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1 Partnering with Patients and Families t Enhance Safety and Quality A Mini Tlkit Advancing the Practice f Patient- and Family-Centered Care: Hw t Get Started AND Advancing the Practice f Patientand Family-Centered Ambulatry Care: Hw t Get Started DOWNLOAD frm: Patients & Families as Advisrs in Enhancing Safety and Quality: Bradening Our Visin Selected Resurces fr Partnering with Patients and Families In Patient Safety Patient and Family Advisrs: Sample Applicatin Frm Tips fr Grup Leaders and Facilitatrs n Invlving Patients and Families n Cmmittees and Task Frces Shwcase Effrts t Partner with Patients and Families: Call fr Papers fr the 4th Internatinal Cnference n Patient- and Family-Centered Care DOWNLOAD in May 2008 frm:

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3 INSTITUTE FOR FAMILY-CENTERED CARE 7900 WISCONSIN AVENUE, SUITE 405, BETHESDA MD 20814, PHONE FAX PATIENTS & FAMILIES AS ADVISORS IN ENHANCING SAFETY AND QUALITY: BROADENING OUR VISION There are cuntless ways that patients and families can serve as advisrs t enhance quality and safety, redesign systems f care, and educate health care prfessinals and ther staff, students, and trainees abut safety. Sme are frmal and nging, thers are time limited and infrmal. All are necessary t ensure that care is safe and truly respnsive t patient and family needs, pririties, gals, and values. Belw is a list f sme f the ways that patients and families can serve as advisrs. Patient and Family Advisry Cuncil Create a patient and family advisry cuncil fr the rganizatin and ensure that patient safety is a regular agenda item. Encurage cuncil members t hld quarterly r semi-annual cffee hurs with patients, families, staff, and physicians t explre ideas fr imprving the experience f care and enhancing quality and safety. Encurage hspital and clinic leaders t invite cuncil members r ther experienced patient and family advisrs t participate in patient safety runding. Patient Safety Cmmittee and Related Task Frces Appint patient and family advisrs (at least three) t serve n the Patient Safety Cmmittee. Include patients and families n teams develping systems and practices fr medicatin recnciliatin. Include patient and family advisrs as members f the team planning, implementing, and evaluating a Rapid Respnse Team that can be called by patients and families (Cnditin H). Appint patient and family advisrs t task frces and teams wrking n patient safety and ther quality imprvement endeavrs. With thughtful planning and supprt, include patient and family advisrs as part f the rt cause analysis prcess. Invlve patient and family advisrs in develping supprtive prgrams and resurces fr patients r families wh have experienced medical errr. 1

4 Changing the Cncept f Families as Visitrs Appint patient and family advisrs t hspital cmmittees wrking t change the cncept f families as visitrs t the view that families are allies fr quality and safety; they are the cnstant and cnsistent advcates fr patients acrss the transitins in health care. Appint patient and family advisrs t HIPAA cmmittees t ensure that families are bradly defined and invlved in care and decisin-making accrding t patients preferences. Include patient and family advisrs n teams develping systems and appraches t enhance safety and cnsistency f care in discharge planning and ther transitins and handffs. Patient and Family Infrmatin and Educatin Resurces Invlve patient and family advisrs in helping the health system, hspitals, and clinics in develping a variety f ways fr ther patients and families t becme knwledgeable abut risks and their rles in patient safety. Hld brainstrming sessins with patients and families befre develping educatinal materials and prgrams abut patient safety and then invlve them thrughut the develpment prcess. Ask patient and family advisrs t assist in translating infrmatinal resurces and in ensuring that these materials are written r available in frmats that are understandable and useful t all peple, regardless f their level f literacy. Train and supprt patients and families t lead r c-lead educatinal and supprt prgrams. Invite patient and family advisrs t participate in the develpment f the hspital s r clinic s website, ensuring that there is useful infrmatin abut the patient and family rle in patient safety and the preventin f medical errr. Perceptins f Care Develp, with patients and families, a patient/family satisfactin survey and invlve them in develping the respnses t issues and prblems identified. Include questins abut patient safety, medical errrs, and perceived risks in fllw-up phne calls with patients and/r families after a hspital stay r clinic visit. Prfessinal Educatin Invite patients r families t share stries abut the experience f care at staff rientatin and inservice prgrams. Invlve patient and family advisrs in training activities fr staff and physicians that fcus n cllabrating with patients and families in imprving safety and quality. 2

