2014 ACADEMIC PEDIATRIC ASSOCIATION RESEARCH AWARD

The Research Home: Partnering with FamiliesAlejandro Hoberman, MD

From the Division of General Academic Pediatrics, Children’s Hospital of Pittsburgh, Pittsburgh, PaThe author declares that he has no conflict of interest.Address correspondence to Alejandro Hoberman, MD, Division of General Academic Pediatrics, Children’s Hospital of Pittsburgh, 4401 PennAve, Pittsburgh, PA 15224 (e-mail: hoberman@chp.edu).

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I WANT TO express my gratitude to the members of theResearch Committee for considering me suitable to receivethis prestigious award.

All of us are familiar with the concept of the medicalhome for providing personalized health care for children.The Academic Pediatric Association has been one of itsprincipal sponsors and supporters.

In the medical home, care is accessible, continuous,comprehensive, and coordinated with subspecialists,nurses, and other nonphysician providers who play impor-tant roles, as well as with community agencies andschools. Care is compassionate and culturally sensitive,responsive to special needs arising from families’ back-grounds, language, and culture. As part of the medicalhome, we educate parents about their child’s condition.We strive to provide care that is personalized, ensuringthat the child and the parent feel important and special.We involve parents, and to the extent possible their chil-dren, in decision making. We believe that this conceptof care provides substantial benefit to the child and family(Table).

I would now like to spend the next few minutes discus-sing an analogous concept that my colleague Evelyn Reishas termed the research home. In the traditional approachto clinical research, individuals enrolled in studies areconsidered passive subjects in a protocol. To elevate chil-dren and their families to the level of partners, we changeour frame of reference. We note that many similarities existbetween the medical home and the research home. A dif-ference, however, is that the beneficiaries of the researchhome include not only the individual child and familybut also children, families, and society generally, as wellas health care workers at various levels who receive addi-tional training in order to carry out their research roles.

I believe that building a community of research-engagedparticipants and their families can lead to increasedresearch participation, as well as improved knowledgeand more ready adoption of research-based practices, andcan enhance trust in research and scientific behaviors.Let me share with you some of our efforts aimed at devel-oping this research home.

First, I will describe a practice-based research networkwe established in community pediatric offices. Pediatric

PittNet involves 200 pediatric providers and approximately200,000 covered children and adolescents. The network re-ceives infrastructure support from the Clinical Transla-tional Science Institute of the University of Pittsburgh.PittNet’s executive group includes researchers in the phys-ical health and mental health clinical programs, researchmanagers, administrators, and community practitioners.These practitioners have a strong voice in the program’soperation; they lead research initiatives within their ownpractices, decide in which practices what studies are appro-priate, and where research coordinators are placed. We, asacademic pediatricians, also serve as role models and earlyadopters for innovations that enhance quality of care. Thisprogram exemplifies both accessibility and coordination ofresearch efforts, involving physicians whom families knowand with whom a partnership of mutual responsibility andtrust exists.Let me tell you next about our effort to bring research as

close as we can to the family’s actual home (Fig. 1). Whenspecific imaging or procedures are required as part of astudy, research visits are necessarily conducted at the hos-pital. However, in many instances research visits do notrequire high-powered technology. Accordingly, we devel-oped a Mobile Research Service for parents who preferto have research visits at one of the children’s hospital sat-ellites, at a pediatric office closer to their home, or even atthe family’s home. The service consists of research coordi-nators from various divisions within the department of pe-diatrics, who are cross-trained for various protocols andconduct the research visit at the family’s home. Alwaysour goal is to keep the child and family at the center ofour thinking—as in the case of the medical home, our ef-forts are directed to the extent possible to accommodatethe needs of the child and the family, again providing ex-amples of coordinated and accessible care.Our trained research staff members carry out educa-

tional functions as well. For example, our coordinatorstrain nurse practitioners, physician assistants, and nursesat pediatric offices in proper technique for performingbladder catheterization. They are instrumental in teachingresidents (and faculty at times) proper technique forcerumen removal. And they instruct practice personnel inobtaining pulmonary function tests. The beneficiaries of

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this program are thus extended to include office health careworkers, whose educations are enhanced.

Let me mention next our creation of treatment centersanchored around research expertise in a couple ofareas—namely, urinary tract infection (UTI) and otitis me-dia. The UTI center (Fig. 2, www.chp.edu/utis) incorpo-rates quality improvement initiatives regarding diagnosis,imaging, and management for children with UTIs andwith bladder and bowel dysfunction, and it provides readyconsultation with specialists in nephrology, urology, andinfectious diseases. Laboratory and imaging results areimmediately communicated back to the family and the pri-mary care provider.

In otitis media, we have placed otoendoscopes at specificpractices where research is conducted and where they areused to capture digital images of the tympanic membrane(Fig. 3). These can be reviewed remotely, to enhance diag-nostic accuracy and to support appropriate management.Primary care providers often refer children failing antimi-crobial therapy for diagnostic tympanocentesis. Hereagain, enhanced, evidence-based, high-quality care resultsfrom coordination of services.

