5/19/16. Patient- and Family-Centered Care: Partnerships for Quality and Safety. System-Centered Care. In our time together... Family-Focused Care

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1 Patient- and Family-Centered Care: Partnerships for Quality and Safety Beverley H. Johnson, IPFCC President/CEO Kelly Parent, IPFCC Program Specialist for Patient and Family Partnerships and PFAC Network Administrator Wisconsin Hospital Association Wisconsin Dells, WI May 20, 2016 In our time together... System-Centered Care u Develop a shared understanding of the core concepts and strategies of patient- and family-centered care and how they can enhance quality, safety and the experience of care. u Describe ways to effectively partner with patients and families in improving the experience of care, quality, patient safety; in orientation and education of staff, clinicians, and trainees; and in research and evaluation. u Discuss highlights from the literature about the benefits of patient- and family-centered care. Patient-Focused Care Family-Focused Care 1

2 Patient- and Family-Centered Core Concepts u People are treated with respect and dignity. u Health care providers communicate and share complete and unbiased information with patients and families in ways that are affirming and useful. u Patients and families are encouraged and supported in participating in care and decision-making at the level they choose. u Collaboration among patients, families, and providers occurs in policy and program development and professional education, as well as in the delivery of care. Patient- and family-centered care is working "with" patients and families, rather than just doing "to" or "for" them. A Broad Definition of Family u In health care settings, patients are asked to define their families and how they will be involved in care and decision-making. u The American Academy of Family Physicians which defines family as a group of individuals with a continuing legal, genetic and/or emotional relationship. (American Academy of Family Physicians, 2009). Patient- and Family-Centered Care Patient and Family Engagement Patient Experience Why Patient- AND Family-Centered Care and not just Patient-Centered Care? Individuals, who are most dependent on health care, are most dependent on families Patient- and Family- Centered Care is the for the Experience of Care for ALL patients and families ALL of the time. The very young; The very old; and Those with chronic conditions. Families are allies for quality and safety; they often are the constant support across settings and assist with transitions of care. They can participate in the development of a care plan and support the patient in following the plan. 2

