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Z. Evid. Fortbild. Qual. Gesundh. wesen (ZEFQ) 105 (2011) 271–276

The status of shared decision makingand citizen participation in IsraelimedicineTalya Miron-Shatz1,2,∗, Ofra Golan3, Mayer Brezis4, Gil Siegal3,5, Glen M. Doniger1

1Center for Medical Decision Making, Ono Academic College, Kiryat Ono, Israel2Wharton School of Business, University of Pennsylvania, Philadelphia, PA USA3The Unit for Genetic Policy and Bioethics, Gertner Institute for Epidemiology and Health Policy Research, Tel Hashomer, Israel4Center for Clinical Quality and Safety, Hadassah Hebrew University Medical Center, Jerusalem, Israel5Center for Health Law & Bioethics, Ono Academic College, Kiryat Ono, Israel

SummaryWhat about policy regarding SDM?Though informed consent and patients’ right to information are regulatedby Israeli law, there is a low level of formal activities focused on shareddecision making (SDM) in Israel. Further, there are few organized pro-grams to promote SDM among medical professionals or the public, andgovernmental support of SDM-related research is minimal.What about tools – decision support for patients?The Israeli government does not have a program on development of patientdecision aids.What about professional interest and implementation?Nonetheless, patients have begun to influence litigation in both for-mal and informal capacities, medical schools have begun to incorporate

courses for improving physician-patient communication into their cur-ricula, and the largest national health plan has initiated a plan to in-crease pubic awareness. Funding for researching and promoting SDM isnot centrally allocated, and studies show that despite the positive ef-fects of SDM, such an approach is infrequently applied in actual clinicalpractice, and initiatives to promote SDM (e.g., decision aids) are in theirinfancy.What does the future look like?In conclusion, though not actively promoting SDM at present, Israel, with itsgovernmentally regulated universal coverage with good access to high-levelservices possesses all the requisite elements for rapid, widespread advancesin SDM in future years.

Key words: Shared decision making, Israel, patient autonomy, informed consent, health care system, patient participation(As supplied by publisher)

∗Corresponding author. Talya Miron-Shatz, PhD, Founding Director, Center for Medical Decision Making, Ono Academic College, 104 Zahal St., Kiryat Ono, Israel. Tel.:+972 2 56 333 04; fax: +1 609 258 5974.E-Mail: [email protected] (T. Miron-Shatz).

Z. Evid. Fortbild. Qual. Gesundh. wesen (ZEFQ)doi:10.1016/j.zefq.2011.04.006 271


Partizipative Entscheidungsfindung und Bürgerbeteiligung im israelischenGesundheitswesen: eine Bestandsaufnahme

ZusammenfassungWie steht es mit gesetzlichen Regelungen zur PEF?Obwohl Informed Consent (Einwilligung nach Aufklärung) und das Rechtdes Patienten auf Aufklärung in Israel gesetzlich geregelt sind, gibt es kaumoffizielle Aktivitäten, in deren Zentrum die Partizipative Entscheidungsfind-ung (PEF) steht. Zudem existieren nur wenige organisierte Programme zurFörderung von PEF in der Ärzteschaft oder in der Öffentlichkeit, und auchdie staatliche Unterstützung für PEF-bezogene Forschung ist gering.Wie steht es mit PEF-Instrumenten – Entscheidungshilfen für Patien-ten?Die israelische Regierung unterhält kein Programm zur Entwicklung vonEntscheidungshilfen für Patienten.Wie steht es mit dem Interesse der Profession und der Implemen-tierung?Nichtsdestotrotz haben Patienten begonnen, sowohl formal als auchinformell Einfluss auf die Rechtsprechung zu nehmen. Medizinische

