledge that theycan correct or fill before a decision is made. Ifcollected after the decision-making process (forexample, at the time of or shortly after surgery),this information could be used to measure howwell providers were informing their patients andprovide a basis for quality improvement efforts.WHAT PATIENTS WANT: There is a similar

need to systematically collect and record pa-tients priorities relevant to the decision theyare facing. For decisions with two or more op-tions, there are usually a relatively small numberof goals and concerns that are likely to be mostrelevant to the choice. If this is done during thedecision-making process, asking patients abouttheir goals and concerns helps them think thesematters through. Sharing their goals and con-

cerns with providers helps to ensure that physi-cians know patients preferences before a deci-sion is made. If patients are asked again abouttheir goals and concerns after the decision-mak-ing processfor example, shortly after surgeryor some other kind of interventionthe infor-mation can be used to assess how well the treat-ment decisions reflected the priorities of the pa-tients and, likemeasures of knowledge, form thebasis for quality improvement efforts.

Surveys To Assess PatientsKnowledge And GoalsIt is possible to develop short survey instrumentsto assess patients knowledge and goals. Deci-sion-quality survey instruments have been devel-oped and evaluated for a dozen commonmedicalconditions, including treatmentof osteoarthritisand breast cancer.16,17 For example, before aphysician works with a patient who has a herni-ated disk to make a treatment decision, a surveycould be used to determine whether the patientknows the following: (1) surgery and con-servative management are both reasonable op-tions; (2) for most people, surgery will relievepain faster than nonsurgical approaches; (3) theback will probably heal itself over time, and thepain will be relieved even without surgery;(4) surgery relieves pain about 80 percent ofthe time; and (5) for most people, doing normalactivitieswill notmake the herniated diskworse.A guide to patients goals and concerns could

include responses to the following: (1) Howmuchdoesback and legpain interferewithdoingthings that are important to thepatient? (2)Howimportant is it for the patient to have quick painrelief? (3)Howdoes thepatient feel abouthavingsurgery, including the risksof complications anddealing with recuperation? (4) How would thepatient feel about living with pain for an ex-tended period while the back heals on its own?These applications are not hypothetical or

unrealistic. For the past five years, breast cancerpatients at the Dartmouth-Hitchcock MedicalCenter have completed decision-quality instru-ments that assessed their knowledge and goalsafter viewing a decision aid and before they metwith a surgeon to discuss treatment. Their an-swers are available to the surgeon so that thesurgeon can correct misinformation and makesure that the discussion of treatment optionstakes into account what is most important tothe patient.18

Accountability And QualityHaving good-quality decision aids available isvaluable. Having good technological support




for collecting and sharing information betweenphysicians and patients can also be an importantaid to progress. However, sharing decisions willalso represent a real culture change for mostphysicians andpatients. There aremany compet-ing demandsonproviders time, and their result-ing need to prioritize often means that someactivities do not get their full attention.Having providers check off boxes indicating

that patients have been informed and involvedwill not necessarily constitute credible evidencethat patients have really been informed and in-volved in decisions. Even with good intentionsand supportive resources, itwill be easy formanyimportant decisions to be made in the old-fashioned way: Patients will not be informed,and there will be little patient-centered discus-sion of what to do; physicians will tell patientswhat they think they should do, and patients willdo it.For these reasons, inorder to improvedecision

making, it is also essential to have a feedbackmechanism that provides reports on the qualityof the decision-making process.There are fourkey elementsneeded tomeasure

the quality of the process of decisionmaking: theextent to which all the reasonable alternativeswere presented for consideration; the extent ofdiscussion of the reasons one might want anintervention; the extent of discussion of the rea-sons one might not want an intervention; andthe extent to which the patients views and pref-erences were included in making the decision.The most promising mechanisms for measur-

ing the quality of the decision-making processare the surveys conducted as part of the Con-sumer Assessment of Healthcare Providers andSystems (CAHPS). These are standardized sur-veys of patients experiences with ambulatoryand facility-level care developed by the Agencyfor Healthcare Research and Quality and carriedout annually by most health plans. The plansthen submit the results to the National Commit-tee for Quality Assurance as part of the processfor getting a quality assurance rating.19 Thehealth plan survey does not currently includequestions about shared decision making; nordoes it provide data about individual providersor provider groups. However, two other surveysunder the CAHPS umbrella have the potential toprovide the information that is needed.TheNational Committee forQualityAssurance

and CAHPS collaborators are testing a new in-strument designed to evaluate how well primarycare providers meet the standards for a patient-centered medical home.19 This instrument in-cludes a series of questions that specifically ad-dress how decisions are made and that wereadapted from the questions used in the

