Safran Article Notes

8/14/2019 Safran Article Notes

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The collaborative edge: patient empowerment for vulnerablepopulationsCharles Safran *Clinician Support Technology, Newton, MA, USAHarvard Medical School, Boston, MA, USAAbstractObjective: The problems with access to care and the special needs for educational outreach for

disadvantage orvulnerable populations of patients require innovation. This paper describes Baby CareLink use ofinformationtechnology to support communication, consultation, and collaboration among colleagues as well aswith patients, theirfamilies, and community resources. Methods: In response to the educational, emotional andcommunication needs ofparents of premature infants and the clinicians who care for the infants and support the families, wedeveloped BabyCareLink, a secure collaborative environment. Baby CareLink provides a nurturing environment whereparents, eventhough remote from the Neonatal Intensive Care Unit, can actively participate in decisions surrounding

their babyscare. Results: In a southeastern hospital serving a mostly Medicaid population in a rural setting, morethan 300 parentshave used Baby CareLink more than 11 000 times during the past year. Despite the common wisdomthat Medicaidfamilies do not have access to the Internet, approximately 85% of the parents access Baby CareLinkfrom home, atwork, from the library or other public access point. The median use of Baby CareLinks from outsidethe hospital byparents is 17 separate sessions. In a city hospital in the midwestern US which exclusively serves aMedicaid population,experience has been equally encouraging. More than 70 parents have initiated more than 600 secure

sessions with BabyCareLink. In contrast to the rural hospital, only 35% of sessions have been initiated outside thehospital. Discussion:Experience with Baby CareLink suggests that families from all walks of life will use and benefit fromcollaborative toolsthat keep them informed and involved in the care of their children. The most significant barrier to widerdeployment isbandwidth limitations into the homes of most families. The care of premature infants is a greatexample of an areawhere medical knowledge and ability has grown dramatically, and where information andcommunication technologyholds enormous potential.

# 2002 Elsevier Science Ireland Ltd. All rights reserved.Keywords: Baby CareLink; Healthcare; Internet; Patient participation; Medicaid; Collaborativehealthware* Address: International Journal of Medical Informatics, One Wells Avenue Suite 201, Newton, MA02459, USA. Tel.:#/1-617-614-2600x123; fax: #/1-617-614-2525E-mail address: [email protected] (C. Safran).International Journal of Medical Informatics 00 (2002) 1 #/6www.elsevier.com/locate/ijmedinf1386-5056/02/$ - see front matter # 2002 Elsevier Science Ireland Ltd. All rights reserved.


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PII: S 1 3 8 6 - 5 0 5 6 ( 0 2 ) 0 0 1 3 0 - 2ARTICLE IN PRESS1. IntroductionThe past three decades have seen revolutionarychanges in healthcare but only evolutionarychanges in healthcare informationsystems. This must change if we are to realize

the full potential of collaborative care andshared decision-making. Providers, patientsand their families, and even payers mustleverage the power of information technologyto improve clinical care as well as satisfactionwith that care, and to reduce costs. Counterintuitively,perhaps the greatest potentialbenefit from increased use of informationtechnology in healthcare would be realizedby underserved and disadvantaged populations,who are not as disenfranchised by thedigital divide as is commonly thought [1].

The explosion of scientific knowledge inhealthcare during the past three decades hasbeen staggering, particularly concerning thebasic understanding of pathophsyiologicalprocesses at the genomic and proteomic level.This new knowledge has led to the subsequentdevelopment of therapeutics and biologicalsto alter these processes. The application ofmicro-technology to modern healthcare hasbeen nothing less than a miracle of modernmedicine.The progress with health information systems

during the past three decades has beenless impressive. While there has been a technologicalrevolution in our societies thanks tothe personal computer, wireless communication,increasing bandwidth, fast and cheapstorage media, and the World Wide Web, thewidespread adoption of information and communicationtechnologies in healthcare is occurringmore slowly.Much has been written about why thediffusion of information technology has beenslower in healthcare than in other industries

and previous working conferences on hospitaland health information systems have documentedmany barriers. While it is true thathealthcare is not banking, insurance, or manufacturing,we do have something to learnfrom the marketplace.Much of the immediate success of informationtechnology in the financial sector hasbeen due to its ability to replace repetitivetasks. As a result we all experience a different


