Fabienne C. Bourgeois

Patients Treated at Multiple Acute Health Care Facilities: Quantifying Information Fragmentation

BACKGROUND Fragmentation of medical information places patients at risk for medical errors, adverse events, duplication of tests, and increased costs. We sought to quantify, at the population level, the burden of fragmentation in the acute care setting across the state of Massachusetts by measuring the rates at which individuals seek care across multiple sites. METHODS A retrospective observational study of all adult patients with at least 2 visits or hospitalizations to the emergency departments, inpatient units, and observation units in Massachusetts from October 1, 2002, to September 30, 2007. RESULTS The 3,692,178 adult patients who visited an acute care site during our study period accounted for 12,758,498 acute care visits. A total of 1,130,124 adult patients (31%) visited 2 or more hospitals during the study period, accounting for 56.5% of all acute care visits, while a subgroup of 43,794 patients (1%) visited 5 or more hospitals, contributing to almost one-tenth of all acute visits. Patients who visited multiple sites were younger (P < .001), more likely to be male (P < .001), more likely to have a primary psychiatric diagnosis (P < .001), and more frequently hospitalized (P < .001) and incurred higher charges than patients who used only a single site of care (P < .001). CONCLUSIONS A large number of patients seek care at multiple acute care sites. These findings provide one basis for assessing the value of an integrated electronic health information system for clinicians caring for patients across sites of care and therefore the return on investment in health information technology.

Whose Personal Control? Creating Private, Personally Controlled Health Records for Pediatric and Adolescent Patients

Personally controlled health records (PCHRs) enable patients to store, manage, and share their own health data, and promise unprecedented consumer access to medical information. To deploy a PCHR in the pediatric population requires crafting of access and security policies, tailored to a record that is not only under patient control, but one that may also be accessed by parents, guardians, and third-party entities. Such hybrid control of health information requires careful consideration of both the PCHR vendors access policies, as well as institutional policies regulating data feeds to the PCHR, to ensure that the privacy and confidentiality of each user is preserved. Such policies must ensure compliance with legal mandates to prevent unintended disclosures and must preserve the complex interactions of the patient-provider relationship. Informed by our own operational involvement in the implementation of the Indivo PCHR, we provide a framework for understanding and addressing the challenges posed by child, adolescent, and family access to PCHRs.

Peripherally inserted central catheters.

Peripherally inserted central catheters are increasingly used in the pediatric and adolescent population for long-term central access. This article reviews the indications, insertion techniques, and complications of peripherally inserted central catheter lines.

Impact of a Computerized Template on Antibiotic Prescribing for Acute Respiratory Infections in Children and Adolescents

Background. Computerized decision support (CDS) can potentially improve patient safety and guideline adherence. The authors developed an acute respiratory illness interactive template (ARI-IT) within an electronic health record (EHR) to manage pediatric ARIs and assessed the impact on antibiotic prescribing. Methods. They randomized 12 practices either to receive the ARI-IT or to the control group. Antibiotic rates among all eligible ARI diagnoses were compared among control and intervention ARI visits, controlling for clustering by clinician. Results. There was no difference in total antibiotic prescriptions between control and intervention clinics. Use of the ARI-IT significantly reduced antibiotic prescriptions (31.7% vs 39.9%; P = .02) and use of macrolides (6.2% vs 9.5%; P = .02) among visits compared with those eligible visits where it was not used. Conclusion. Use of the CDS reduced antibiotic prescribing and macrolide prescriptions among children with an ARI. Nonetheless, the low overall use resulted in an ineffective intervention.

Preserving Patient Privacy and Confidentiality in the Era of Personal Health Records

Although efforts to provide patients with increased access to their medical information through personal health records (PHRs) have accelerated in recent years,1 legal, ethical, and technical challenges have significantly impeded a meaningful implementation of PHRs among minor patients and dependent adults. Furnishing patients with an updated list of problems, medications, clinic notes, as well as laboratory and diagnostic studies results will undeniably improve transparency and allow patients to become better informed and involved in managing their own health care. However, although most PHRs are personally managed and individually maintained, the PHRs for children and dependent adults are not. Contingent on their developmental maturity or intellectual capacity, these patients require proxies to help access their PHR and manage their health information, and the control of the record may be either shared by both the patient and proxy or solely managed by the proxy. For children and adolescents this proxy role is generally provided to parents who retain this responsibility until the patient reaches legal adulthood (in most states at 18 years of age or emancipation) and is able to fully embrace complete ownership of his or her own health information. For dependent young adults this role is frequently filled by parents or other relatives, whereas for elderly patients this role may be carried out by a spouse, adult children, other relatives, or an unrelated caregiver. The configuration of most currently available PHRs allows both the patient (where appropriate) and his or her designated proxy complete access to the available data contained in the PHR. However, in many circumstances, … Address correspondence to Fabienne C, Bourgeois MD, MPH, Division of General Pediatrics, Boston Children’s Hospital, 300 Longwood Ave, Boston, MA 02115. E-mail: fabienne.bourgeois{at}childrens.harvard.edu

From development to implementation-A smartphone and email-based discharge follow-up program for pediatric patients after hospital discharge.