5 Invlve patient and family advisrs in teaching medical students, residents, fellws, ther physicians and faculty, and nurses abut medical errrs and hw t disclse a medical errr r a near miss with patients and families. Patient Safety Week Activities Invite patient and family advisrs t participate in the planning fr Patient Safety Week Activities. Slicit patient and family invlvement in develping linkages with cmmunity prgrams and resurces. In planning patient safety events, ask patient and family advisrs t pen the dr t cmmunity rganizatins and agencies, lcal businesses and business grups, schls, religius rganizatins, and retirement cmmunities, t mentin a few. Ask patients and families t accmpany staff when they meet with cmmunity leaders, funders, legislatrs, and ther plicy makers. Adapted frm Jeppsn, E., & Thmas, J. (1994). Essential Allies: Families as Advisrs. Institute fr Family-Centered Care, Bethesda, MD. Additinal guidance resurces available thrugh the Institute fr Family-Centered Care: Webster, P. D., & Jhnsn, B. H. (2000). Develping and Sustaining a Patient and Family Advisry Cuncil; Blaylck, B. L., Ahmann, E., & Jhnsn, B. H. (2002). Creating Patient and Family Faculty Prgrams. Fr additinal infrmatin abut building partnerships with patients and families, visit the fllwing websites: Institute fr Family-Centered Care: Advancing the Practice: Patients and Families as Advisrs and Leaders at New Health Partnerships at 3

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7 INSTITUTE FOR FAMILY-CENTERED CARE 7900 WISCONSIN AVENUE, SUITE 405, BETHESDA MD 20814, PHONE FAX Selected Resurces fr Partnering with Patients and Families in Patient Safety Ahmann, E., Abraham, M. R., & Jhnsn, B. H. (2003). Changing the cncept f families as visitrs: Supprting family presence and participatin. Bethesda, MD: Institute fr Family-Centered Care. Blaylck, B. L., Ahmann, E., & Jhnsn, B. H. (2002). Creating patient and family faculty prgrams. Bethesda, MD: Institute fr Family-Centered Care. Bthman, R. C., & Sedman, A. (2005, January). The University f Michigan mdel f transparency and effects n litigatin. Presented at the Patient Safety Meeting f Natinal Assciatin f Children s Hspitals and Related Institutins, New Orleans, LA. Cnway, J. (2008). Patients and families: Pwerful new partners fr healthcare and caregivers. Healthcare Executive, 23(1), Cnway, J., Jhnsn, B. H., Edgman-Levitan, S., Schlucter, J., Frd, D., Sdmka, P., & Simmns, L. (2006). Partnering with patients and families t design a patient- and family-centered health care system: A radmap fr the future A wrk in prgress. Retrieved January 31, 2008, frm Crina, I., & Shapir, E. (2007). Family-centered patient advcacy: A training manual. Wantagh, NY: PULSE f NY. Cnnr, M., Pnte, P. R., & Cnway, J. (2002). Multidisciplinary appraches t reducing errr and risk in a patient care setting. Critical Care Nursing Clinics f Nrth America, 14(4), , viii. Crcker, L., & Jhnsn, B. (2006). Privileged presence: Persnal stries f cnnectins in health care. Bulder, CO: Bull Publishing Cmpany. Ducls, C. W., Eichler, M., Taylr, L., Quintela, J. Main, D. S., Pace, W., et al. (2005). Patient perspectives f patient-prvider cmmunicatin after adverse events. Internatinal Jurnal fr Quality in Health Care, 17(6), Gibsn, R., & Singh, J. P. (2003). Wall f science: The untld stry f the medical mistakes that kill and injure millins f Americans. Washingtn, DC: LifeLine Press. Elder, N. C., Regan, S. L., Pallerla, H., et al. (2007). Develpment f an instrument t measure senirs patient safety health beliefs: The Senirs Empwerment and Advcacy in Patient Safety (SEAPS) survey. Patient Educatin and Cunseling, 69(1-3), Entwistle, V. A., Mellw, M. M., & Brennan, T. A. (2005). Advising patients abut patient safety: Current initiatives risk shifting respnsibility. Jurnal n Quality and Patient Safety, 31(9),