3 5/19/16 Why Patient- AND Family-Centered Care? Social isolation is a risk factor. Research is clear that isolating people at their most vulnerable times from the people who know them best places them at risk for medical error, emotional harm, inconsistencies in care, and costly unnecessary care (Cacioppo & Hawkley, 2003; Clark, 2003). The majority of individuals have some connection to family or natural support. Patient- and family-centered care provides the framework and strategies to transform organizational culture and improve the experience of care; enhance quality, safety, and efficiency; and create a better learning environment. Transforming Healthcare: A Safety Imperative (cont d) Transforming Healthcare: A Safety Imperative We envisage patients as essential and respected partners in their own care and in the design and execution of all aspects of healthcare. In this new world of healthcare: Organizations publicly and consistently affirm the centrality of patient- and family-centered care. They seek out patients, listen to them, hear their stories, are open and honest with them, and take action with them.... Continued Leape, L., Berwick, D., Clancy, C., & Conway, J., et al. (2009). Transforming healthcare: A safety imperative, BMJ s Quality and Safety in Health Care. Available at: The family is respected as part of the care team never visitors in every area of the hospital, including the emergency department and the intensive care unit. Patients share fully in decision-making and are guided on how to self-manage, partner with their clinicians and develop their own care plans. They are spoken to in a way they can understand and are empowered to be in control of their care. Associa8ons Between PFE Prac8ces and HCAHPS Scores andsafety Percentage points of pa8ents ra8ng a Sta8s8cal Significance hospital 9 or 10 PFE Prac8ce An international campaign to change the concept of families as visitors to one of welcome and partnership, according to patient preference, in 1,000 hospitals by Free tools and resources available at: T alk about your role with the patient and with yourself to staff and describe clinicians and your relationship other staff. Introduce participate in care. to the patient and how you d like to bserve changes (physical, behavioral, health care providers. emotional) in the patient and Ask staff what to routinely share. observations report them about the patient to they would like you O G (insurance, ather list of other critical brief medical providers, information history) and bring list of current it to the hospital. medications, nsure that you re present, if possible, decisions need at times when to be made. Be information a second set of and take notes. will be shared eyes and ears and for the patient! Ask questions ell staff if you have any concerns feels uncomfortable about the patient s condition or to you (e.g., an safety or if something an interaction unexpected change with staff). in treatment or medication, andle your schedule you can t be present, for coming to the hospital so that it s manageable make sure that know who/how staff members for you. When to contact for know how to information. reach you and that you nlist help from staff members with to participate whom you feel in care and ask comfortable. them to support Tell them how you want you as a care partner. eady yourself for the transition to home or community make sure your questions and care. Before you those of the patient be needed afterwards leave the hospital, have been answered. and what changes (e.g., medications, treatment, equipment, follow-upknow what will in the patient s condition should appointments) be reported to health care providers. E T H E R 6917 Arlington Road U Suite 309 U Bethesda, u Pre-assessment survey u PowerPoint template for leaders. u Educational exercises, with videos, for staff to use and adapt. u Information materials for patients/families/staff. u Metrics dashboard. u And more... MD U U As a family member or care edpartner, you are an important member r identifi of the health care team, TOGETHER with clinicians and other staff health care partne onethe or friend, the patient. Function in that role in er of otherand your loved er or ans and waysl memb that and are comfortable to both you and the patient whether you clinici memb an integra care, t patien As a family t, you are simplyensure presentbetter with the, patient theare the or you are participating in care patien er with and will by the to make decisions. or friend togeth ement helping up The questions which follow, grouped one speak some lovedcategories, care team, Your involv Your in eight d tohighlight as issues which other family staff. es. helme tant role other overw andimpor members care partners have identified as important. Use them and outcom sick or an safety, be too as ahave starting point as you work TOGETHER with health care staff. t, may ore, you supporter. t s patien patien and down informationthe as you think of it and share with staff. lf. Theref ate,jot for himse, advoc ts about share that insigh person and dual spokes edge and al history ers. Indivi ch medic your knowl e, and rs approa Trust care provid, lifestyl health to dos care partne values with eight other ation these in the inform families, and ways but hether during nt ts, ne w er patien in differe for everyo wheth roles d al unit, HER. their mende in a hospit TOGET recom or g are ency roomstay in workin emerg ES or long FAMILI FOR a short GUIDE Pa8ent Access to Informa8on 24/7 access to online pa0ent informa0on portal compared to no 24/7 access Full access to health records in hospital compared to par0al or no access High commitment to accommoda0ng lower English literacy compared to moderate or low commitment 1.8 pts. higher p< pts. higher p= pts. higher p<.05 Pa8ent & Family Inclusiveness 24/7 unrestricted access to pa0ents by family & partner across all units compared to some or no units 3.0 pts higher High levels of including pa0ents & families in nurse shiichange reports compared to moderate or no inclusion 1.3 pts. higher 2014 Silver Award Recipient p<.05 p<

4 Triple Aim Patient- and Family-Centered Care One of this 2015 report s eight recommendations is to partner with patients and families for the safest care (p.9). Among the partnership mechanisms suggested are 24-hour family presence and familycentered rounds in hospitals. Patient Experience Health of Populations "The most direct route to the Triple Aim is via patient- and family-centered care in its fullest form. Don Berwick June 5, 2012 Reducing Costs Best Care at Lower Cost: The Path to Continuously Learning Health Care in America The IOM report has 10 key recommendations; the 4 th recommendation states: Recovery Model of Care for Mental Health Services SAMHSA and the Veteran Affairs Standard of Care Involve patients and families in decisions regarding health and health care, tailored to fit their preferences. Patients and families should be given the opportunity to be fully engaged participants at all levels, including individual care decisions, health system learning and improvement activities, and community-based interventions to promote health. S-23 In a learning health care system, patient needs and perspectives are factored into the design of health care processes, the creation and use of technologies, and the training of clinicians Path-to-Continuously-Learning-Health-Care-in-America.aspx A Leader s Perspective u Chair of Radiology: We don t talk about it (PFCC) as a single project or a single activity. It has really become embedded into the fabric of our department, our faculty, our residents, and our staff. u Vision/Values u Facility Design u Patterns of Care u Information Sharing u Family Support Weaving Patient- and Family- Centered Concepts into the Infrastructure of Health Care Organizations u Measurement u Charting/Documentation u Linkages to Community u Quality Improvement u Human Resources u Professional Education 4