The purpose of this case study was to investigate opportunities to electronically enhance the transitions of care for both patients and providers and to describe the process of development and implementation of such tools. We describe the current challenges and fragmentation of care for pediatric patients and families being discharged from inpatient stays, and review barriers to change in practice. Care transitions vary in the complexity of the clinical and social scenarios and no one-size-fits-all approach works for every patient, provider or hospital system. A substantial challenge that providers who are designing and implementing digital tools for patients surrounds the complexity in building such tools to apply to such broad populations. Our case study provides a framework using a multidisciplinary approach, brainstorming and rapid digital prototyping to build an in-house electronic discharge follow-up platform. In describing this process, we review design and implementation measures that may further support digital tool development in other areas.

Empowering Informal Caregivers with Health Information: OpenNotes as a Safety Strategy

BACKGROUND Enabling family/friend caregivers with access to visit notes may help avoid errors, delayed diagnoses, or other ambulatory safety risks. Patient, parent, and caregiver perceptions of how shared notes affect safety behaviors and attitudes were studied in an exploratory study. METHODS To assess the impact of OpenNotes on safety, 24,722 patients with active portal accounts and ≥ 1 available visit notes during the prior year at an urban hospital were surveyed between June and September 2016. Surveys were sent to patient portal accounts, and respondents designated themselves as patients or caregivers. Although the hospital does not have formal proxy portal registration, some patients share access with their caregivers. RESULTS Of 24,722 portal accounts accessed during the study, 7,058 (28.5%) surveys were returned, with 150 (2.1%) participants identified as caregivers. Among patients who had tests and referrals, reading notes helped caregivers understand the reason for the test (96/120 [80.0%]) or referral (48/52 [92.3%]), remember to get patient tests done (66/120 [55.0%]), check (98/120 [81.7%]) and understand (98/120 [81.7%]) results, and remember patient appointments (36/52 [69.2%]). As a result of reading notes, 54.1% (59/109) of caregivers helping patients on prescription medications reported better assisting patients to take them correctly. Among note-reading caregivers, 53.7% (n =  72/134) trusted the clinician more (44.8% no change), and 58.2% (n =  78/134) reported better teamwork (41.0% no change) as a result of open notes. In total, 30.3% (n =  40/132) reported at least one mistake or possible mistake in the patients notes. Finding a possible mistake did not negatively affect trust or teamwork. CONCLUSION OpenNotes may enable caregivers with patient health information, answering the call to better support this critical group in the health care system and to engage patients and families in safety efforts.

Ethical Challenges Raised by OpenNotes for Pediatric and Adolescent Patients

Sharing clinic notes with patients and families provides many potential benefits, but it also introduces unique legal and ethical challenges for the pediatric and adolescent population. Sharing clinic notes online with patients and parents may yield many potential benefits to patients and providers alike, but the unprecedented transparency and accessibility to notes afforded by patient portals has also raised a number of unique ethical and legal concerns. As the movement toward transparent notes (OpenNotes) grows, clinicians and health care organizations caring for pediatric and adolescent patients wrestle with how to document confidential and sensitive information, including issues such as reproductive health, misattributed paternity, or provider and parent disagreements. With OpenNotes now reaching >21 000 000 US patients, pediatricians continue to query best portal practices. In this Ethics Rounds, we discuss 3 illustrative cases highlighting common pediatric OpenNotes concerns and provide guidance for organizations and clinicians regarding documentation practices and patient portal policies to promote patient engagement and information transparency while upholding patient and parent confidentiality and the patient- and/or parent-provider relationship.

OpenNotes: Toward a Participatory Pediatric Health System

Pediatricians have long been at the vanguard of innovation in care delivery, most recently leading efforts in participatory care in multiple areas, such as family-centered rounds. In participatory or collaborative care, patients and their families are properly empowered with information and invited to actively engage in their care. The American Academy of Pediatrics embraced this vision in a 2012 policy statement in which it elaborated that for effective participation by patients, parents, and providers, the sharing of complete health information is essential.1 The expansion of patient portals (electronic sources for patients to view their electronic health record data) has enabled the expedient sharing of more information than previously possible. Laboratory test results and diagnostic studies are part of this information, but clinical documentation (a synthesis of the provider’s thoughts and interpretation of all available data) is what completes the story. OpenNotes is an international movement that was founded in 2010 to realize this vision and advocate for patients and families to have easy access to provider documentation. Although many physicians who participated in OpenNotes were initially concerned about taking a longer time to write notes, they largely did not find this to be the reality after participating.2 Through accumulating research, patients report a better understanding of their care, and physicians endorse a stronger relationship with patients without a change in their practice.3 Ever since the passage of the Health Insurance Portability and Accountability Act in 1996, patients have had the legal right to their notes but have had to go through cumbersome steps to obtain them; OpenNotes is used to simplify this … Address correspondence to Chethan Sarabu, MD, Department of Clinical Informatics, Lucile Packard Children’s Hospital Stanford, 750 Welch Rd, Suite 315, Palo Alto, CA 94304. E-mail: csarabu{at}stanfordchildrens.org