8 Frd, D. (2006). Patient safety: The patient s rle. Opinin Matters, 42(3), Harteker, L. (2003). Partnerships fr patient safety: Prfiles f fur hspitals. Advances in Family- Centered Care. 9(1), Hibbard, J. H. (2003). Engaging health care cnsumers t imprve the quality f care. Medical Care, 41(1), I61-I70. Jhnsn, B., Abraham, M., Cnway, J., Simmns, L., Edgman-Levitan, S., Sdmka, P., Schlucter, J., & Frd, D. (2008). Partnering with patients and families t design a patient- and family-centered health care system: Recmmendatins and prmising practices. Bethesda, MD: Institute fr Family- Centered Care. Kenney, L. K., & van Pelt, R. A. (2005). T err is human; The need fr trauma supprt is, t: A stry f the pwer f patient/physician partnership after a sentinel event. Patient Safety & Quality Healthcare, Jan/Feb, 6,8-9. Retrieved January 31, 2008, frm Leape, L. L., & Berwick, D. M. (2005). Five years after T Err Is Human: What have we learned? Jurnal f the American Medical Assciatin, 293, Lenhardt, K. K., Bnin, D., & Pagel, P. (2007). Hw t create an accurate medicatin list in the utpatient setting thrugh a patient-centered apprach. Walwrth Cunty, WI: Aurra Health Care. Retrieved February 1, 2008, frm Lenhardt, K. K., Bnin, D., & Pagel, P. (2006). Partners in safety: Implementing a cmmunitybased patient safety advisry cuncil. Wiscnsin Medical Jurnal, 105(8), McGreevey, M. (Ed.). (2006). Patients as partners: Hw t invlve patients and families in their wn care. Oakbrk Terrace, IL: Jint Cmmissin Resurces. Pillw, M. (Ed.). (2007). Patients as partners: Tlkit fr implementing natinal patient safety gal 13. Oakbrk Terrace, IL: Jint Cmmissin Resurces, Inc. Reiling, J. (2007). Safe by design: Designing safety in health care facilities, prcesses, and culture. Oakbrk Terrace, IL: Jint Cmmissin Resurces. Wang, S. (2007, September 4). Teaming up t prevent crashes Sme hspitals give patients the pwer t get extra help, stat. The Washingtn Pst, HE01. Retrieved January 31, 2008 frm Wayman, K. W., Yaeger, K. A., Sharek, P. J., Trtter, S., Wise, L., Flra, J., et al. (2007). Simulatinbased medical errr disclsure training fr pediatric healthcare prfessinals. Jurnal f Healthcare Quality, 29(4); Webster, P. D., & Jhnsn, B. H. (2000). Develping and sustaining a patient and family advisry cuncil. Bethesda, MD: Institute fr Family-Centered Care. Weingart, S. N., Price, J., Duncmbe, D., Cnnr, M., Smmer, K., Cnley, K. A., et al. (2007). Patient and family invlvement: Patient- reprted safety and quality f care in utpatient nclgy. Jurnal n Quality and Patient Safety, 33(2), Wjcieszak, D., Saxtn, J. W., & Finkelstein, M. M. (2007). Srry wrks! Disclsure, aplgy, and relatinships prevent medical malpractice claims. Blmingtn, IN: AuthrHuse. Zimmerman, T. M., & Amri, G. (2007). Including patients in rt cause and system failure analysis: Legal and psychlgical implicatins. Jurnal f Healthcare Risk Management, 27(2),