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level of customer service not only at the ATMbut in many routine interactions with business.In a recent article in Information Week25 companies were highlighted as innovatorsin collaboration [2]. Only 1 of these companieswas involved in healthcare.The article suggests that: The next stage of

collaborative business (for healthcare) iswhere cooperation among customers (individuals,families, and communities), suppliers(pharmaceutical, device manufacturers andmedical supply companies), partners (nationalhealth systems, insurance companies andpayers), and colleagues (physicians, nurses,other care providers, and support personnel)lets companies (health systems) do business indifferent and better ways. Since effectivehealthcare requires communication, consultation,and collaboration among colleagues as

well as with patients, their families, andcommunity resources, should not healthcareinformation systems facilitate these basictasks?2. NICU stresses family, inhibitscommunicationThe care of premature infants is a greatexample of an area where medical knowledgeand ability has grown dramatically, and whereinformation and communication technologyholds enormous potential [3,4]. Medical success[5] has increased the challenge for families

[6].2 C. Safran / International Journal of Medical Informatics 00 (2002) 1#/6ARTICLE IN PRESSIncubators for premature infants were developedin the 1930s and supported a controlledenvironment for the infant. For themost part, the prematurity of the lung was thelimiting factor to survivability of the infant.Even modern ventilators with small rapid titalvolumes had problems expanding the small airexchanging units in the lung called aveolaeuntil the 1970s when surfactant was introduced.

Surfactant is a naturally occurringsubstance produced by the lung to decreasethe surface tension in these small air sacks.Only mature babies produce this substance.Concomitant with the introduction of improvedventilation was a dramatic improvementin fertility technologies. Pharmaceuticalswere developed to help stimulate ovulationand support tenuous pregnancies. Womenwere also able to receive already fertilized


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eggs to overcome biological barriers to conception.The result of these advances has beenthat pre-term birth rate has increased 9% since1990 and 23% since 1981 [7].The smaller infants lack the ability tocontrol their body temperature, breast orbottle feed, or sometimes breath without

machine support. These infants require thesupport of highly specialized doctors andnurses and the Neonatal Intensive Care Unit(NICU). Today children smaller than 500 g(approx 1 lbs) are cared for in the NICU andhave excellent prospects of growing up to benormal adults [5].NICU is truly a miracle of modern medicine,but it comes at a cost, both a dollar costand an emotional cost for families whoexperience prolonged and unexpected criticalcare needed for their children. In the US the

monetary costs of NICU and care for the firstyear of life of these infants exceeds 1% of theannual healthcare expenditure [8].The emotional costs, while hard to quantify,are profound as well. Parents hope forand expect to bring home a healthy baby.Many parents in their teens, twenties, thirtiesand even forties have had little previouscontact with the health system, much lesswith the type of high-tech medicine theyencounter in the NICU. A variety of emotionsfrequently overwhelms the new parent of a

premature infant in the NICU, the centralconcern, of course, being whether the childwill live or die. Parents often describe theexperience as an emotional rollercoaster.In addition families are faced with logisticalissues as well. If there are other youngchildren at home, who will care for themwhen the parents want to be in the NICU withtheir baby? If a parent has maternity orpaternity leave from work, do they use thistime while their baby is in the NICU orseveral months later when the child can

come home?During the prolonged hospitalization parentsmust assimilate a large body of knowledgerelevant to their babys care. Thisincludes not only information about routinebaby care, but also the special needs of theirhigh-risk infant. Their learning is often impededby fear and anxiety and they becomeoverwhelmed with information and advicefrom multiple sources.


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A study by Brazy showed that during thefirst week of their babys life, more than halfof parents spend at least 20 h seeking information[6]. Even after 4 weeks of hospitalization,more than one-third of parents performthe equivalent of a half-time job seekinginformation about and for their child. In

addition, and perhaps more alarming toparents, the need for information and problemswith its access do not end when thebaby goes home. Skills and knowledge gainedat one point may be lost or forgotten in thewhirlwind that can exist during the early daysfollowing discharge. Almost 40% of babiesdischarged from the NICU return within 30days to an emergency room, and half theseC. Safran / International Journal of Medical Informatics 00 (2002) 1#/6 3ARTICLE IN PRESSvisits are generally recognized as medically

unnecessary.3. Communication technology linked to higherfamily satisfactionIn response to the educational, emotionaland communication needs of parents of prematureinfants and the clinicians who care forthe infants and support the families, wedeveloped Baby CareLink, a secure collaborativeenvironment. Baby CareLink was originallyfunded by the National Library ofMedicine [9] and is now commercially supportedbe Clinician Support Technology