5 Patient and Family Engagement Criteria for Hospital Engagement Networks 2.0 (HENs) 1. Implementation of a planning checklist for patients known to be coming to the hospital (similar to CMS s discharge planning checklist); 2. Conducting shift change huddles and bedside reporting with patients and families; 3. Designation of an accountable leader in the hospital who is responsible for patient and family engagement; 4. Hospitals having an active Patient & Family Engagement Committee or other committees where patients are represented; 5. One or more patient representatives serving on the hospital Board of Directors. Weaving Patient- and Family-Centered Core Concepts into Organizational Infrastructure and PFE Metrics u Respect and Dignity u Information Sharing u Participation u Collaboration Patient- and Family-Centered Care Linked with Cultural and Linguistic Competency Respect and Dignity A welcome poster developed by patient and family advisors. Creating the Expectation for Partnership in Clinical Care Information Sharing systems/hospital/engagingfamilies/ strategy4/index.html 5

6 Alberta Children s Hospital Calgary, Alberta Sharing Medication Lists and Daily Plan of Care with Patients and Families James Haley Veterans Hospital, Tampa, FL Family Resource Centre, located adjacent to the medical library, located on the 2nd floor but visible from 1st floor entrance and open 24 hours per day. At the end of the shift on a daily basis, the night nurse prints out the list of medications for the next 24 hours and leaves it with the patient and family, if they are present. The list includes the name of the drug, dosage, times, and how it will be administered. The Daily Plan of Care is now being shared with the patient and family. Murray Alzheimer Research and Education Program (MAREP) 6

7 Creating the Expectation for Partnership in Clinical Care Participation Community Health Partners, Livingston, MT The Third Chair Most exam rooms have three chairs...a chair for the patient, a chair for the physician. Is the third chair a just in case chair, or is it a I d like you there chair? Does the third chair have an intention and a purpose for someone important to the patient? Bill Schwab, MD Providence Alaska Medical Center Anchorage, Alaska Welcome Packet You, your family, and your friends are all part of the team. Bedside Nurse Change of Shift Report WITH the Patient and Family Emory Healthcare, Atlanta, GA Patient and family advisors at Emory Healthcare partnered with nurses in implementing and sustaining this change in practice. This practice change led to specific reductions in harm. strategy3/ In 2008, Emory had NO patient and family advisors; it now has over 140 advisors meaningfully engaged. Patient and family advisors collaborated with nursing staff to implement bedside change of shift report as a collaborative process with patients and families. u Over a 24-month period, patient experience scores for overall nursing care and for how well pain was controlled both improved 40 percentile points. u Use of physical restraints decreased from 8.16% to 2.5%. u Reduced hospital acquired pressure ulcers from 6% to 2.5%. u Reduced patient falls (from 3.24 to 2.85 falls per 1000 patient days) and injury from falls (from.71 to.333 per 1000 patient days). 7

8 Patient- and Family-Centered Bedside Rounding A Comparison of Staff Perceptions of Rounding Processes, The Christ Hospital, Cincinnati, OH Staff stated that they understand the plan of care. Staff strongly agreed or agreed that the rounds improved communication between the team with families. Staff stated that the rounds increased their job satisfaction. ACE Unit Control Unit 100% 74% 100% 71% and 74% 100% 76% Gausvik, C., Lautar, A., Miller, L., Pallerla, H., & Schlaudecker, J. (2015). Structured nursing communication on interdisciplinary acute care teams improves perceptions of safety, efficiency, understanding of care plan and teamwork as well as job satisfaction. Journal of Multidisciplinary Healthcare, 8, MUSC Children s Hospital, Charleston, SC Suggested by a physician and family advisors working together in a process of changing and improving the way rounds with physicians are conducted. Collaboration Patient and Family Advisor Participation in Cardiac Clinic Design Collaboration means that no one interest group is always right. It means taking what you think, and what I think, and what someone else thinks, and coming up with something that works for everyone.. A collaborative design planning process saves dollars. Bev McConnell Crider From: Essential Allies: Families as Advisors 8

