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Patient-centered Integrated Networks of Emergency Care: Consensus-based Recommendations and Future Research Priorities Prasanthi Govindarajan, MBBS, MAS, Gregory Luke Larkin, MD, MS, MSPH, Karin V. Rhodes, MD, MS, Gina Piazza, DO, Terri L. Byczkowski, PhD, Meredith Edwards, and Jill M. Baren, MD, MBE

Abstract Patient-centered care is defined by the Institute of Medicine (IOM) as care that is responsive to individual patient needs and values and that guides the treatment decisions. This article is a result of a breakout session of the 2010 Academic Emergency Medicine (AEM) consensus conference and describes the process of developing consensus-based recommendations for providing patient-centered emergency care. The objectives of the working group were to identify and describe the critical gaps in the provision of patient-centered care, develop a consensus-based research agenda, and create a list of future research priorities. Using e-mail and in-person meetings, knowledge gaps were identified in the areas of respect for patient preferences, coordination of clinical care, and communication among health care providers. Four consensus-based recommendations were developed on the following themes: enhancing communication and patient advocacy in emergency departments (EDs), facilitating care coordination after discharge, defining metrics for patient-centered care, and placing the locus of control of medical information into patients’ hands. The set of research priorities based on these recommendations was created to promote research and advance knowledge in this dimension of clinical care. ACADEMIC EMERGENCY MEDICINE 2010; 17:1322–1329 ª 2010 by the Society for Academic Emergency Medicine

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iven the increasing burdens placed on a decreasing number of emergency departments (EDs) in the United States, regional emergency care systems are stressed and have received poor grades from consumers and providers alike. The Institute of Medicine (IOM) describes the emergency care system to be ‘‘at the breaking point’’ and recommends building a

‘‘well coordinated, integrated regionalized system with increased transparency and accountability.’’1 To help achieve this goal and raise the quality of American health care, the IOM’s report Crossing the Quality Chasm further recommends that all ‘‘healthcare constituencies’’ adopt six basic aims: safety, effectiveness, patientcenteredness, timeliness, efficiency, and equity.2

From the Department of Emergency Medicine, University of California (PG), San Francisco, CA; the Division of Emergency Medicine, Department of Surgery, Yale University (GLL), New Haven, CT; the Division of Emergency Care Policy and Research, Department of Emergency Medicine, School of Social Policy and Practice, University of Pennsylvania (KVR), Philadelphia, PA; the Department of Emergency Medicine, Medical College of Georgia (GP), Augusta, GA; the Division of Emergency Medicine, Cincinnati Children’s Hospital Medical Center (TLB), Cincinnati, OH; the University of Pennsylvania School of Medicine (ME), Philadelphia, PA; and the Departments of Emergency Medicine and Pediatrics, University of Pennsylvania (JMB), Philadelphia, PA. Breakout session participants: Jill Baren, Kevin Baumann, Kevin Baumlin, Terri L. Byczkowski, Emily Carrier, Beth Cesta, John Edwards, Meredith Edwards, Bruce Geniak, Bob Gerhardt, Prasanthi Govindarajan, Leah Harvey, Bruce Janiak, Nick Jourlies, Gregory Larkin, Maryn McKenna, John Milne, Terry Mullins, Mary Newman, Arthur Pancioli, Gina Piazza, Karin V. Rhodes, Shawn Rodgers, Andrew Roszak, Erin Simon, and Todd Taylor. This work is the output from the Patient-centered Integrated Networks workshop conducted during the June 2010 Academic Emergency Medicine consensus conference in Phoenix, AZ: Beyond Regionalization: Integrated Networks of Emergency Care. Supported in part by a Mentored Clinical Scientist Development Award K08HS017965 (PG) from the Agency of Healthcare Research and Quality. Received July 22, 2010; revision received August 31, 2010; accepted September 1, 2010. Supervising Editor: Robert T. Gerhardt, MD, MPH. Address for correspondence and reprints: Prasanthi Govindarajan, MBBS, MAS; e-mail: [email protected].

