100Related to One-time <strong>Decision</strong>s or to Ongo<strong>in</strong>g <strong>Decision</strong>-mak<strong>in</strong>gThe typical DA, focused as it is on a specific diagnosis and potential treatments, is<strong>in</strong>tended to be used once by any given <strong>in</strong>dividual. However, some types of chronicconditions, mental illnesses among them, require not just one discrete decision butongo<strong>in</strong>g or cont<strong>in</strong>uous decision-mak<strong>in</strong>g <strong>in</strong> response to chang<strong>in</strong>g symptoms, abilities,needs, and wants. Indeed, most physician contacts, health care decisions, andexpenditures support the management of chronic illnesses, <strong>in</strong>clud<strong>in</strong>g mental illnesses(Agency for <strong>Health</strong>care Research and Quality, 2007). Thus, while one decision mayneed to be made today, it is predictable that other related or similar decisions willneed to be made <strong>in</strong> the future.The process of us<strong>in</strong>g DAs can therefore be extended over a longer period of time.Web technologies are constantly evolv<strong>in</strong>g and improv<strong>in</strong>g to enable consumers toma<strong>in</strong>ta<strong>in</strong> their own health records securely onl<strong>in</strong>e and DAs can also be used <strong>in</strong> conjunctionwith disease management technologies. The Web site at http://www.myselfhelp.comis one example of such a technology; for a flat monthly fee, it offers consumersself-help programs and discussion boards to assist <strong>in</strong> recovery. It also offersproviders tips for work<strong>in</strong>g with <strong>in</strong>dividuals who are us<strong>in</strong>g the Web site’s resources.Another example is the Network of <strong>Care</strong> Web sites supported by Trilogy IntegratedResources. These sites can <strong>in</strong>corporate a wide variety of materials to aid <strong>in</strong> consumerdecision-mak<strong>in</strong>g over any length of time.Formal DAs and other Informational MaterialsIn addition to the formal DAs that are <strong>in</strong>tended to serve as such, and that have beenevaluated <strong>in</strong> the research literature, there are <strong>in</strong>numerable sources of <strong>in</strong>formation<strong>in</strong>tended to help health care consumers make decisions. For example, many diseasespecificorganizations, such as the American Heart Association and the AmericanCancer Society and <strong>in</strong>surers offer help to patients fac<strong>in</strong>g important decisions, sometimesus<strong>in</strong>g materials from <strong>Health</strong>wise or other sources discussed <strong>in</strong> the follow<strong>in</strong>gpages. These materials may well be thorough and scientifically rigorous. Similarly,the National Alliance on <strong>Mental</strong> Illness (NAMI, www.nami.org) offers extensive<strong>in</strong>formation for consumers about medications, both generally and specifically, stat<strong>in</strong>gthat “Knowledge is power.” <strong>Mental</strong> <strong>Health</strong> America (mentalhealthamerica.net)also offers detailed <strong>in</strong>formation at its Web site, and the Depression and Bipolar SupportAlliance’s Web site provides a Wellness Toolbox, replete with <strong>in</strong>formation andsuggestions (http://www.dbsalliance.org/site/PageServer?pagename=empower_toolbox).Thus the dist<strong>in</strong>ction is unclear between a real DA and a body of <strong>in</strong>formationavailable—usually on a Web site—that is <strong>in</strong>tended to achieve the goal of help<strong>in</strong>gan anonymous patient understand and make a decision about an available medicaltreatment. Many publicly available Web offer<strong>in</strong>gs meet the def<strong>in</strong>ition of a DA offeredearlier (i.e., they help clients understand the benefits and costs of a medical decisionand <strong>in</strong>clude materials that can help <strong>in</strong>dividuals clarify their own values and prefer-<strong>Shared</strong> <strong>Decision</strong>-<strong>Mak<strong>in</strong>g</strong> <strong>in</strong> <strong>Mental</strong> <strong>Health</strong> <strong>Care</strong>: Practice, Research, and Future Directions
101ences). Some of these Web-based materials probably also meet the more rigorouscriteria established by the Cochrane Collaboration, expla<strong>in</strong>ed <strong>in</strong> the follow<strong>in</strong>g pages.Geared to Professionals or to ConsumersThis paper focuses primarily on DAs <strong>in</strong>tended for use by health care consumers.There are also different k<strong>in</strong>ds of DAs that are <strong>in</strong>tended for use by health care cl<strong>in</strong>icians.These tools are necessarily of a very different nature, and are not <strong>in</strong> fact decisionaids as def<strong>in</strong>ed here. Yet they are important because they are likely to shapethe th<strong>in</strong>k<strong>in</strong>g and practice of providers. However, such tools may weigh options andexpected outcomes <strong>in</strong> a very different manner than consumer DAs (Hun<strong>in</strong>k, 2001).Sources of DAs for Physical <strong>Health</strong> IssuesAs suggested <strong>in</strong> the preced<strong>in</strong>g