9 Selected Websites Institute fr Family-Centered Care (IFCC) The Institute s website includes a wealth f resurces t supprt and advance the practice f patient- and family-centered care, including free dwnlads, nline stries frm patients, families, prviders, and institutins, and an nline stre with publicatins, CD-ROMs, and mre. The Institute als ffers in-depth training seminars and cnferences. In-depth Seminar: Hspitals and Cmmunities Mving Frward with Patient- and Family-Centered Care: Enhancing Quality and Safety fr Patients and Their Families The 4 th Internatinal Cnference n Patient- and Family-Centered Care Advancing the Practice f Patient- and Family-Centered Care: Hw t Get Started AND Advancing the Practice f Patient- and Family-Centered Ambulatry Care: Hw t Get Started (Free dwnlads) Agency fr Healthcare Research and Quality (AHRQ) AHRQ funds, cnducts, and disseminates research t imprve the quality, safety, efficiency, and effectiveness f health care. The infrmatin gathered frm this wrk and made available n the website assists all key stakehlders patients, families, clinicians, leaders, purchasers, and plicymakers make infrmed decisins abut health care. American Hspital Assciatin (AHA) The AHA is the premier membership rganizatin fr U.S. hspitals and prvides leadership and advcacy fr member hspitals t imprve care fr patients and their families. IFCC cllabrated with AHA t develp the tlkit, Strategies fr Leadership: Patient- and Family-Centered Care and is available fr dwnlad at, The AHA McKessn Quest fr Quality Prize is a $75,000 award that recgnizes a hspital s exemplary leadership in aligning the agendas fr quality, safety, and patient- and family-centered care. Cnsumers Advancing Patient Safety (CAPS) CAPS is a cnsumer-led nnprfit rganizatin that brings tgether patients, families, health care prfessinals, and thers t imprve patient safety thrugh educatin, research, develpment f errr and near miss reprting systems and preventin strategies, and public plicy initiatives. Institute fr Healthcare Imprvement (IHI) IHI is a leader in advancing the imprvement f health care. IHI s ever-expanding website has a wealth f infrmatin n patient and family invlvement in quality imprvement and research. This includes strategies t capture the patient and family experience f care, as well as t invlve patients and families n evaluatin teams. Institute f Medicine (IOM) 3

10 The IOM is affiliated with the Natinal Academies f Science and serves as a nnprfit rganizatin devted t prviding leadership n health care. IOM s majr reprt, Crssing the Quality Chasm: A New Health System fr the 21 st Century, serves as a landmark publicatin in examining the prblems f the current U.S. health care system and ffering strategies fr change. The publicatin, Preventing Medicatin Errrs, is part f the Crssing the Quality Chasm Series and is available frm: Internatinal Alliance f Patients Organizatins (IAPO) The IAPO is an internatinal alliance f patients rganizatins that prmtes patient-centered health care thrughut the wrld. Cre principles include respect fr unique needs, preferences, and values; chice and empwerment; infrmatin sharing; and patient invlvement in health plicy. Jsie King Fundatin In 2001, Jsie King, the 18-mnth ld daughter f Tny and Srrell King, died frm medical errrs. This rganizatin is dedicated t preventing thers frm dying r being harmed by medical errrs. Effrts t prmte partnerships amng patients, families, and health care prviders are integral t the fundatin s wrk. Medically Induced Trauma Supprt Services (MITSS) MITSS is a patient-led nnprfit rganizatin creating awareness abut medically induced trauma, prmting pen cmmunicatin amng patients, families, and health care prfessinals, and prviding supprt t individuals wh have been affected by medical errr. Natinal Family Caregivers Assciatin (NFCA) NFCA serves as a clearinghuse f infrmatin and supprt fr thse caring fr thers wh are aged, disabled, r chrnically ill. There are a variety f stries and tls t empwer family caregivers and prmte advcacy. Natinal Patient Safety Fundatin (NPSF) With its missin t imprve the safety and welfare f patients in the health care system, NPSF prvides an indispensable amunt f resurces including a specific area devted slely t resurces fr patients and families wh wish t get invlved in patient safety initiatives. New Health Partnerships (NHP) New Health Partnerships is an nline cmmunity fr patients, their families, and health care prviders dedicated t imprving the health care and lives f peple with chrnic cnditins. Prfiles f individuals and rganizatins, infrmatin, tls and ther resurces prmting cllabrative self-management supprt are ffered. Patients Accelerating Change (PAC) Patients Accelerating Change (PAC) is a prgram in the United Kingdm bringing patients tgether with clinicians and managers in hspitals and primary care settings t transfrm health care services. A resurce packet with case studies and lessns learned thrugh this cllabrative wrk is available frm the Picker Institute Eurpe and the Clinical Gvernance Supprt Team. 4

