RESEARCH ARTICLE Open Access

A systematic review of patient access tomedical records in the acute setting:practicalities, perspectives and ethicalconsequencesStephanie N. D’Costa1, Isla L. Kuhn2 and Zoë Fritz2*

Abstract

Background: Internationally, patient access to notes is increasing. This has been driven by respect for patientautonomy, often recognised as a primary tenet of medical ethics: patients should be able to access their records tobe fully engaged with their care. While research has been conducted on the impact of patient access to outpatientand primary care records and to patient portals, there is no such review looking at access to hospital medicalrecords in real time, nor an ethical analysis of the issues involved in such a change in process.

Methods: This study employed a systematic review framework in two stems, to integrate literature identified fromtwo searches: Medline, CINAHL and Scopus databases were conducted, (for (1) hospitalised patients, patient accessto records and its effects on communication and trust within the doctor-patient relationship; and (2) patient accessto medical records and the ethical implications identified). The qualitative and quantitative results of both searcheswere integrated and critically analysed.

Results: 3954 empirical and 4929 ethical studies were identified; 18 papers representing 16 studies were identifiedfor review (12 empirical and 6 ethical). The review reveals a consensus that our current approach to givinginformation to patients – almost exclusively verbally – is insufficient; that patient access to notes is a welcome nextstep for patient-centred care, but that simply allowing full access, without explanation or summary, is alsoinsufficient. Several ethical implications need to be considered: increased information could improve patient trustand knowledge but might transfer an (unwelcome) sense of responsibility to patients; doctors and patients haveconflicting views on how much information should be shared and when; sharing written information mightincrease the already significant disparity in access to health care, and have unforeseen opportunity costs. Theimpact on medical practice of sharing notes in real time will also need to be evaluated.

Conclusions: The review presents encouraging data to support patient access to medical notes. However, sharinginformation is a critical part of clinical practice; changing how it is done could have significant empirical and ethicalimpacts; any changes should be carefully evaluated.

© The Author(s). 2020 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, andreproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link tothe Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

* Correspondence: Zbmf2@cam.ac.uk2THIS Institute (The Healthcare Improvement Studies Institute), CambridgeUniversity, Clifford Allbutt Building, Cambridge CB2 0AH, UKFull list of author information is available at the end of the article

D’Costa et al. BMC Medical Ethics (2020) 21:18 https://doi.org/10.1186/s12910-020-0459-6

BackgroundIt is unusual for patients to request access to their med-ical hospital records, despite their legal right to do so[1]. The U.K. government mandated that patients shouldbe able to readily access their electronic medical recordby 2018, a promise which has not been fulfilled, mostlydue to logistical difficulties [2]. This mandate was builton respect for patient autonomy as a primary tenet ofmedical ethics: patients should be able to access their re-cords to be fully engaged with their care. Access to re-cords allows patients to be more informed which mayincrease opportunities for them to question their careplans and request second opinions.Internationally, patients are more readily able to access

their notes, and there has been evidence of positive out-comes in maternity records [3]; in primary care [4, 5];for specific diseases, [6, 7] and for specific interventions[8, 9]. A 2003 (Ross and Lin) [10] and 2007 (Ferreiraet al) [11] review of the literature in these fields foundthat patient access was unlikely to cause harm and canimprove doctor-patient communication and relations;the latter review also identified the potential for patientsto spot and correct mistakes in their records.More recently, the use of patient ‘portals’ – an elec-

tronic route to targeted parts of the medical record –has become more common. Several systematic reviewson the design, use and impact of such portals have beenconducted [12–14]. Patients are generally enthusiasticabout the possibility of accessibility, and positive or neu-tral health outcomes were observed. However, it wasnoted that clinician contact for portal users increased,and, perhaps related to this, disparity of uptake amongdifferent ethnic and socioeconomic groups was noted.While these reviews demonstrate significant bodies of

research on the impact of patient access to outpatientand primary care records and to patient portals (seeTable 1 for a summary table of the systematic reviews inthese domains), there is no such review looking at accessto hospital medical records in real time, nor an ethicalanalysis of the issues involved in such a change inprocess.Real-time access to medical records (particularly as

they are currently written) may have unintended conse-quences on patient care both directly and indirectly –for example, by altering how things are recorded in thenotes.In this paper, we focus on adult access to notes in the

medical acute care setting. We define this as the envir-onment which comprises an adult medical patient’spresentation to hospital and their initial (up to 5 days)in-patient stay. This is a busy environment in which asick patient generally only receives verbal communica-tion, and in which decisions need to be made quickly,often by or with clinicians unfamiliar to the patient. In

this context, access to notes may serve a different pur-pose than in the chronic disease or outpatient setting.Our aim was to review empirical papers relating to pa-tient access and contribution to medical records, andconsider the ethical issues raised by this proposedchange in practice to fully appreciate the consequencesof access to notes in real time.Our review therefore set out to answer two questions:1) What studies have there been of sharing records

with medical patients in the in-patient setting, and inparticular on the impact on trust and communicationbetween patients and doctors?2) What are the ethical issues associated with sharing

records with medical patients?