Hochschulen gehen zunehmend dazu über, Kurse zur Verbesserung derArzt-Patient-Kommunikation in ihre Lehrpläne aufzunehmen, und dergrößte nationale Gesundheitsplan hat eine Initiative zur Steigerung desöffentlichen Bewusstseins für diesen Problembereich gestartet. FinanzielleMittel für die Beforschung und Förderung von PEF werden nicht zentralzugewiesen, und Studien zeigen, dass die PEF trotz ihrer positiven Wirkun-gen im klinischen Alltag tatsächlich nur sehr selten zur Anwendung kommt.Initiativen zur Förderung von PEF (z.B. Entscheidungshilfen) stecken nochin den Kinderschuhen.Wie sieht die Zukunft aus?Auch wenn PEF gegenwärtig nicht aktiv gefördert wird, so besitzt Israelaufgrund seines staatlich regulierten allgemeinen Krankenversicherungs-schutzes mit einem guten Zugang zu hochwertigen Gesundheitsleistungendoch alle nötigen Voraussetzungen, um PEF in zukünftigen Jahren raschund auf breiter Basis voranzutreiben.

Schlüsselwörter: Partizipative Entscheidungsfindung, Israel, Patientenautonomie, Informed Consent (Einwilligung nach Aufklärung), Gesundheitssystem,Patientenbeteiligung(Wie vom Gastherausgeber eingereicht)

Background on the Israelihealth care systemIsrael has a national health insurancesystem that provides high-level univer-sal coverage.1 The system is mostly pub-lically funded (58% vs. 42% privatefinancing [2]), comprising about 8%of the gross domestic product (GDP;see Box 1 ). A recent national sur-vey revealed that 89% of respondentswere satisfied with the professional-ism of primary care physicians (PCPs)and 86% with the professionalism ofspecialists. 93% were satisfied withthe interpersonal skills of PCPs and93% with the interpersonal skills ofnurses [3].

1 Prior to the enactment of national health in-surance in 1995, approximately 4% of the po-pulation – about 200 000 people – were unin-sured. Uninsured rates were highest among the Arabpopulation (12%), residents of the northern region(10%) and people aged 15 to 34 (8%). Thesepercentages are comparatively low; in the UnitedStates, for example, over 15% of the population areuninsured [1].

Efforts to promote SDM inIsraeli legislation and in thehealthcare systemPatient involvement in theirown care

Though there is no direct, explicit treat-ment of SDM in Israeli law, the requi-site conditions are encapsulated in thePatients’ Rights Law of 1996.

Patients’ Rights LawThe Patients’ Rights Law was enactedin 1996 and emphasizes that patientrights go beyond health care alone.Most pertinent to SDM are the pa-tient’s right to a second opinion, to in-formed consent to medical treatment,and to access to personal medical infor-mation [4]. Patients may refuse treat-ment, yet if a patient is in grave dan-ger, the clinician may still administerthe required treatment, pending EthicsCommittee approval. Similarly, pendingEthics Committee approval, the clinicianmay decline to disclose medical infor-mation if doing so might be harmful orlife-threatening to the patient.Subsequent to the enactment of thePatients’ Rights Law, the Society forPatients’ Rights educated the public

regarding patients’ rights [4] and in-formed consent [5].

The Dying Patient ActThe Dying Patient Act of 2005 stipu-lates that decisions concerning dyingpatients consider the patient’s wishes inaddition to the medical condition anddegree of suffering. The patient’s wishesare to be periodically reassessed, andif the patient is not competent at thetime of the decision, the physician isto rely upon the patient’s previously ex-pressed wishes, either directly or fromtestimonies of close friends and family.The Israeli Parliament is soon to con-sider a November 2010 bill, modeledupon the Oregon Death with DignityAct, which would amend the Act to le-galize the prescription of lethal drugsto a dying patient upon the patient’srequest [6].

Patient involvement in healthpolicy

Public involvement in Israeli health pol-icy has included a variety of formal andinformal activities, programs and discus-sions [7].

272Z. Evid. Fortbild. Qual. Gesundh. wesen 105 (2011) 271–276

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Box 1: The State of Israel: Demographics and Health Care SpendingIn September 2010, the State of Israel had an estimated population of 7.6 million, of whom 75% were

Jewish and 20% were Arab [1]. Israel is a relatively young society, with 28% of the population under15 years old (compared with 17% in other Western countries) and only 10% (compared with 15%) over64 years. Life expectancy in 2009 was 79.7 years for men and 83.5 years for women, an increase fromthe previous year of 0.7 and 0.5 years, respectively. Infant mortality rate in Israel has been droppingand was estimated at 3.8 per 1000 live births in 2009. As of 2008 cancer was the leading cause of death(26%), followed by heart disease (17%). National spending on healthcare was estimated at 60.6 billionNew Israeli Shekels in 2009, approximately 8% of the GDP, an increase of 4% from the previous year.However, compared with Israel, 23 member countries of the Organisation for Economic Co-operationand Development (OECD) spent a larger percentage of their GDP on healthcare.