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ISSN 1069-6563 PII ISSN 1069-6563583

ª 2010 by the Society for Academic Emergency Medicine doi: 10.1111/j.1553-2712.2010.00939.x

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While all six dimensions target various facets of quality, patient-centeredness is arguably the most basic, incorporating elements of safety, timeliness, effectiveness, and even equity. Several definitions exist for patient-centered care. While the IOM report features this to be care that is driven by patient needs, values, and preferences, the Institute for Patient- and FamilyCentered Care defines it as ‘‘an innovative approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care patients, families, and providers.’’3 They further define it in terms of four core concepts: dignity and respect, information sharing, participation, and collaboration.2,3 More recently, patient-centered care was defined as: ‘‘The experience (to the extent the informed, individual patient desires it) of transparency, individualization, recognition, respect, dignity, and choice in all matters, without exception, related to one’s person, circumstances, and relationships in health care.’’4 Although multiple definitions have been proposed, all of them encompass two fundamental characteristics: patient involvement and individualization of care.5 In addition to the above definitions of patient-centered care, the Picker Institute developed a framework for patient-centered care as a result of extensive research conducted in the late 1980s, for which patients were asked to provide objective reports on their experiences with care and what was important to them.6 They defined patient-centered care using seven distinct dimensions: 1) respect, 2) coordination and integration of care, 3) information and education, 4) physical comfort, 5) emotional support, 6) involvement of family, and 7) transition and continuity.7 An eighth dimension called ‘‘access to care’’ was added at a later date. While the initial work by the Picker Institute focused on the adult inpatient experience, the concept of patient-centered care was subsequently expanded to include family members and the entire health care system.3,8 Following the initial effort, expansion of the concept also included regionalized and coordinated emergency care.9,10 In response to the IOM’s recommendations for the provision of a coordinated, integrated, and regionalized care network, the Society for Academic Emergency Medicine (SAEM) created a task force to examine the issues related to regionalization of emergency care, whose work culminated in a consensus conference entitled ‘‘Beyond Regionalization: Integrated Networks of Emergency Care.’’ This article describes the proceedings and recommendations from a breakout session on patient-centered integrated networks during the 2010 Academic Emergency Medicine (AEM) consensus conference. The objective of this article is to report on the process wherein we convened a variety of emergency medicine (EM) experts, key contacts, and opinion leaders, to add new knowledge, identify critical knowledge gaps, and establish candidate research priorities related to patient-centeredness within an integrated system of emergency care. The resulting work summarizes the consensus-based recommendations and research agenda that provides future researchers and funding agencies with critical considerations and unanswered questions on the subject of patient-centered aspects of integrated emergency care.

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The steps involved in the development of consensusbased recommendations and a research agenda on patient-centered aspects of emergency care in an integrated health care system included generation of ideas, communication of ideas to the group members, discussion among the group members on the topic using Web-based communication, and prioritization of the topics. Later, we created consensus-based recommendations during a breakout session of the consensus conference. We identified and solicited participation from experts with interest in delivery of patient-centered care drawing upon the following resources: experts who participated in breakout sessions of 2005 AEM consensus conference on ‘‘The Ethical Conduct of Resuscitation Research;’’ membership on the SAEM Ethics Committee or the Ethics Interest Group of SAEM; physician representatives from the emergency care coordination center, an entity within the Department of Health and Human Services whose goal is to improve the delivery of emergency care; nonphysician representatives from academic institutions and survivor groups of cardiac arrest subjects who expressed interest in participating; and authors of papers published in EM journals on the topics of end-of-life issues in the ED, improving provider-patient communication in the ED, and patientcentered approaches to improving access to care within networks of health care. We employed a framework of domains of patientcentered care and hypothetical case scenarios illustrating gaps in delivery of patient-centered clinical care using e-mail (Table 1). The domains of care were also classified as micro level (patient level), meso level (intermediate), and macro level (systemwide) challenges within a regionalized system. The hypothetical case scenarios were constructed to highlight some of the challenges faced by patients, parents, and families during an encounter with the health care system such as disruption of their social support system during a transfer to a tertiary care center, lack of shared decision-making process, lack of respect for cultural differences, and patients’ and families expressed needs and deficiencies in support services. The domains of patient-centered care and the gaps within each domain as highlighted in the case scenarios are presented in Table 2. The next step involved open discussions among group members that led to development of preliminary recommendations for presentation to on-site participants of the patient-centered care breakout session of the consensus conference. RECOMMENDATIONS AND AGENDA FOR FUTURE RESEARCH Fourteen working group members were identified, of whom seven participated in the Web-based discussions before and after the consensus conference and five attended the conference breakout session in person. This information was presented again during the breakout session, which had a total of 14 participants. Based on online discussion and feedback, four recommendations closely related to the domains of patient-centered care were developed by the authors (PG, JB). These rec-