DECISIONS survey mentioned earlier.11 It re-mains to be seen how and howwidely this surveywill beused.However, thepotential exists for thesurvey to provide solid information about theextent to which shared decision making is hap-pening inprimary care practices. The effortsmaylead to incentives to fund such surveys to qualifyfor certification as a medical home.Another option to provide feedback on the

quality of surgical decision making is the Hospi-tal CAHPS, or HCAHPS, surveys.19 The basicHCAHPS survey instrument coversmany aspectsof the inpatient experience. A survey specificallyfor surgical patients has been vetted through theCAHPS approval process. The surgical surveyprobes how decisions are made. Including thatsame series of questions in the HCAHPS surveyswouldprovide feedbackon thequality of surgicaldecisions at the hospital level.A downside of the current HCAHPS survey

design is that it does not include day surgerypatients, who constitute an important part ofthe surgical population.Adding samples of thosepatients to the HCAHPS design wouldstrengthen the potential of the surveys to assesshow well the decision-making process is car-ried out.

How Can We Make Change Happen?Although altering the way decisions are madewould constitute a profound change in the prac-tice of medicine, many elements already in placecould help make the transformation happen.Some of these, such as expanding the role ofhealth information technology, were discussedabove. Belowwe discuss several more public andprivate developments that could contribute toefforts to improve medical decision makingthrough greater patient involvement.Affordable Care Act Shared decision mak-

ing is among the delivery system reforms in-cluded within the new Center for Medicare andMedicaid Innovation, which was authorizedunder section 3021 of the Affordable Care Actof 2010 and further amended under section10306 of the Health Care and Education Recon-ciliationAct of 2010. The purpose of the center isto evaluate payment and service delivery innova-tions aimed at reducing costs while maintainingor improving quality.A variety of health care delivery models will be

piloted under the new centers initiatives. One ofthemodels to be tested includes helping patientsmake informeddecisionsbypayingproviders forusing decision aids. The innovation center has$10 billion appropriated over the next decade totest and implement newmodels such as this one.Wearehopeful that at least someof thepilotswill



feature the routine use of decision aids and de-cision support from providers.A shared decision-making program was au-

thorized, but not appropriated, under section3506 of the Affordable Care Act. Specifically,the legislation establishes a program at the De-partment of Health and Human Services for thedevelopment, testing, certification, and promo-tion of patient decision aids to help patients,caregivers, and physicians incorporate patientspreferences and values into medical care plans.Working to ensure that funding is appropriatedfor this programwould greatly advance the qual-ity of decisions.Another unfunded component of the Afford-

able Care Act is its quality provisions (section3013), which authorize the secretary of healthand human services to award grants and con-tracts for purposes of developing, improving,updating, or expanding quality measures, withpriority on quality measures that assess the useof information in shared decision making andthe patient-centeredness of care, among otherthings. Funding these provisions would helpspur the development and acceptance of patientinvolvement as an integral part of the quality ofmedical care.Comparative Effectiveness Research The

Patient-CenteredOutcomes Research Institute isfunded under section 3590 of the AffordableCare Act to conduct research on the comparativeeffectiveness of various medical interventions.Such information provides the foundation ofshared decision making by developing the evi-dence-based information that patients and pro-viders need to make the best decisions.In addition to supporting the goal of develop-

ing a sound evidence base for decision making,the institute could further help the cause ofpatient-centered decision making by supportingresearch in several areas, including improvingpatient decision aids and advancing our under-standing of how best to translate medical evi-dence for patients and physicians.Delivery Systems The patient-centered

medical home has emerged as potentially anew standard for primary care, and shared deci-sion making is a key element. Payers should beencouraged to create incentives for primary careproviders to deliver care that meets the patient-centered medical home standards and supportsshared decision making.Accountable care organizations are also

emerging as a part of the future of health care.They create the opportunity to expand shareddecision making beyond primary care into spe-cialty care and hospital systems. They have yet tobe fully defined. One important step would be toincorporate the standards for shared decision

making into the definition of an accountablecare organization.State Role As noted above, under the Afford-

able Care Act, the federal government will haveopportunities to play a leadership role in devel-oping innovations that promote patient involve-ment inmedical decisionmaking. States can alsoprovide leadership in this area and have alreadybegun to do so.Lawmakers in Washington State, for example,

recognized that traditional approaches to in-formed patient consent were not adequate interms of incorporating patients feedback intomedical decisions. This recognition was the im-petus for a 2007 law that promotes the use ofshared decision making with approved decisionaids as a way to better inform patients and en-gage them in health care decisions.20 A demon-stration involving several health plans andhealth providers is now under way in the stateto help assess how shared decision making af-fects patient choices.Other states are considering legislation in this

area as well.20 This is a positive sign, and furtherstate experimentation should be encouraged, es-pecially during the formative stages of thismove-ment. The federal government should take noteof these efforts as the science matures to ensurethat knowledge gained from them is incorpo-rated into federal policies and that best practicesare applied consistently, rather than hetero-geneously across states.Surgery And Hospital Care Although many

more decisions aremade in primary care than inspecialty care, the impact of surgical decisionson patients and medical expenditures is signifi-cant. The Centers for Medicare and MedicaidServices has already established a routine surveyof discharged patients as a way of adding patientexperience to the criteria by which hospitals areevaluated (Hospital CAHPS).19 The addition of abrief survey module about the decision-makingprocess for patients who had surgery might beone of the best and easiest ways to increase theextent to which patients are informed and in-volved in decisions about their medical care.