Formal InvolvementIsraeli citizens serve on the boards of thenational health plans and as membersof the National Health Council, a nation-ally representative advisory body to theMinistry of Health. Citizens are also in-cluded in the Ministry’s ad hoc commit-tees on such sensitive policy issues asfertility and procreation and electronicmedical records [8,9].The public committee to revise the stan-dard ‘basket’ of health services to whichevery Israeli citizen is legally entitledis comprised of representatives fromthe government, the national healthplans, and the public. Approximately25% of its members have been citizenswith no medical background [10,11].To date, the committee’s recommenda-tions, though not legally binding, havebeen fully adopted.In 2003 Israel inaugurated the ‘‘HealthParliament’’ to involve over 100 cit-izens from diverse segments of thepopulation in a deliberative processregarding allocation of public fundsfor healthcare services [12]. Summariesof the proceedings and recommenda-tions of the Health Parliament werepresented to the Minister of Healthand senior healthcare decision makers.The initiative was discontinued the fol-lowing year due to funding problems[13].

Informal InvolvementApproximately fifty patient advocacygroups operate in Israel, some linkedto specific diseases. Members appearat public legal proceedings and areinvolved in lobbying against govern-ment policies that conflict with patient

interests. Groups are coordinated by theIsraeli Health Consumers’ Organization(Z.V.I.) [7] and by a coalition formedby The Society for Patients’ Rights in2008.

SDM in Israeli medicaltraining and the nationalhealth plansDeans of all four Israeli medical schoolsindicated that there were no orga-nized programs to promote SDM attheir medical schools or affiliated hos-pitals. However, courses for improvingphysician-patient communication havebeen developed and included in the cur-ricula of most medical schools. At TelAviv University, patient empowermentis taught in formal courses on profes-sionalism and ethics and in simulatedrole-playing; it is also incorporated intoa new ‘physician charter’ adopted bythe Faculty of Medicine. At the HebrewUniversity, the genetic counseling pro-gram offers a course on the psycholog-ical aspects of decision making (devel-oped and taught by the first author) inwhich future counselors adopt the per-spective of a counselee. Medical stu-dents and physicians may also partici-pate in workshops designed to improvephysician-patient communication skillsoffered by the Israel Center for MedicalSimulation (MSR) [14].Key personnel affiliated with the fournational health plans in Israel indicatedthat there were no organized programsto promote SDM among their health-care providers. However, the largesthealth plan inaugurated a national ‘‘Ask

Me 3’’ program to create patient aware-ness and reinforce principles of clearhealth communication [15,16].

Research agenda on SDMIn June 1995 the National Health Coun-cil designated the Israel National Insti-tute for Health Policy and Health Ser-vices Research (NIHP) to oversee imple-mentation of the national health insur-ance system, conduct relevant research,including surveys, and procure expertprofessional opinion [17]. Of the 396NIHP-funded research studies between1998 and 2010, only 3% were relatedto SDM (see Box 2 ), an indication ofthe relative importance of SDM to Israelihealth policy. Indeed NIHP has no fundsearmarked for researching and promot-ing SDM in Israel or developing patientdecision aids. Further, there have beenno efforts to standardize informationcommunicated to patients on the risksand benefits associated with screeningand treatment options [18].

Studies of SDM in IsraelIn this section, we briefly review pub-lished studies that have investigatedSDM in Israel. As not all studies indi-cated funding from NIHP, these studiesare distinct from those discussed in theprevious section and listed in Box 2. Thestudies provide important insights intothe factors surrounding sensibilities andissues related to SDM in Israel and thusserve as a context for the developmentof suitable and effective interventions.