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Table 1 Case Scenarios That Were Used to Highlight Existing Gaps in Delivery of Patient-centered Care 1. Jane Doe is a non–English-speaking, working, single parent of three children. The youngest child was born with cerebral palsy and was being cared for by Jane’s family during her working hours. Jane Doe had to take her child to the nearest emergency department (ED) for seizure-like activity. Tests revealed an intracranial hemorrhage as the etiology. The local hospital did not have critical care or neurosurgical services and, therefore, the staff recommended transfer to a tertiary care children’s hospital approximately 100 miles away. The ED physician also recommended endotracheal intubation prior to transfer. Jane was distressed and had numerous questions about the recommendations, prognosis, and emergent need for intubation. She also wanted her family to be involved in the decision-making process but they could not be present due to the need to provide child care for the other children. Although the initial discussions occurred with the support of interpreter services, these were only intermittently provided during subsequent discussions. 2. QQ is a 59-year-old female with Type 1 diabetes mellitus and end stage renal disease requiring hemodialysis. Her primary care provider left the current practice and her access to urgent medical care was unavailable despite rising blood sugars and a progressive decline in vision. QQ did not want to go to the ED and mentioned this problem to her dialysis nurse. She was treated with insulin for hyperglycemia during dialysis and was told to follow up with her primary care doctor. A week later, she developed dyspnea on her way to dialysis and called 9-1-1. She was taken to the ED and was admitted to the hospital. An elevated HbA1c revealed poor control of diabetes requiring insulin adjustments. She was discharged home on a revised insulin regimen and primary care follow-up, which was already noted to be problematic. 3. MM, a Muslim male, was fasting during the month of Ramadan and did not take his medications for treatment of primary hypertension. Although he had many visits to the ED for treatment of hypertensive emergencies and was counseled to continue taking his medications, the underlying barrier to medication compliance was not recognized and addressed by his treating provider.

Table 2 Domains of Patient-centered Care Domains of Patient-centered Care 1.

Respect for patient values, preferences, and needs

2.

Integration and coordination of clinical care

3.

Enhanced communication and patient education

Gaps Within Each Domain of Patient-centered Care • Lack of support services (e.g., social workers or patient advocates) in EDs. • Language barriers, use of interpreter services for discussions with patients and families. • Lack of consistent and comprehensive communication to better explain prognosis, alternate treatment strategies, and need for transfer to a higher level of care. • Lack of an intact physician–patient relationship in a constantly changing system. • Integration of the emergency care system into networks of care to ensure smooth transitions from hospital based care to ambulatory care settings. • Lack of access to specialty care within local medical homes to facilitate comanagement by primary care provider and specialists. • Sharing health-related information with patients in their native languages. • Maintaining communication using available technology.

ommendations were presented to a larger audience during a working lunch, as well as posted at the end of the consensus conference for the participants to indicate their choice of recommendations for future research priorities. The recommendations developed by the authors and the proposed research agenda are presented. Recommendation 1: Patient-centered Regionalized Care Should Strive to Involve Multiple Providers Such That Communication, Patient Advocacy, and Coordination of Care Are Maximized Background . and Present Situation: In moving toward a regionalized patient-centered emergency care delivery system, it will be critical to incorporate clear, timely, and thorough communications throughout patient encounters. Often medical and technical skills and efficiency are emphasized in emergency care, but what satisfies patients goes far beyond these assumed expectations. Patients want and expect caring behavior and should have both emotional and psychosocial needs met. Patients also want and expect

the sharing of information. This sharing should occur between staff and patients and between staff such that all providers have a unified understanding of all aspects of the patient’s case. The care team should be able to provide consistent answers to questions to avoid confusion and the development of mistrust and dissatisfaction.11 Communications also need to be multidisciplinary. Quality communications can lead to improved satisfaction; aid in the creation of an environment of trust, respect, acceptance, and reduced anxiety; and decrease the likelihood of sentinel events compromising patient safety.12,13 Emergency physicians (EPs) must communicate with primary care and consulting specialist physicians and with nursing and other allied health professional staff members caring for patients across the regionalized emergency care continuum, because negative consequences of inadequate communication have been shown in published literature.14 Expansion of coordinated communication with patients and families has the potential to yield higher satisfaction and improved outcomes, especially with