(Newton, MA).Baby CareLink provides a nurturing environmentwhere parents, even though remotefrom the NICU, can actively participate indecisions surrounding their babys care. Theimproved communication and customizededucation gives parents more confidenceabout overall care of the premature infant.As communication between parents and cliniciansimproves, quality of care also improvesdramatically.With Baby CareLink, parents monitor their

babies from home, schedule visits and findmedical information about their childs condition.From home, parents monitor theirbabies at any time, and check on the latestavailable information updates via Daily Reports,Doctors Notes and a Baby GrowthChart. Perhaps more important, from theprivacy of home at any time of day or night,a parent can research some 700 newbornrelatedsubject areas stored in a massive


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database containing clinical content and resourcessuch as baby care and safety referencematerial.Early every morning, parents log onto BabyCareLink to see an updated daily clinicalreport. Often they will find a message fromthe night shift nurse. Sometimes, the nurse

suggests a topic for parents to review likegiving your child a bath. With the click of amouse, the parent is directed to a topic relatedto their childs care. At the very least, everymorning a new digital picture may be postedon the secure website dedicated to each child.Baby CareLink also provides informationto expedite and streamline the hospital dischargeprocess. By the end of 2 monthsparents are more comfortable, confident andcompetent to take their small children homeknowing that they are still connected to the

NICU doctors and nurses. Baby CareLinkhelps parents through a time of crisis andprovides continued support throughout thefirst year of life.The results of a randomized study of BabyCareLink showed a 75% reduction in reportsof quality-of-care problems. The number ofrespondents answering positively to the question,Was there a problem with your childscare? was cut from 13 to 3% for respondentsusing Baby CareLink. Moreover, parentsreported better communication, higher levels

of satisfaction with care and tended to taketheir children home earlier.This study, with only 58 families, suggestsan unmet need with substantial clinical benefitsif such collaborative technology could bewidely deployed. The results suggest thatfamilies in crisis would embrace Internetbasedtools and services regardless of theirprior use of computers or the Internet, theirsocio-economic status, or their educationallevel, providing they can read English.4. Bridging the digital divide

Many believe that families who live on thefar side of the so-called digital divide haveother pressing health and social problems thatneed to be addressed before providing them4 C. Safran / International Journal of Medical Informatics 00 (2002) 1#/6ARTICLE IN PRESSwith Internet access and tools. In fact, physiciansand politicians have reportedly suggestedthat families should be given taxivouchers instead of Internet tools if access to


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healthcare and information is the problem.They have also suggested that parents shouldbe provided brochures and books on thesubject because they are free or relativelylow cost.These views reinforce stereotypes andignore the fact that traditional approaches to

healthcare for disadvantaged populationscontributes to the healthcare divide in ourcountry. Morbidity and mortality rates forinfants and children of Hispanic and AfricanAmericans is significantly higher than forwhite Americans and this gap is growing[7,10]. The problems with access to care andthe special needs for educational outreachrequire innovation. Recent data from thePew Internet and American Life Projectsuggest that access to the Internet by HispanicAmericans increased 19% in the past year;

faster than any other population segment(http://www.pewinternet.org).Experience shows, however, that the mostsignificant barrier to wider deployment isbandwidth limitations into the homes ofmost families. During the first 2 years ofoperation of Baby CareLink, getting broadbandinto the home required two-businessweeksto install and was not possible in somelocations [9]. Commercial support for BabyCareLink required adapting the technology toavailable bandwidth. Moreover, about 40% of

families of low birthweight infants live ininner cities and/or are on Medicaid, thefederally funded and state administered healthpayment system in the US. A second barrierto wide deployment is that a large proportionof this population speaks languages otherthan English, such as Spanish.With these known barriers in mind, BabyCareLink was redesigned to support broadpopulations of patients, including those whoare considered disadvantaged. Based upon thework of Brennan [11], Gustafson [12] and

others, Baby CareLinks content was re-writtento support multiple learning styles. Toaccommodate low comprehension down to asixth grade reading level (functional literacy),Baby CareLink offers multimedia presentationof content including streaming video,animation, and voice-over reading of content.The variety of presentation styles, simpleuniversal graphics, and a consistent frameworkfor navigation make Baby CareLink