Z. Evid. Fortbild. Qual. Gesundh. wesen (ZEFQ) 105 (2011) 271–276www.elsevier.de/zefq 273


Box 2: Studies Related to Shared Decision Making (SDM) Funded by the Israel National In-stitute for Health Policy and Health Services Research (NIHP) from 1998-2010.

A sociologic-juristic analysis of the right for participation – viewpoints of minors with life threateningdiseaseFactors affecting the decision to immunize against influenza among Israeli workersHealth above all? The public’s perception of the government’s role and health insurance issuesPrenatal technology decision making in the era of information and uncertaintyValue of information in the decision making process in the healthcare environmentGenetic counseling in hereditary breast/ovarian cancer in Israel: Psychosocial impact, retention ofgenetic information, subsequent use of health care services, and consumer satisfactionEvaluation of the factors influencing the use of health services (compliance, screening, and treatment)among ultra orthodox breast cancer patientsPublic consultation on priorities in the basket of services under the national health insurance law –values, views and venueFrom compliance to alliance: Engaging psychiatric patients in illness managementThe relationship between the public’s perceptions and attitudes towards prevention and early de-tection of cancer (breast, prostate, colon, skin) and messages in formal health services educationaleffortsThe effect of patients’ participation in improving the care for diabetes mellitus: A randomized trial inthe primary care setting in two regions in Israel

Physician Advocacy of SDM

In a study by Werner et al., 141 IsraeliPCPs were presented with one of twovignettes describing a hypothetical clin-ical encounter involving a calm and co-operative or agitated and uncoopera-tive Alzheimer’s disease patient and hercaregiver [19]. PCPs indicated that theywould question, inform, and involve thecaregiver to a greater extent and moreconsistently than the patient, particu-larly when the patient was agitated.Eighty-nine percent of PCPs stated thatthey would reach a decision togetherwith the family, 6% stated they woulddecide paternalistically, and less than5% stated they would let the familydecide autonomously.SDM is greatly facilitated by the ac-cessibility of information on the in-ternet, such that physicians may nolonger be the primary keepers of medi-cal information. In a representative sam-ple of 118 Israeli PCPs, most physi-cians (82%) agreed that patient in-ternet use indicates patient involve-ment and accountability for their med-ical care, yet 34% felt that the pa-tient or family should rely solely on thephysician [20].

Patient Advocacy of SDM

A locally representative sample of hospi-talized and ambulatory patients rankedsix issues in terms of priority for im-provement [21]. Obtaining more infor-mation from the physician and parti-cipating in decisions2 was ranked mostdesirable (40% of patients ranked it asfirst or second priority). Easier accessto specialists or hospital services wasranked next highest (38% of patientsranking it as top or second priority). Theauthors suggest that this finding may berelated to the desire for greater patientautonomy relative to the paternalisticrole of the PCP imposed by the nationalhealth plans.Brezis and colleagues asked Israeli hos-pitalized patients undergoing surgery orinvasive procedures about the qualityof their informed consent [22]. Though98% of patients recalled having signedan informed consent, only 39 to 60%of patients recalled receiving explana-tions about risks of procedures, and 8 to

2 As participants in the Schattner et al. study [21]rated additional information and greater involvementin decision making as a single item, patient preferencesfor improvement in each of these aspects separatelycannot be determined.

40% remembered a discussion about al-ternative management options. Regard-less, overall satisfaction with the deci-sion making process was rated as goodor very good by 80% of patients and didnot correlate with recall of information.Brezis et al. also asked 496 of the hos-pitalized patients and 350 Israeli ambu-latory patients to indicate their prefer-ence for an autonomous, paternalistic,or shared decision-making process [22].In both settings, approximately 60%of patients preferred SDM, 20% au-tonomous decision making, and the re-mainder paternalistic decision making.3

SDM involves not only physician andpatient, but also close family mem-bers who may be significantly af-fected by the consequences of medi-cal decisions.4 Gilbar and Gilbar eval-uated the views of 57 breast can-cer patients and their husbands ondecision making and physician-patientrelationships three to twelve months

3 These findings are in agreement with those of Coul-ter and Magee in European patients, of whom 51%favored SDM, 23% autonomous, and the remainderpaternalistic decision making [23].