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hospital transfers, which may occur in a regionalized system. While it is known that quality communication has been shown to influence outcomes, patient satisfaction, compliance, and recall of information during health care encounters, it is also evident to the EM community that the time needed to satisfy the emotional needs of a patient through patient–physician and physician–physician communication is often not present in the current system.15,16 The current health care payment model ‘‘incentivizes’’ rapid patient turnaround, rather than quality communication. Therefore, without structural changes in payments that reflect the added value of communication, or moving from a physician-centered approach to patient-centered approach by using nonphysician providers in the role of information providers, the goal of patient-centered health care may be limited or may never be realized on a national scale. Based on the discussion, the following research agenda was developed to focus attention to the need for objective measures to study patient-centered communication as well as to study the effects of behavioral interventions in the regionalized emergency care system. Proposed Research Agenda 1. Define metrics that measure patient-centered outcomes and patient satisfaction in an emergency care setting. 2. Do financial incentives ⁄ reimbursements for physician communication improve provider–patient communication in EDs? 3. Do communication sessions between providers and patients improve patient satisfaction metrics, and what is the optimal duration of these communication sessions? 4. Does a multidisciplinary team approach to communication in the ED improve patient satisfaction metrics? Recommendation 2: Asynchronous (i.e., Communication That Does Not Occur at the Time of the ED visit) Methods of Communication to Further Coordination of Care and Reduce Cost Should Be Explored Background . and Present Situation: Communication is at the heart of patient-centered care.17 Without optimal communication and integration, patients who might benefit from specialty consultation or highly technical invasive procedures may encounter difficulties accessing these services, with long wait times for appointments, delays in diagnosis, increased costs, and poor health outcomes.18,19 For uninsured or publicly insured patients, the barriers to specialty care access are amplified, with increased use of the safety net system (i.e., the ED and community based health centers).20–23 Health care management strategies, such as utilization review and ‘‘gatekeeping,’’ have not demonstrated any significant improvement in specialty care use.24,25 A large body of empirical evidence supports the primary care ‘‘medical home’’ model’s positive effect on quality, efficiency, and overall health.26,27 Additionally, we know that when specialists address patient care outside of their specialty areas, they provide lower-quality

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and less efficient care than primary care physicians.28,29 However, for patients with complex, severe, or uncommon health conditions, consultation with medical specialists indisputably offers significant clinical benefits.30,31 Promising evidence indicates that primary and specialist providers prefer coordinated comanagement roles, which point to more optimal health outcomes than those achieved when health care is delivered by either provider type alone.32–34 Health information technology has the potential to provide avenues for asynchronous communication between primary care and specialty care physicians, allowing patients to stay in their medical homes while increasing their access to specialty expertise.35–38 Information technology can also be used to improve communication of key information during or following an ED visit. Orienting patients and providing health education during the ED visit has been found to positively influence symptom resolution and clinical improvement, as well as increase the likelihood that patients will fill and take prescribed medications, follow recommendations for self-care, complete referrals, and avoid adverse complications.39–42 From a patient-centered perspective, satisfaction is the key metric used to evaluate the quality of communication. In particular, high-quality discharge instructions are related to overall patient satisfaction.43 Based on the gaps identified related to communication and integration of clinical care, the proposed research agenda proposes outcomes-based assessment of the methods of asynchronous communication between providers, as well as use of the nonphysician workforce in completing care that started in the emergency care setting. Proposed Research Agenda 1. Investigate and test innovative models of asynchronous communication between patients, primary care providers, and specialists, to identify which models improve care coordination, decrease duplicate testing, avoid readmission, and reduce costs. a. Identify whether integration of community networks with emergency care improves access to primary and specialty care, thereby providing a smooth transition from hospital-based care to outpatient care. b. As more hospitals and EDs extend their electronic medical records to community-based primary care providers, measure the effect of asynchronous communication between ED providers, primary care, and specialty providers on shared specialty knowledge between providers and timely patient access to specialty consultation. 2. Innovative models to be tested could include measuring the effect of and satisfaction with a patientdirected electronic interface during care in the ED. Patients could be allowed to input some of their own data, generate questions, and be kept up to date about tests that have been ordered, results of tests, and the expected course of care in the ED. The use of a discharge coordinator at the end of the ED visit, who assesses the patients’ understanding of their discharge instructions, reconciles medications, and assists with access to follow-up care,