ConclusionThe starkest example of a medical error is tooperate on the wrong patientfor example,when a surgeon performs back surgery on thepatient in bed A when it is the patient in bed B inneed of the procedure for a herniated disc. Wewould argue that it is equally bad to perform anyoperation on a patient who, had he or she beeninformed and given a voice in the decision,would not have chosen to have the operation,even if it were a medically appropriate choice.




That, in our view, also is essentially operating onthe wrong patient. The right patients for sur-gery are the ones who are clinically appropriateandwhomade an informed choice that surgery isthe best way to treat their condition. The way toavoid such medical errors is to make sure thatevery patient is fully informed and involved inmaking the important decisions about his or hermedical care.We argue that among the most important re-

forms needed to improve medical care are thosethat would inform and amplify the voice of thepatient when medical decisions are made. Tomake that happen, patients facing decisionsshould routinely be given decision-support ma-terials that objectively lay out the options inclear, accessible terms. Reimbursement by pub-

lic and private payers needs to cover the cost ofproviding decision-support materials and thecost of physicians meeting with patients to de-cide what decision will best serve patients inter-ests. In addition, the technology systems inmedical settings should be designed to collectinformation from patients about the decisionsthey are facing, their health status, what theyknow, and what they care about.Finally,weneed to collect systematic data from

patients about decision quality and the processof decisionmaking towhich theyareexposed.Allof these elementsthe tools and surveysarecurrently in routine use in select organizations.Now, we need a commitment to putting theseelements in place on a widespread basis.

Floyd Fowler and Carrie Levin areemployed by the not-for-profitFoundation for Informed MedicalDecision Making. Karen Sepucha has

research grants from the foundation.Through a commercial agreement withHealth Dialog, a for-profit company,decision aids created jointly by Health

Dialog and the foundation aredistributed as part of services providedthrough health plans and employers topatients facing medical decisions.

NOTES

1 Presidents Commission for theStudy of Ethical Problems in Medi-cine and Biomedical and BehavioralResearch. Making health care: theethical and legal implications of in-formed consent in the patient-practitioner relationship. Washing-ton (DC): Government Printing Of-fice; 1982.

2 Hurtado MP, Swift EK, Corrigan JM,editors. Envisioning the nationalhealth care quality report. Washing-ton (DC): National AcademiesPress; 2001.

3 Institute of Medicine. Crossing thequality chasm: a new health systemfor the 21st century. Washington(DC): National AcademiesPress; 2001.

4 American Medical Association. 2010strategic issues: getting the most forour health care dollars [Internet].Chicago (IL): AMA; 2010 [cited 2011Mar 14]. Available from: http://www.ama-assn.org/ama/pub/about-ama/2010-strategic-issues/health-care-costs.shtml

5 Mulley AJ. Assessing patients util-ities: can the ends justify the means?Med Care. 1989;27(Suppl 3):S26981.

6 Charles C, Gafni A, Whelan T.Shared decision-making in themedical encounter: what does itmean? (or it takes at least two totango). Soc Sci Med. 1997;44(5):68192.

7 Hadler NM. Worried sick: a pre-scription for health in an overtreatedAmerica. Chapel Hill (NC): Univer-sity of North Carolina Press; 2008.

8 Rifkin E, Bouwer E. The illusion ofcertainty: health benefits and risks.New York (NY): SpringerPress; 2007.

9 Weinstein JN, Lurie JD, TostesonTD, Tosteson AN, Blood EA, AbduWA, et al. Surgical versus nonop-erative treatment for lumbar discherniation: four-year results for theSpine Patient Outcomes ResearchTrial (SPORT). Spine. 2008;33(25):2789800.

10 OConnor AM, Bennett CL, Stacey D,Barry M, Col NF, Eden KB, et al.Decision aids for people facinghealth treatment or screening deci-sions. Cochrane Database Syst Rev.2009;3:CD001431.

11 Zikmund-Fisher BJ, Couper MP,Singer E, Levin CA, Fowler FJ, ZinielS, et al. The DECISIONS study: anationwide survey of US adults re-garding nine common medical de-cisions. Med Decis Making. 2010;30(5 Suppl):S2034.