9 . Patient and Family Advisors Serve on QI Team Creating and Sustaining Effective Partnerships with Patients and Families Kelly Parent, Kelly Parent, IPFCC Program Specialist for Patient and Family Partnerships and PFAC Network Administrator Creating a Culture of Safety NPSF Report not only do all human beings err, but they err frequently and in predictable, patterned ways. And systems that do not adjust for these realities can end up exacerbating rather than eliminating error Engaging patients and families in health care decisions and keeping them informed throughout the course of care Atul Gawande, MD, Complications: A Surgeon s Notes on an Imperfect Science Right Thing Right Time Right Person Patients and families need to be actively engaged at all levels of healthcare. At its core, patient engagement is about the free flow of information to and from the patient. 9

10 What We Know Presence Experience of Care - Quality and Safety Effective Partnerships Participation Communication Self Management Improves Outcomes and Experiences Are You Seeing What I m Seeing? The Difficult Family Partnership at Point-of- Care Collaboration in Classroom and Boardroom Give my daughter the shot! Literature Review: Effects of Communication and Information Patient or parent input affected the medical decision-making discussion in 90% of cases - (ie history, pain management, discharge instructions, discharge medications and medical jargon) Rosen, P. et al. Family-Centered Multidisciplinary Rounds Enhance the Team Approach in Pediatrics. Pediatrics. 2009; 123(4): e Families who reported never or only sometimes feeling like a partner were 10 times more likely to be dissatisfied with services and ~4 times more likely not to get needed specialty services Denboba, D. et al. Achieving Family and Provider Partnerships for Children with Special Health Care Needs. Pediatrics. 2006; 118(4): Doctor-Patient Communication Gap Researchers at the Yale School of Medicine asked 89 patients and 43 doctors about the patients hospital experiences, and found startlingly different perspectives between the two groups. Archives of Internal Medicine, Aug 9,

11 Identifying Team Partners in Care u Staff Photo Postings u Wash and Wipe Boards u Uniform identification Family Centered Rounds Bedside Handoffs Rapid Response Team Discharge & Transition Planning Engaged Patients u Studies indicate that more engaged patients achieve higher levels of quality and safer care with fewer errors and safety concerns u Patient engagement also improves chronic disease self-management, thus reducing the overall cost burden such as decreasing hospital readmissions, etc. Scott, Richard, Patient Engagement Boosts Safety, Quality & Patient Self-Management. Insight On-Healthcare. Nov. 21, Gabe's Care Map: Cristin Lind, Mom, Illustrates What It Takes To Raise One Boy With Special Needs, Huffington Post, January 18, 2013 Self Management Ryhov Hospital provided training for patients interested in managing their own dialysis Result: 52% of renal patients on self-dialysis had fewer side effects and lower infection rates CS Mott - Pediatric Urology Perioperative Process Improvement Project hypospadias catheter and dressing care instruction while the child is in surgery Howard University Hospital provided diabetes patients with access to personal health records to assist them in monitoring clinical indicators pertinent to diabetic health Result Hgb A1c levels fell by 13% for patients participating in the program compared to an increase in levels for nonparticipating patients Community Engagement u Background: Partnership with 400 churches to support the transition from hospital to home. u Intervention: A trained church member liaison visits the patient to provide psychosocial support and prepare for post discharge support. u Results: u Lower mortality nearly half that of peers not participating in program (n=472) u Lower healthcare costs - $8700 saving/year/person (total: >$4 million) u Over a 27 month period - admissions (159 to 101), readmission (37 to 17), patient days (1268 to 772), LOS (8 to 7.6) and hospital charges ($127,922 to $74,819) all fell after enrollment (n=50) u Higher patient satisfaction among program participants 11