discussion, there are numerous approaches to the developmentof DAs us<strong>in</strong>g a variety of technologies. Given the goals of the Institute ofMedic<strong>in</strong>e, the Annapolis Coalition, and many <strong>in</strong>dividuals <strong>in</strong> recovery from mentalillnesses, it seems likely that more DAs <strong>in</strong>tended for mental health consumers will bedeveloped. At present, DAs are used primarily <strong>in</strong> physical health care. This sectionidentifies some of the key sources of these aids and describes the k<strong>in</strong>ds of materialsthey offer. However, evaluat<strong>in</strong>g the quality of the <strong>in</strong>formation they present is beyondthe scope of this paper.Lists of DAsSeveral organizations ma<strong>in</strong>ta<strong>in</strong> lists of DAs developed elsewhere. At least one of theseorganizations offers assistance <strong>in</strong> determ<strong>in</strong><strong>in</strong>g the quality of the aids themselves byevaluat<strong>in</strong>g whether they meet the standards established by the International Patient<strong>Decision</strong> Aids Standards (IPDAS) Collaboration, previously discussed. Note that thislist is not exhaustive, nor is it <strong>in</strong>tended to endorse any of the organizations <strong>in</strong>volved.Ottawa <strong>Health</strong> Research Institute (OHRI). The Ottawa <strong>Health</strong> Research Institute(OHRI), the research arm of the Ottawa Hospital and affiliated with the Universityof Ottawa, houses the Patient <strong>Decision</strong> Aids research group. The group and its director,Annette M. O’Connor, R.N., Ph.D., are <strong>in</strong>ternational leaders <strong>in</strong> the design,evaluation, and dissem<strong>in</strong>ation of DAs. They have written numerous papers about theuse of DAs, and have prepared a <strong>Decision</strong> Aid Toolkit that guides others who wantto create DAs. In addition, they develop and test tra<strong>in</strong><strong>in</strong>g programs for patients andhealth practitioners (O’Connor & Jacobsen, 2003). The Web site can be accessed athttp://decisionaid.ohri.ca.The Patient <strong>Decision</strong> Aids research group ma<strong>in</strong>ta<strong>in</strong>s an “A to Z Inventory” of availabledecision aids that have been developed by other organizations. DAs may be<strong>in</strong>cluded <strong>in</strong> the <strong>in</strong>ventory if they satisfy the Cochrane Collaboration def<strong>in</strong>ition of a<strong>Shared</strong> <strong>Decision</strong>-<strong>Mak<strong>in</strong>g</strong> <strong>in</strong> <strong>Mental</strong> <strong>Health</strong> <strong>Care</strong>: Practice, Research, and Future Directions
- Page 4:
iiContentsIntroduction ............
- Page 11 and 12:
5outpatient commitment (Holmes-Rovn
- Page 13 and 14:
7Advantages• Practitioners can be
- Page 15:
9Section 2The Practice of SharedDec
- Page 22 and 23:
16Section 3SDM ResearchCurrent rese
- Page 24:
18Mental health care providers are
- Page 27 and 28:
21want mental health treatment or d
- Page 29:
23Some participants raised concerns
- Page 37 and 38:
31Section 6ConclusionsShared decisi
- Page 39 and 40:
33Fellowes, D., Wilkinson, S., & Mo
- Page 41 and 42:
35Power, A. Kathryn. (July 10, 2007
- Page 43 and 44:
37Appendix AResourcesThis list is p
- Page 45 and 46:
39Appendix BShared Decision-MakingM
- Page 47 and 48:
41Annelle Primm, M.D., M.P.H.Direct
- Page 49 and 50:
43Supplement 1Shared Decision-Makin
- Page 51 and 52:
45IntroductionThe consumer-driven r
- Page 53 and 54:
47Background: Definitions of SDM an
- Page 55 and 56: 49• Freedom to live in the commun
- Page 57 and 58: 51providers only (Wills & Homes-Rov
- Page 59: 53SDM for Schizophrenia TreatmentBu
- Page 63 and 64: 57I interact with my consumers; I f
- Page 65 and 66: 59ReferencesAdams, J. R., & Drake,
- Page 67 and 68: 61Elwyn, G., Edwards, A., Kinnersle
- Page 69 and 70: 63Murray, E., Pollack, L., White, M
- Page 71 and 72: 65Thistlethwaite, J., Evans, R., Ti
- Page 73 and 74: 67AbstractShared decision-making is
- Page 75 and 76: 69Confronting Critical Challenges:
- Page 77 and 78: 71into treatment should still be in
- Page 79 and 80: 73these approaches, people are more
- Page 81 and 82: 75consumers to engage with their pr
- Page 83 and 84: 77that were produced in the U.S., w
- Page 85 and 86: 79a healing partnership and develop
- Page 87 and 88: 81Shared Decision-Making in Mental
- Page 89 and 90: 83However, peer support requires st
- Page 91 and 92: 85ConclusionsImplementation of SDM
- Page 93 and 94: 87Fellowes, D., Wilkinson, S., & Mo
- Page 95 and 96: 89President’s Commission for the
- Page 97 and 98: 91Supplement 3Aids to Assist Shared
- Page 99 and 100: 93IntroductionSignificance of Share
- Page 101 and 102: 95In recent years, a variety of tec
- Page 103 and 104: 97• Provide balanced information,
- Page 105: 99Form of Access or AdministrationC
- Page 109 and 110: 103video about shared decision-maki
- Page 111 and 112: 105clarify one’s own values and p
- Page 113 and 114: 107potential results, than on quant
- Page 115 and 116: 109Once again, however, it is worth
- Page 117 and 118: 111who belong to minority groups or
- Page 119 and 120: 113Hamann, J., Langer, B., Winkler,
- Page 122: U.S. DEPARTMENT OF HEALTH AND HUMAN