4 Though Israeli law (as in the UK) requires only thatthe physician involve the patient; no provision is madefor close family [24].




after diagnosis [25]. Patients were undertreatment at an oncology clinic in north-ern Israel. Ninety-three percent of pa-tients felt it was important for them toautonomously make medical decisions.Eighty-nine percent of patients felt it im-portant that the treatment decision bein accord with their spouse’s decision,second only to agreement with theirown decision and the physician’s (both95%), thereby indicating patients’ pref-erence for SDM, in which physician, pa-tient, and spouse are involved. Interest-ingly, most patients (88%) and spouses(82%) preferred the final decision to bemade by the physician, possibly reflect-ing an aversion to the burden borne bythe decision maker, even at the cost ofreduced autonomy.In another study, a nationally repre-sentative random sample of Israelis re-ported their perception of patient par-ticipation in the four national healthplans [26]. Patients did not feel thatthey were part of the decision-makingprocess in their health plans. Moreover,perception of patient participation waspositively correlated with perception ofhealth plan performance.

SDM in End-of-Life Care

Physicians (n = 339) and a random sam-ple of elderly Israelis (n = 987) expressedincongruous views on life-sustainingtreatment in terminal illness. Specif-ically, physicians would order signifi-cantly more life-sustaining treatmentsthan patients would want or than theywould order for themselves in the sameposition. These incongruities may be at-tributable to cultural norms underlyingIsraeli medical practice and may be ame-liorated by promoting open communi-cation between physicians and patientsin medical education [27].

SDM in Actual Clinical Practice

In a qualitative study, Karnieli-Millerand Eisikovits evaluated whether strate-gies used by seventeen pediatric gas-troenterologists in northern Israel toinform adolescents and their familiesof a diagnosis of irritable bowel syn-drome (IBS) and discuss treatment op-tions were characterized by shared or

paternalistic decision making [28]. Inpre-encounter interviews, physicians in-dependently included SDM principles indescribing their routine practice. How-ever, observation of the clinical encoun-ters revealed tactics used by physiciansto persuade patients to agree with theirpreferred treatment choice that ulti-mately reduced patient-physician trustand resulted in low compliance.Additional evidence for the lack of SDMin actual clinical practice comes froman analysis of patient encounters withIsraeli PCPs that revealed conflicts in40% of the consultations, 21% relatedto rationing of health care resources[29]. PCPs most commonly dealt withresource rationing by withholding othertreatment options from their patients.Moreover, opening and closing phasesof the encounter were shorter for en-counters with conflict, suggesting thatmore extensive deliberation character-izing SDM may be associated with re-duced conflict.

Initiatives to Promote SDM

Segal and Shahar described the designand initial implementation of PANDEX –a web-based application incorporatingdecision-analytic methods to assist pa-tients and care providers to reach op-timal deliberative decisions [30]. In apre-clinical feasibility study, Israeli ge-netic consultants were presented withscenarios of women who had comefor genetic consultation. Consultantstended to agree with the strategies re-commended by PANDEX and acknowl-edged its capability to provide impor-tant insight. Though consultants did feelthat PANDEX could serve as a useful toolfor patients prior to their meeting withthe genetic consultant, they expressedreservations about the integration of aPANDEX-like decision support system inmedical care.

ConclusionsThis review indicates that Israel pos-sesses the requisite legislative and re-search infrastructure to facilitate in-formed patients who are active parti-cipants in decisions pertaining to their

health. Indeed, Israel’s universal cover-age and small number of health plansmake rapid, widespread advances inSDM feasible. Burgeoning initiatives topromote SDM in medical training andpractice reflect a growing interest in pa-tient involvement. Only by cultivatingthese initiatives and with continued sup-port for SDM at multiple levels can ef-forts to promote SDM be advanced, ul-timately resulting in a greater role forcitizens in their healthcare and healthoutcomes.

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Author's personal copy - Psychology Today...Author's personal copy Box 1: The State of Israel: Demographics and Health Care Spending In September 2010, the State of Israel had an estimated

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