I would like to touch briefly on the informed consentprocess. We have tried to learn from parents what factorsinfluence their decision to participate in clinical research.1

In the Randomized Intervention for Vesicoureteral Refluxstudy, published the New England Journal of Medicine,2

120 parents, of whom half consented and half declinedparticipation, completed an anonymous survey. Parentswho declined consent had higher socioeconomic status,were more likely to have private health insurance, and ex-hibited more anxiety about their decision compared withconsenting parents. Consenting parents were more likelythan nonconsenting parents to perceive the researcher asprofessional. They had higher levels of trust and ofaltruism; they were more likely to perceive the potentialfor their child receiving enhanced care; they reflected bet-ter understanding of randomization, blinding, and the rightto withdraw; and they exhibited lower decisional uncer-tainty. Awareness of these factors should help researchers

tailor their discussions about consent with parents, andalso should enhance the overall quality of the informedconsent process and result in improved participation in pe-diatric clinical trials.In the same vein, and in the interest of further empower-

ing families, we are developing a software program calledeConsent Manager. This program includes, among otherelements, an institutional review board–approved consentdocument presented dynamically. It will permit videoconferencing with the researcher and will show animatedvideos about specific study procedures. It will also providealerts when a revised consent document is needed, and atcompletion, will trigger our data management system toinitiate collection of research data. Again, compassionateand culturally sensitive care with comprehensive parentaleducation will result.The research home needs to feel homelike. At initial

registration in the clinic, we enroll families in a Clinicaland Translational Science Institute–sponsored researchparticipant registry. Families receive a welcome packagewith a checklist of potential research areas of interest.Participation ensures that they will receive informationabout studies that might interest them and that matchtheir child’s diagnoses. Quarterly newsletters highlightspecific studies and communicate research findings. Wehelp parents set up in their cell phones a patient portalapp to enable notification of upcoming visits, test results,immunization records, preventive care reminders, medi-cation refills, and e-mail access to the office. Wewill alsoshare information about research studies being conduct-ed. Large screens in the waiting areas display a consistentvideo feed highlighting the importance of immunizationsand discussing how participating in research contributesto evidence-based medical care. The research homeshould provide an ongoing positive and inclusiveresearch message across the care continuum. Starting atthe prenatal visit, we want parents to expect that theywill be presented with opportunities to participate inresearch.

Table. Concept of Care

Medical Home Research Home

Care CareAccessible AccessibleContinuous ContinuousComprehensive ComprehensiveCoordinated CoordinatedCompassionate and culturallysensitive

Compassionate and culturallysensitive

Educational EducationalPhysician Physician

Known personally to the family Known personally to the familyPartnership with mutualresponsibility and trust

Partnership with mutualresponsibility and trust

Beneficiaries BeneficiariesIndividual child and family Individual child and family

Children, families, and societygenerally

Health care workers (education) Figure 1. Research Home.

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We have reframed the idea of being a passive subjectin a research study, as illustrated by previous consentdocuments that “invite you to participate in, or support,our study.” In contrast, in our interactions with parents,we address what we know about the condition theirchild has, what we have learned from recent research,what we do not know and accordingly where equipoiseexists, and how we intend to address this lack of knowl-edge through a high-quality and safe research program.We invite the family to become our partner, not oursubject.

In the research home, children and families are at thecenter of the cycle of clinical research (Fig. 4). Familieslearn how current practices arose from previous research,learn about findings from recent studies, and learn aboutopportunities for future participation; they influence ideasand clinical problems to be studied; they help us under-stand how to enhance recruitment and retention; and theyparticipate in ongoing research as informed, engagedmembers of the team in a partnership of mutual responsi-bility and trust with the investigator. Finally, in enteringthe research home, we believe that they also benefit from

Figure 2. Urinary Tract Infection Center (UTI Center; www/chp/edu/utis).

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the enhanced clinical care that is an integral part of manystudy protocols.

These concepts emerge from what I learned in researchkindergarten when David Keller and I were fellows inambulatory pediatrics and community medicine underJack Paradise, who received this research award exactly20 years ago. I remember watching Jack allocating suffi-

cient time to conduct a careful examination, sitting closeto parents at eye level to discuss clinical findings, whatwe knew, what we did not know, and what we were tryingto learn in order to provide better, evidence-based care fortheir children and future generations of children. His per-sonal touch and connection with families enabled trustand understanding that the research team would hold theparticipant’s best interest paramount, would providecomprehensive medical care, and would be available 24/7 for any concerns they might have. These encounters al-ways ended with a phrase I have stolen from Jack andcontinue to use: “At the end of the day, you [the parent]need to do whatever you feel most comfortable with foryour child.”I am indebted to all of our research participants and their

families; to my mentors in research, Jack Paradise, KenRogers, and Ellen Wald; to my chair, David Perlmutter;to faculty members of the Division of General AcademicPediatrics; to our community practitioner partners; and tomy entire research team, all of whom enable on a daily ba-sis this unique research program that I am most proud of. Ihave nowords to express my love and gratitude to my wife,Barbara, and my sons, Julian, Martin, and Andy, who haveexperienced over the past 25 years my absences and shortattention span as I struggle with grants and manuscript

Figure 3. Ear exam form including digital images of the tympanic membrane.

Figure 4. Cycle of clinical research.

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submissions, as well as parents’ calls at all hours on my cellphone. Thank you once more; I am truly honored to be heretoday.

ACKNOWLEDGMENTSSupported by the Clinical and Translational Science Awards from the

National Center for Research Resources, now at the National Center forAdvancing Translational Sciences, NIH (UL1RR024153 andUL1TR000005, to the University of Pittsburgh; by grants from theNIDDK, NIH (U01 DK074059, U01 DK074053, U01 DK074082, U01DK074064, U01 DK074062, and U01 DK074063); and by contracts

and grants from the NIAID, NIH (BAA-NIAID-DMID-NIHAI2009058and U01 AI066007).

REFERENCES1. Hoberman A, Shaikh N, Bhatnagar S, et al. Factors that influence

parental decisions to participate in clinical research: consenters vs

non-consenters. JAMA Pediatr. 2013;167:561–566.2. Hoberman A, Greenfield SP, Mattoo TK, et al. The RIVUR trial inves-

tigators. Antimicrobial prophylaxis for children with vesicoureteral re-

flux. N Engl J Med. 2014;370:2367–2376.

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