12 Fagerlin A, Sepucha KR, Couper MP,Levin CA, Singer E, Zikmund-FisherBJ. Patients knowledge about 9common health conditions: theDECISIONS survey. Med DecisMaking. 2010;30(5 Suppl):S3552.

13 Zikmund-Fisher BJ, Couper MP,Singer E, Ubel PA, Fowler FJ, LevinCA, et al. Deficits and variations inpatients experience with making 9common medical decisions: theDECISIONS survey. Med DecisMaking. 2010;30(5 Suppl):S8595.

14 Braddock CH 3rd, Edwards KA,Hasenberg NM, Laidley TL,Levinson W. Informed decision

making in outpatient practice: timeto get back to basics. JAMA. 1999;282(24):231320.

15 Barry M. Implementation of shareddecision-making in primary care atMGH: prescribing activity and pre-liminary patients survey results. Pa-per presented at: 4th InternationalShared Decision MakingConference; 2007 May 30June 1;Freiburg, Germany.

16 Sepucha KR, Levin CA, Uzogara EE,Barry MJ, OConnor AM, Mulley AG.Developing instruments to measurethe quality of decisions: early resultsfor a set of symptom-driven deci-sions. Patient Educ Couns. 2008;73(3):50410.

17 Lee C, Barry M, Cosenza C, DominikR, Levin C, Mulley A, et al. Devel-opment of instruments to measurethe quality of breast cancer treat-ment decisions. Health Expect.2010;13(3);25872.

18 Collins ED, Moore CP, Clay KF,Kearing SA, OConnor AM, Llewel-lyn-Thomas HA, et al. Can womenmake an informed decision formastectomy? J Clin Oncol. 2009;27(4):51925.

19 Agency for Healthcare Research andQuality. CAHPS survey products:CAHPS survey instruments [Inter-net]. Rockville (MD): AHRQ; 2010[cited 2011 Mar 15]. Available from:https://www.cahps.ahrq.gov/content/products/Prod_Intro.asp?p=102&s=2

20 Kuehn BM. States explore shareddecision making. JAMA. 2009;301(24):253941.



ABOUT THE AUTHORS: FLOYD J. FOWLER JR., CARRIE A. LEVIN &KAREN R. SEPUCHA

Floyd J. Fowler Jr.is a seniorscientific adviser tothe Foundation forInformed MedicalDecision Making.

Floyd Fowler and his coauthorspropose steps to eliminate onebarrier to quality health care:namely, the failure to educatepatients fully about their optionswhen they face decisions aboutprocedures, treatments, and tests.By default, the authors say, thatdeficiency leaves doctors asprimary decision makers, with littleinput from patientseven thoughit is patients who must live withthe consequences of those choices.Fowler says that in twenty-five

years of conducting interviews withpatients, he has learned that whenthey are fully informed, they oftenwould make different decisionsthan when they are not informedor when they delegate the decisionto doctors. There is no way doctorscan know what patients values are,or what their priorities are,without talking to them, he adds.Fowler is a senior scientific

adviser to the Foundation forInformed Medical DecisionMaking, a Boston-based nonprofitwhose mission is to amplify thepatients voice in health care

decisions. He was president of thefoundation during 200209. Since1971 he has also been a seniorresearch fellow at the Center forSurvey Research at the Universityof Massachusetts in Boston, and hewas the centers director forfourteen years.Fowler is the author or coauthor

of four widely used books onsurvey research methods. He alsohas been a major contributor toresearch on patient outcomes andhow patients are affected by thetreatments they receive. He has adoctorate in social psychology fromthe University of Michigan.

Carrie A. Levin isdirector of researchat the Foundationfor InformedMedical DecisionMaking.

Carrie Levin is director ofresearch at the Foundation forInformed Medical DecisionMaking, overseeing the design,collection, analysis, anddissemination of research. Hercurrent research interests includedetermining how medical decisionsare made, measuring decisionquality, and integrating the use ofdecision aids into routine clinicalcare. She received a doctorate in

health services research, policy,and administration with emphasison long-term care and healtheconomics from the University ofMinnesota.

Karen R. Sepuchais director of theHealth DecisionSciences Center,MassachusettsGeneral Hospital.

Karen Sepucha is director of theHealth Decision Sciences Center inthe General Medicine Division atMassachusetts General Hospitaland an assistant professor ofmedicine at Harvard MedicalSchool. Her research and clinicalinterests involve developing andimplementing tools and methods toimprove the quality of importantmedical decisions made by patientsand clinicians.Sepucha was the medical editor

for an award-winning series of fivebreast cancer patient decision aidsdeveloped by the Foundation forInformed Medical DecisionMaking. She has a doctorate inengineeringeconomic systems andoperations research at StanfordUniversity, with a focus ondecision sciences.




Informing and Involving Patients to Improve the Quality of Medical Decisions(1)

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