11 Patient Safety and Quality Healthcare (PSQH) This nline jurnal ffers numerus articles highlighting the rle f patients and families in patient safety and identifying strategies and benefits. Prfessinals with Persnal Experience in Chrnic Care (PPECC) This grup f health care prfessinals established PPECC t advcate fr imprved systems f care after persnal and family experiences with chrnic illness and lng-term care. Health care prfessinals are encuraged t share their persnal experiences with the health care system in rder t prmte greatly needed change. PULSE f New Yrk PULSE is a cmmunity-based nnprfit rganizatin develped and led by patients and families wh have experienced medical errr. Its missin is t use patient and family stries in increasing patient safety awareness and reduce the incidence f medical errr. It prvides supprt t patients and families wh have experienced errrs and ffers training fr patient and family advcates fr safety within the health care system. Remaking American Medicine (RAM) In 2006, PBS aired the Remaking American Medicine series that presented the current state f health care and strategies fr imprvement. This website was created t supprt the wrk f lcal cmmunities acrss America t effectively imprve the quality f health care. The Srry Wrks! Calitin This calitin, cmpsed f all stakehlder grups, including prviders, lawyers, and patients, is prmting a transparent mdel f disclsure f medical errrs titled, Srry Wrks! Details abut the mdel and related data are presented n the site. Vice fr Patients Vice4Patients is an rganizatin devted t empwering patients t be their wn health care advcates in rder t address patient safety cncerns and medical errrs. The rganizatin advcates building partnerships between patients and prviders and prvides infrmatin and tls t strengthen cnsumer skills. Wrld Alliance fr Patient Safety: Patients fr Patient Safety The Wrld Health Organizatin has created the alliance and is partnering with patients and families wh have experienced errr t imprve patient safety in all settings acrss a glbal netwrk f rganizatins. 5

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13 PATIENT AND FAMILY ADVISORS SAMPLE Applicatin Frm (Please Print) Name: Address: City: State: Zip Cde: Telephne: (Area Cde) ( ) Fax Number: Address:... Prgram/Department and Services invlved in yur care: Yur care was primarily: Inpatient Outpatient Bth inpatient and utpatient Emergency care Other prgrams, departments, r services Why wuld yu like t serve as an advisr? Issues f special interest t yu: If yu have served as an advisr fr ther prgrams r rganizatins, please briefly describe this experience: 1

14 Have yu dne public speaking r teaching? If s, please describe: Please specify times when yu are able t attend meetings: Daytime: Evening: Weekend: I/We wuld be interested in helping with: Reviewing Patient and Family Satisfactin Tls Develping/Reviewing Patient/Family Educatinal Materials and Website Resurces Develping and Updating the Hspital s Website Planning fr the Ambulatry Care Planning fr the Inpatient Care Planning fr the Emergency Care Experience Ensuring Patient Safety and the Preventin f Medical Errrs Educating Medical Students and Residents, New Emplyees, and Other Staff abut the Experience f Care and Effective Cmmunicatin and Supprt Participating in Facility Design Planning Imprving the Crdinatin f Care, Discharge Planning, and the Transitin t Hme and Cmmunity Care Develping the Uses fr Infrmatin Technlgy, including Electrnic Medical Recrds, Patient Prtals, and Electrnic Persnal Health Recrds (ephr s) D yu knw f ther individuals and families wh have experienced care at. wh might be interested in serving as advisrs? Please call them fr us r list name(s) and phne number(s) belw: Please return frm t: 2