12 Metrics Press Ganey Custom Questions 1. Family was able to participate in decisions about child s care 2. Staff explained their roles in child s care 3. Staff supported family throughout child s healthcare experience 4. Staff respected having family members/friends with child during care 5. Staff respected family s cultural/spiritual needs Research & CQI Projects Effective Partnerships Advisor Collaboration on Quality and Research Projects Engaging Advisors in Research & CQI Projects Research Patient Centered Outcomes Research CQI Blue Cross Blue Shield of Michigan u Provide another set of eyes and ears with real-world experience, wisdom and passion u Recognize that healthcare is only one part of life and know what they want to accomplish in life u Help staff and faculty communicate information in palatable language and disseminate information effective ways u Share what feels right and what matters Provide feedback about proposed research, discuss issues, resolve questions/ concerns Communicate study details to community/ patient organizations Serve as language lens; review materials and scripts Communicate study findings and generate new ideas 69 Stages of Projects Identifying and prioritizing the issues Generating the questions Study design Study implementation Data analysis and conclusion Disseminating the findings Advisor Venues: Town Halls Focus Groups PFAC Virtual Advisor on Project Group: Develop scripting Recruit Enroll Collect Data Advisor Venues: Town Hall Focus Group PFAC Metrics to Evaluate Effectiveness of Advisors, HRET, 2015 u Project/Committee Productivity u Number of ideas generated u Diversity of ideas u Length of time for implementation of projects u Number of successful projects u Costs of Projects u Patient Satisfaction u Patient Safety and Quality u Reduction in HAI u Engagement in RCA u Readmissions u Exacerbation of Illness 12

13 Education Education Effective Partnerships Patient Education Educational Materials Safety Messages Peer Mentor Programs Staff/Student Education New Employee Orientation Staff Training/ Grand Rounds Student Education Peer Curriculum Training Modules u Making the most of a clinic visit u How to schedule multiple appointments u How to manage medications u Partnering with healthcare providers u Coordinating care between Packard and community services u How to parent in the hospital u Who s who on your health care team u Learning about your child s health condition u Effective ways to communicate with care providers u Understanding legal rights u Working with the schools Compliments of Karen Wayman, PhD Patient and Family Advisors as Teachers Serve as actors in role plays Coach students through debrief what went well, what did not go so well Match student with a patient mentor living with a chronic illness or condition to understand illness through the patient s eyes Find commonality Simulation and Role Playing Coaching and Mentoring Presentations and Panels Facilitators Use story to create human connections and emotionally move and motivate us to action In-person and video Create a space to find a commonality Discuss how shared stories affect us as people and future physician Metrics How Do You Change a Culture? u Increase Confidence u Increased Satisfaction u Reduced ED Visits u Decreased Length of Stay u Reduced Exacerbations of Illness u Decreased Calls to On- Call Staff Leadership Support Grassroots Campaign 13

14 Culture and Readiness Assessing HRO by Patient Family Engagement Culture High Reliability Organization Transparency Consistent Language and Behavior Readiness Leaders are ready to support Staff are ready to partner with patients and family members Staff is ready to become PFCC champions beyond personal practice u Does staff respect the fact that patient/family often know more than anyone in the room? u Does staff take the time to learn what matters most to patient/family? u Are patients and families encouraged to report misses and near misses? u Are patients/families engaged in gap analyses across the continuum? u Are patients/families engaged in debriefs when something goes wrong? Word Choices What s In a Word? Traditional u Visitors u Allowed/Permitted u Visiting Hours u Give Inform Improved u Family/Friends u Engaged/Welcomed u Family Presence u Share Information v=cnhybjbqg-y Signage Policies Info Sheets/Flyers - Website Language of Partnership Engagement in Safe Care Practices Safety 1. We want to see you and you to see us. Windows along the hallway should remain clear to allow staff to see and monitor your child. 2. Safe medication delivery will need your nurse s full attention. Your nurse will be happy to answer questions before or after medication preparation. Healing Environment 1. Your child s rest is important to their recovery. Please watch your child for signs that they need to rest and help turn off lights and quiet any noise in the patient room. 2. Family and visitors are welcome. Please be aware that the number of visitors for a patient depends on the patient's medical needs, unit activity, and available space. u A patient identifies the wrong drug or dose at the pharmacy. u A parent reports that his/her child looks funny days before a diagnosis of cancer is made. u A patient s his/her provider about a surgical site wound that just does not look right. u A 10-year old patient states that the medicine smells different u A spouse shares his thoughts during medical rounds u A medical team asks the patient/family to join them when discussing the root cause of an adverse event 14