MethodsThis study employed a systematic review framework intwo stems, to integrate literature identified from twosearches surrounding our research questions. This en-sured a robust, replicable searching strategy from whichwe could extract data clearly defined by inclusion andexclusion criteria (an initial attempt to search ethical is-sues relating to sharing medical records in acute careyielded no relevant results). We conducted critical inter-pretive synthesis [16] to the data extracted, an applica-tion of qualitative enquiry that allowed us to criticallyanalyse and integrate both the qualitative and quantita-tive results of both searches into main themes.

ProtocolThe review was registered on the PROSPERO database(registration ID CRD42018114125). PRISMA guidelineshave been used to inform the methodology and write up.

Identification of studiesA replicable search strategy was developed to answerour two research questions, using two literaturesearches, on the Medline via OVID, CINAHL via Ebscoand Scopus databases (See Appendix 1 for the full searchstrategies for both searches). Searches were run on the23rd February 2018. Reference lists of included studieswere reviewed for additional papers. A complete recordof all identified articles was kept on a managed referencedatabase.

Literature search of the empirical dataSearch words, phrases and subject headings (includingMeSH) were used to search for literature surroundingthe topics of (1) hospitalised patients, (2) patient accessto records and (3) its effects on communication andtrust within the doctor-patient relationship.The inclusion criteria limited the literature to studies

about adult, hospitalised patients in the acute setting.Limits were applied for English language papers published

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Table 1 Summary of systematic reviews conducted on overlapping literatures

Author and Title of paper Sample Size and setting Nature of Analysis Summary of results

Electronic Patient Portals:Evidence on HealthOutcomes, Satisfaction,Efficiency and Attitudes.(Goldzweig et al., 2013) [12]

46 included articles: 18 on healthoutcomes, 7 on efficiency/utilization, 10 on patientcharacteristics, 19 on attitudesAll outpatient setting assessingportals as a way of accessinginformation. Predominantly US(43/46)

3 systematic literature searches ofPubMed and Web of Science spanningdifferent timeframes for the effects ofportals on patient care. Includedreference -mined articles assessedindependently by two reviewers.

• Examined health outcomes forspecific diseases (e.g. effect ofintervention on HbA1C levels indiabetics) rather than patientcommunication and doctor-patientrelationship.

• Health outcomes, satisfaction andadherence: positive or neutraloutcomes in intervention patientscompared to control patients in RCTsfor patient portals for those withchronic conditions; possibleconfounding factors, as portals usedin conjunction with intensive orpharmaceutical-led casemanagement.

• Efficiency or Utilization: either nodifference or increased cliniciancontact.

• Patient characteristics: disparitybetween racial and ethnic groups,literacy or education levels andmedical problems in regard towhether the patients were likely touse portals or not, suggesting this is abarrier to accessible portal use.

Inpatient Portals forHospitalized Patients andCaregivers: A SystematicReview (Kelly et al., 2017) [13]

17 studiesAll inpatient setting, focusing ondesign of portals. PredominantlyUS (15/17)

Systematic literature search of PubMed,Web of Science, CINAL Plus, Cochraneand Scopus for patient portals,engagement and inpatient care.

Examined the design, use andimpact of patient portals.• Portals provided targeted access toinformation for patients and werevaried in their design and content.

• Patients generally found portals easyto use and have a positive experience,feeling more engaged and in control;they suggested future portals shouldhave more information, personalisedmedication and results in real time.

• Professional concern over givinginformation without interpretationand overuse of messaging tools.

Patient engagement in theinpatient setting: a systematicreview. (Prey et al., 2014) [14]

17 studiesAll Inpatient setting focusing onpatient engagement.Predominantly US (16/17)

Systematic literature search of PubMed,ACM Digital Library, IEEE Xplore andCochrane databases for patientengagement, involvement of healthI.T. in an inpatient setting (Englishlanguage only)

Examined what interventions toimprove patient access engagementvia health information technologywere available.• Five groups were identified:entertainment, general health I.T.delivery, patient-specific informationdelivery, advanced communicationtools and personalized decisionreport.

• Noted limited research on impact onhealth outcomes and cost-effectiveness.

The effects of promotingpatient access to medicalrecords: a review (Ross & Lin,2003) [10]

30 studies including medicaloutpatients (14 studies), inpatients(2 studies), obstetric (5 studies)and psychiatric patients (5studies).Predominantly UK (13/30) and US(13/30)

Systematic literature search ofMEDLINE and HealthSTAR searching forthe effects of patient access to noteson patient participation and advocacy.Reference mining was also used.