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usable by those parents and clinicians with noprior Internet experience. A demonstration ofBaby CareLinks functions and capabilitiescan be accessed at http://www.babycarelink.-com.Baby CareLink has been deployed in avariety of health settings on the east coast

and midwest of the US in both rural andurban settings. Onsite access and onsite trainingare provided for families. Mothers andfathers are given separate passwords and canaccess Baby CareLink from outside the hospital.In a southeastern hospital serving a mostlyMedicaid population in a rural setting, morethan 300 parents have used Baby CareLinkmore than 11 000 times during the past year.Despite the common wisdom that Medicaidfamilies do not have access to the Internet,approximately 85% of the parents access Baby

CareLink from home, at work, from thelibrary or other public access point. Themedian use of Baby CareLink from outsidethe hospital by parents is 17 separate sessions.The nurses now use Baby CareLink as theprincipal discharge planning tool for allpatients.In a city hospital in the midwestern USwhich exclusively serves a Medicaid population,experience has been equally encouraging.More than 70 parents have initiated moreC. Safran / International Journal of Medical Informatics 00 (2002) 1#/6 5

ARTICLE IN PRESSthan 600 secure sessions with Baby CareLink.In contrast to the rural hospital, only 35% ofsessions have been initiated outside the hospital.However, staff report more frequent andlonger duration visits by families, more informedquestions from families, and fewerreturn visits of the children after they aredischarged.Experience with Baby CareLink suggeststhat families from all walks of life will use andbenefit from collaborative tools that keep

them informed and involved in the care oftheir children. While all parents might benefitfrom programs like Baby CareLink, parentsfrom populations that are considered vulnerablehave poorer health outcomes and consequentlyhave more to gain. While gains inhealthcare knowledge and medical technologieshave improved health outcomes, theeffective use of information technology holdsthe potential to further enhance care through


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better collaboration and communication. Betteroutcomes, lower costs, and higher patientand provider satisfaction will be the likelyresult.References[1] comScore Study Reveals Previously Unmeasured Characteristicsof US Online Hispanic Population (5/7/02, com-

Score Networks). Available from: http://www.comscore.com/news/cs_hispanic_050702.htm.[2] M. McGee, C. Murphy, 25 Innovators In Collaboration.InformationWeek December 12, 2001.[3] D. DAlessandro, P. Kingsley, Creating a pediatric digitallibrary for pediatric health care providers and families:using literature and data to define common pediatricproblems, J. Am. Med. Inform. Assoc. 9 (2) (2002) 161#/170.[4] D.M. DAlessandro, C.D. Kreiter, Improving usage ofpediatric information on the Internet: the Virtual ChildrensHospital, Pediatrics 104 (5) (1999) 55.

[5] D.K. Richardson, J.E. Gray, S.L. Gortmaker, D.A. Goldman,D.M. Pursley, M.C. McCormick, Declining severityadjusted mortality: evidence of improving neonatal intensivecare, Pediatrics 102 (1998) 893#/899.[6] J.E. Brazy, B.M.H. Anderson, P.T. Becker, M. Becker,How parents of premature infants gather information andobtain support, Neonatal Network 20 (2001) 41#/48.[7] B. Guyer, D.L. Hoyert, J.A. Martin, S.J. Ventura, M.F.MacDorman, D.M. Strobino, Annual summary of vitalstatistics, Pediatrics 104 (1999) 1229#/1246.[8] E.B. St. John, K.G. Nelson, S.P. Cliver, R.R. Bishnoi,R.L. Goldenberg, Cost of neonatal care according to

gestational age at birth and survival status, Am. J. Obstet.Gynecol. 182 (2000) 170#/175.[9] J.E. Gray, C. Safran, R.B. Davis, G. Pompilio-Weitzner,J.E. Stewart, L. Zaccagnini, D. Pursley, Baby Care-Link: using the internet and telemedicine to improvecare for high-risk infants, Pediatrics 106 (6) (2000) 1318#/1324.[10] R.L. Goldenberg, Low birthweigth in minority and highriskwomen. Patient Outcomes Research Team FinalReport. Agency of Health Care Policy and ResearchContract number 290-92-0055, 1998.[11] P.F. Brennan, The computer link projects: a decade of

experience, Stud. Health Technol. Inform. 46 (1997) 521#/526.[12] D.H. Gustafson, R.P. Hawkins, E.W. Boberg, F. McTavish,B. Owens, M. Wise, H. Berhe, S. Pingree, CHESS:ten years of research and development in consumer healthinformatics for broad populations, including the underserved,Medinfo 10 (Pt. 2) (2001) 1459#/1563.

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Safran Article Notes