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could be explored for the effect on repeat visits, readmission, patient satisfaction, and follow-up care. a. Identify whether improved and timely access to community clinic networks coordinated at the time of discharge from the emergency care setting reduces the number of nonemergent visits to EDs. Recommendation 3: Define Metrics to Measure Patient-centered Outcomes During and Following an ED Visit Background . and Present Situation: Validated measures are critical for advancing and improving patient- and family-centered care. They are important for testing quality improvement interventions and exploring the relationships between patient- and family-centered care and outcomes. There is no universally accepted definition of patient- and family-centered care, as discussed earlier, and this has hindered measurement and ultimately implementation of patient-centered care.5 Targeted research has been conducted in EM regarding selected components of family-centered care. A body of work in patient satisfaction with emergency care has shown that drivers of overall satisfaction are perceived wait time, providing information, pain control, and interpersonal skills. All are important drivers of overall satisfaction.44–50 Although clinical aspects of care that drive patient satisfaction have been recognized to some extent, the delivery of patient-centered emergency care presents unique challenges. Established relationships between patients and health care providers are often lacking, with visits being short and often intense. There is, however, a clear consensus that developing a culture of delivering family-centered care is a key quality outcome in EM.51 While the importance of family-centered care in EM has been discussed in the literature, there are no scientific studies that have comprehensively addressed what patient-centered care means to patients and families. It is not entirely known how the eight dimensions of patient-centered care that currently exist in the literature translate to emergency care.6 Also, providing patient- and family-centered care to children and adolescents poses additional challenges, including the arrival of a child to the ED who is unattended by family. Caring for adolescents requires a balance between honoring the privacy of the patient and communicating with the parent or guardian. Flow should be designed so that patients and their families are not separated except in cases where safety is a concern or the child’s needs dictate a private exam. In cases where children arrive unattended, it is important to facilitate timely reunification with the family.52 Another aspect of emergency care that has received attention in the literature is allowing family members to be present during invasive procedures and resuscitations. Studies have shown that families have positive attitudes toward family presence and want to have the option of being present during resuscitation and invasive procedures.53–56 There are, however, few studies that have addressed patient preferences for family presence. One study that surveyed patients concluded that patients feel that it is their right to have a family member present



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during resuscitation and ⁄ or invasive procedures.57 In the case of children, studies using survey methods have shown that parent preferences are to stay with the child, regardless of the level of procedural invasiveness.58,59 The delivery of family-centered care has been shown in other health care settings to be associated with not only increased patient and family satisfaction, but also increased adherence to prescribed medical regimens and health outcomes.5,60,61 In emergency care, comprehension and recall of discharge instructions, which are necessary but not sufficient for adherence, has been studied. Studies have shown that recall and comprehension can be low and how the discharging physician verbalizes instructions has a significant effect on patient comprehension.62,63 Otherwise, the effect of delivering high-quality patient- and family-centered care on outcomes has not been studied using rigorous scientific methods in emergency care. Proposed Research Agenda 1. What do patients and families want and value in their emergency care experience? 2. How do the existing dimensions of patient-centered care translate to emergency care? 3. How do we measure what is important to patients and families? 4. What is important to children and adolescents, and what measures indicate that the balance between honoring a child’s privacy while effectively communicating with his or her parent or guardian has been achieved? 5. How is the delivery of patient- and family-centered care associated with adherence to treatment plan and health outcomes? 6. How do we prioritize the study of patient-centered care by taking into account the level of importance to health outcomes and to patients? Recommendation 4: The Patient-centeredness of Integrated Care Networks Would Be Enhanced by Placing the Locus-of-control of Health Information Into Patient’s Hands, Rather Than Keeping All Information Under Exclusive Health System Control Background . and Present Situation: Confidentiality is a key concern of ED patients. Given that vulnerable ED patients have little control over where they go, who they see, or who is in the adjacent hallway gurney, they can be expected to be especially protective about what data they choose to reveal about themselves. Clearly, keeping information private and secure inside of a busy and crowded ED is challenging. Taking this challenge into a health system of multiple EDs and hospitals could multiply the threats to confidentiality exponentially. Electronic health records inside integrated health systems promise greater access to health information across regional networks and, hence, greater potential exposure and attendant threats to patient privacy and confidentiality than ever before. New models of protecting health information may be required to accommodate the needs of patients seeking ED services within large health care networks. A research agenda that is responsive to these modern threats to patient privacy