15 Engagement in Event Reviews Engagement on RCA and Event Reviews Interview family No involvement PFCC staff attendance Access Advisors Patient /family participation References and Resources n Abraham, M., Ahmann, E., & Dokken, D. (2013). Words of Advice: A Guide for Patient, Family, and Resident Advisors. Bethesda, MD. Institute for Patient- and Family-Centered Care. n Agency for Healthcare Research and Quality. (2014, December 17). Advancing the practice of patient- and family-centered care in hospitals. Retrieved from /12/17/advancing-practice-patient-and-family-centeredcare-hospitals n Agency for Healthcare Research and Quality. (2013 June). Guide to Patient and Family Engagement in Hospital Quality and Safety. Available at hospital/engagingfamilies/patfamilyengageguide/ n American Academy of Pediatrics, Committee on Hospital Care, & Institute for Patient- and Family-Centered Care. (2012). Patientand family-centered care and the pediatrician s role. Pediatrics, 129(2), References and Resources (cont d) n American Hospital Association 2012 Committee on Research. (2013). Engaging Health Care Users: A Framework for Healthy Individuals and Communities. Chicago: American Hospital Association. Available from: engaging/index.shtml n American Hospital Association, Institute for Family-Centered Care. (2004). Strategies for leadership: Patient and family-centered care. Chicago, IL: American Hospital Association. Washington, DC. Available from: Safety/strategies-patientcentered.html n American Society for Healthcare Risk Management. (2010). Patient- and family-centered care: Making a good idea work [Special issue]. Journal of Healthcare Risk Management, 29(4). n Brown, S. M. (2015). We still lack patient centered visitation in intensive care units. BMJ, 350:h792 doi: /bmj.h792 References and Resources (cont d) n Children s Hospital Hires Parents To Promote Patient- and Family- Centered Care, Leading to Eightfold Increase in Patient and Family Advisors and Higher Satisfaction available at: innovations.ahrq.gov/profiles/children-s-hospital-hires-parentspromote-patient-and-family-centered-care-leading n Crocker, L., & Johnson, B. (2014). 2 nd Ed. Privileged Presence: Personal Stories of Connections in Health Care. Boulder, CO: Bull Publishing Company. n Dokken, D., Parent, K., Ahmann, E. (2015). Family presence and participation: Pediatrics leading the way and still evolving. Pediatric Nursing, 41(4), n Dokken, D. L., Kaufman, J., Johnson, B. H., Perkins, S. B., Benepal, J., Roth, A.,... Jones, A. (2015). Changing hospital visiting policies: From families as visitors to families as partners. Journal of Clinical Outcomes Management, 22(1), n Eisler, R., & Potter, T. M. (2014). Transforming Interprofessional Relationships:A New Framework for Nursing and Partnership-Based Healthcare. Indianapolis, IN: Sigma Theta Tau International. References and Resources (cont d) n Fulmer, T., & Gaines, M. (2014). Partnering with patients, families, and communities to link interprofessional practice and education [Conference recommendations]. New York, NY: Josiah Macy Jr. Foundation. Retrieved from publication/partnering-with-patients-families-and-communities-tolink-interprofessional. n Gasparini, R., Champagne, M., Stephany, A., Hudson, J., Fuchs, M.A. (2015). Increased family presence and the impact on patientand family-centered care adoption. The Journal of Nursing Administration, 45(1), n Gausvik, C., Lautar, A., Miller, L., Pallerla, H., & Schlaudecker, J. (2015). Structured nursing communication on interdisciplinary acute care teams improves perceptions of safety, efficiency, understanding of care plan and teamwork as well as job satisfaction. Journal of Multidisciplinary Healthcare, 8, n Health Research & Educational Trust. (2015, March). Partnering to improve quality and safety: A framework for working with patient and family advisors. Chicago, IL: Author. Retrieved from 15