15 INSTITUTE FOR FAMILY-CENTERED CARE 7900 WISCONSIN AVE., SUITE 405, BETHESDA, MD 20814, PHONE FAX Tips fr Grup Leaders and Facilitatrs n Invlving Patients and Families n Cmmittees and Task Frces Selecting Patients and Families t Serve as Advisrs Lk fr peple wh are: - interested in serving as advisrs; - cmfrtable in speaking in a grup with candr; - able t use their persnal experience cnstructively; - able t see beynd their wn experience; - cncerned abut mre than ne issue r agenda; - able t listen and hear differing pinins; and - representative f patients and families served by the hspital. Having just ne patient r family member n a cmmittee is nt usually successful. Strive fr patients and family members t be ne third t ne half f the cmmittee's membership. Remember that serving as a patient r family advisr is a new rle fr many peple. Sme patients and family members will need mre supprt than thers. Recgnize that individuals can grw and develp in this rle. Preparatin fr Meetings Cnsider the cnvenience and schedules f patients and families as well as staff in planning the times and lcatins fr meetings. Send agenda and minutes ahead f time t all cmmittee members, remembering t allw time fr material t reach patients and families (they may nt have faxes, , etc.). Prvide a list f cmmittee members with a brief descriptin f each member. Offer a mentr, an experienced patient r family advisr r anther cmmittee member, t prvide supprt t a new advisr. Offer t have smene cme t the first meetings with a new member and debrief afterwards. Remember that this type f cllabratin is new fr many peple, s preparatin and rientatin is imprtant fr staff, as well as patients and family members. Plan fr cmpensatin f time, expertise, and expenses fr patients and families. Designate ne staff member t be respnsible fr reimbursement and ther practical r lgistical issues fr patient and family advisrs. 1

16 During Meetings Spend extra time n intrductins at the beginning f a meeting, especially fr a new cmmittee r when there are new members. Cnsider beginning sme meetings with a brief stry that captures patients' and families' experiences and perceptins f care. As the leader r chair, explicitly discuss the cncept f cllabrating with patients and families, recgnizing that it is a prcess with everyne learning tgether hw t wrk in new ways. Cnvey that it will be imprtant fr the grup t discuss hw the prcess is wrking frm time t time. Acknwledge that there will be tensins and differing pinins and perceptins. Prvide clear infrmatin abut the purpse f the cmmittee r task frce and the rles f individual members. Avid using jargn. Explain technical terms when used. Ask fr the pinins f patients and families during discussins, encuraging their participatin and validating their rle as cmmittee members. T avid becming stuck in the pwer f a negative situatin, acknwledge the negative experience and ask if there was anything supprtive, helpful, r psitive fr the grup t learn frm the situatin. Ask fr ideas and suggestins t prevent r imprve the situatin. If the retelling f a persnal stry becmes very prlnged, acknwledge the pwer and imprtance f the stry, suggest that sme plicy implicatins can be learned frm the stry and that there may ther mre apprpriate frums where this stry can be shared. When there are extreme differences in pinins r perceptins, cnsider: - appinting a task frce fr further study f the issue; - asking the pinin f ther grups (e.g., anther hspital cmmittee r patient/family advisry grup); r - delaying a decisin and cnsidering at a future meeting. Anticipate Illness Demands Patients and their family members may nt be able t attend every meeting. There are ther demands n their time and stamina. Acknwledge t patients and families individually, and t the cmmittee as a whle, that their presence was missed and their participatin is valued when they are able t participate. Mailing the minutes and future agendas helps reinfrce that their participatin is valued. Having shared memberships n the cmmittee may help. Cnsider having a "patient and family leave plicy" s that cnsumers can chse an inactive rle but maintain their membership shuld there be circumstances that require sme time ff. Creating a variety f ways fr patients and families t participate in the cnsideratin f issues may be useful (e.g., cnference calls, written review f materials). Fr additinal guidance resurces available thrugh the Institute fr Family-Centered Care: Webster, P. D., & Jhnsn, B. H. (2000). Develping and Sustaining a Patient and Family Advisry Cuncil; Blaylck, B. L., Ahmann, E., & Jhnsn, B. H. (2002). Creating Patient and Family Faculty Prgrams; Blaylck, B. L., & Jhnsn, B. H. (2002). Advancing the practice f patient- and family-centered geriatric care; Jeppsn, E. S., & Thmas, J. (1995). Essential Allies: Families as Advisrs; and Thmas, J., &. Jeppsn, E. S. (1997). Wrds f Advice: A Guidebk fr Families Serving As Advisrs. Available frm the Jint Cmmissin n Accreditatin f Healthcare Organizatin: McGreevey, M. (Ed.). (2006). Patient as partners: Hw T invlve patients and families in their wn care. Oakbrk, IL: Jint Cmmissin Resurces, Inc. Institute fr Family-Centered Care