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in the information age is a key priority for keeping these new networks patient-centered. An important part of being patient-centered is being trustworthy. In fact, the etymological root of confidentiality is the Latin confidere, to trust. Indeed, patients expect and trust that EPs and the hospitals and networks within which they work are trustworthy and protective of their personal health information. Respecting confidentiality has long been acknowledged as a basic professional responsibility in health care, dating at least as far back as the Hippocratic admonition against any breaches of confidentiality.64 In the shadow of Hippocrates and electronic health care transactions comes HIPAA, the Health Insurance Portability and Accountability Act of 1996. These regulations were inspired by electronic data transfer and will be especially important for new networks to control and share data securely. Data servers, for example, will have to be firewall-protected and useencrypted data transmission, as well as have key backup and password protections to be HIPAA-compliant. Beyond both Hippocrates and HIPAA, however, EPs’ Principles of Ethics, under the Code of Ethics of the American College of Emergency Physicians (ACEP), further supports patient privacy and protection. Principle 5 states: ‘‘Emergency physicians shall respect patient privacy and disclose confidential information only with the consent of the patient or when required by an overriding duty such as the duty to protect others or to obey the law.’’65 While the new health care networks will create new opportunities for unwanted exposure and breaches of confidentiality, the aforementioned principles can help provide professional guidance as EPs seek ways to keep data flow a patient-centered and private process. It is currently unclear as to how various components within the new networks will privately and securely talk with each other and protect personal health information and patient interests. One method of securing information in a more patient-centered way is to empower consumers with passwords that will be used to unlock their data if and only if they authorize it to be released to a specific provider. Emergency exceptions would have to be incorporated for those patients who are being seen across networks, but are unable to initiate authorization due to their condition. Another possibility is to give patients their data electronically via secure e-mail or in another digital format so that they can have maximal access and control of it to use as they see fit. Such patient-centered control would be supported by the principle of respect for patient autonomy and would require that patients take more responsibility in educating themselves and storing their own health information. Precisely how new interconnected data systems will maintain a private and patient-centered perspective within data-driven, highly connected, and well-trafficked networks of care will be an important part of our research agenda going forward. Proposed Research Agenda 1. What are the critical elements of the electronic health record and transnetwork data system that should constitute the minimum dataset for sharing across hospitals?

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2. What are the optimal ways to allow for secure, time-limited, emergency access to data for patients who are unable to give permission or consent? 3. Does placing the control of information in patients’ hands lead to timely and efficient transfer of medical information for both patients and providers alike? 4. To compare the threats to security and confidentiality of medical information between patient-centered, hospital-centered, and network ⁄ system-centered approaches. 5. To test processes of enhanced security and privacy protection for network patients, including VIPs ⁄ celebrities, prisoners, minors, mental health patients, and other vulnerable subjects. CONCLUSIONS Using a consensus approach, we developed a set of recommendations for providing patient-centered emergency care. The research priorities created based on the recommendations have the potential to improve future funding, advance knowledge and thereby raise the quality of health care provided to all Americans. The authors thank Joanna Bisgaier, MSW (School of Social Policy), University of Pennsylvania, Pittsburgh, PA, for her assistance with writing a subsection of the manuscript.

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