16 References and Resources (cont d) n Herrin, J., Harris, K. G., Kenward, K. Hines, S., Joshi, M. S., Frosch, D. L. (2015). Patient and family engagement, BMJ Quality and Safety Journal, 0,1-8. doi: bmjqs n Howrey, B. T., Thompson, B. L., Borkan, J., Kennedy, L. B., Hughes, L. S., Johnson, B. H., DeGruy, F. (2015). Partnering with patients, families, and communities. Family Medicine, 47(8), n Institute of Medicine of the National Academies. (September 2012). Best care at lower cost: The path to continuously learning health care in America. Washington, DC: The National Academies Press. Retrieved from record_id=13444 n Institute for Patient- and Family-Centered Care: n Johnson, B. H. (2016). Promoting patient- and family-centered care through personal stories, Academic Medicine, 19:3, 1-4. n Johnson B. H., Abraham, M. R. (2012). Partnering with Patients, Residents, and Families A Resource for Leaders of Hospitals, Ambulatory Care Settings, and Long-Term Care Communities. Bethesda, MD: Institute for Patient- and Family-Centered Care. References and Resources (cont d) n Josiah Macy Jr. Foundation. (2014). Partnering with patients, families, and communities: An urgent imperative for health care [Conference Recommendations]. New York, NY: Author. Retrieved from n Leape, L., Berwick, D., Clancy, C. Conway, J. Gluck, P., et al. (2009). Transforming healthcare: A safety imperative, Quality and Safety in Health Care, 18, n Macdonell, K., Christie, K., Robson, K., Pytlik, K., Lee, S. K., & O Brien, K. (2013). Implementing family-integrated care in the NICU: Engaging veteran parents in program design and delivery. Advances in Neonatal Care, 13(4), doi: /anc. 0b013e31829d8319 n Minniti, M. & Abraham, M. (2013). Essential Allies: Patient, Family, and Resident Advisors; A Guide for Staff Liaisons. Bethesda, MD. Institute for Patient- and Family-Centered Care. References and Resources (cont d) n National Working Group on Evidence-Based Health Care. (August, 2008). The role of the patient/consumer in establishing a dynamic clinical research continuum: Models of patient/consumer inclusion. Available from W.G.PatientConsumerBklt2(8-6).pdf" n Ness, D. L., & Johnson, B. H. (2014). Dying in America: A constructive step forward and an opportunity to deepen partnerships with patients and families. Annals of Medicine, 162(3), doi: /M n Norman, N., Bennett, C., Cowart, S., Felzien, M., Flores, M., Flores, R., Haynes, C., Westfall, J. M. (2013). Boot camp translation: A method for building a community of solution. Journal of the American Board of Family Medicine, 26 (3), " n Reinersten, J. L., Bisognano, M., & Pugh, M. D. (2008). Seven leadership leverage points for organization-level improvement in health care (2 nd ed). Cambridge, MA: Institute for Healthcare Improvement. (Available at References and Resources (cont d) n Weinberger, S. E., Johnson, B. H., & Ness, D. L. (2014). Patient- and family-centered medical education: The next revolution in medical education? Annals of Internal Medicine, 161(1), doi: / M n Weingart, S. N., Simchowitz, B., Eng, T. K., Morway, L., Spencer, J., Zhu, J., et al. (2008).The you CAN campaign: Teamwork training for patients and families in ambulatory oncology. The Joint Commission Journal on Quality and Patient Safety, 35(2): n Wynia, M. K., Von Kohorn, I., & Mitchell, P. H. (2012). Challenges at the intersection of team-based care and patient-centered health care: Insights from the IOM Working Group, JAMA, 308(13), n Wynn, J. D., Draffin, E., Jones, A. & Reida, L. (2014).The Vidant Health quality transformation, Joint Commission Journal for Quality and Patient Safety, 40(5),