Examined effects of patient accessto records over a period of time onthe patient, the doctor-patient rela-tionship and medical practice.• Patient access to medical records wasunlikely to cause harm and generallyhad modest benefits, especiallysurrounding doctor-patient communi-cation, seen clearly in three trials inobstetric intervention patients.

• Patient satisfaction was generallyhigh, despite some patients findingthe records worrisome, upsetting ordifficult to understand.

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since 1997 were included. Exclusion criteria consisted ofpaediatric, disease-specific studies and those focussed onconfidentiality and data sharing. Studies relating to the de-sign of a system allowing patient access to records werealso excluded.

Literature search of the ethical issuesThe second search consisted of a range of terms for (1)patient access to records and (2) ethical implications.This search therefore did not specify hospitalised pa-tients or the effect access to notes has on communica-tion and trust and was run from inception to the searchdate. The exclusion criteria remained the same.

Study selectionFor each search, the titles and abstracts of referenceswere screened by one reviewer (either SD or ZF) who se-lected those appropriate for full text analysis. 100 refer-ences in every 1000 were independently screened byboth reviewers to assess for concordance and preventdrift, refining the inclusion criteria if needed. Any

references where there was ambiguity were discussed byboth authors and a decision made. Reference lists of in-cluded studies were screened by both authors. The re-sults of the study selection are shown in Fig. 1.

Data extraction and risk of biasSD extracted the following data from the included studies:setting, nature of study, sample size, nature and contributionof participants, nature of analysis and summary of results,shown in Table 1. Both researchers conducted thematicanalysis on the papers, identifying four major themes.

Planned methods of analysisMeta-analysis was inappropriate for the heterogenous na-ture of the search results and therefore a critical interpret-ive synthesis [16] was undertaken to discover emergingthemes from the literature. Analysis of the papers wasfollowed by extraction of data and discussion between thetwo authors, to consider the themes underlying these re-sults. The ethics literature, which encompassed a widerrange of settings than the empirical literature, was

Table 1 Summary of systematic reviews conducted on overlapping literatures (Continued)

Author and Title of paper Sample Size and setting Nature of Analysis Summary of results

The patient perspective onthe effects of medical recordaccessibility: a systematicreview (Vermeir et al., 2017)[15]

12 studies, majority focussing onoutpatients [9] and the rest weremixed outpatient and inpatient[3].Predominantly US (8/12)

Systematic literature search of PubMed,Web of Science, Cinahl and CochraneLibrary for effects of communicatingmedical record information on patientparticipation and the doctor-patient re-lationship. The studies were assessedfor methodological quality and thosescoring average and high ratings wereincluded.

Examined patient use of andperspectives on medical recordaccessibility• Many patient participants wereknowledgeable and enthusiasticabout their right to access, howeveronly a minority actually consultedtheir medical files, with fear forconfusion and anxiety being found asthe main reasons for not doing so.

• Some patients were disappointed inthe written assessment of theirpathology once they had accessedtheir medical records; there wereprivacy concerns as to who is able toaccess their personal ‘sensitive’information.

• In the intervention studies identified,the majority had a positiveexperience, generally experiencingless anxiety and feeling reassuredwith improved communication withtheir physician.

Why facilitate patient accessto medical records (Ferreiraet al., 2007) [11]

14 articles all focussing onpatients in the outpatient setting.Predominantly US (7/14) and UK(6/14) studies.

Systematic literature search of Medlineand Scopus researching the effects onmedical practice of patient access torecords. Thematic analysis of theresults was undertaken and then eachstudy was graded depending on howrelevant they were to each theme.

Examined the effect of patientaccessibility to medical records onmedical practice:• Positive effect on the patient(promoting reassurance and reducinganxiety) and the perception of thepatient-doctor relationship (breakingdown barriers).

• In practice, patients identified andcorrected mistakes in their medicalrecords in general practice. Therewere mixed results regardingadherence, and the system requiredfamiliarity with the Internet whichmay disadvantage some users.

D’Costa et al. BMC Medical Ethics (2020) 21:18 Page 4 of 19

examined for themes which would be applicable acrosshealth care settings. An iterative process was utilised,examining and grouping them into overarching themesthat both organised and illustrated the findings of thereview.

ResultsOf the 3954 empirical and 4929 ethical studies identifiedthrough the two searches, 18 papers representing 16studies were identified for review (12 empirical and 6ethical) see Fig. 1.Two studies used questionnaires [17, 18]; four used in-

terviews or focus groups [19–24]; two used mixedmethods [25, 26]. One note analysis, [27] one portal ana-lysis [28] and one clinical trial [29, 30] was conducted, andsix analysis articles were identified [31–36]. One empiricalstudy came from each of Israel [19], Norway [20, 21] andCanada [18]; the rest originated from the USA. No paperslooked at perspectives of the multidisciplinary team. Thedata extraction is summarised in Table 2.Four main themes emerged on analysis: Impact on pa-

tient care; Conflicts between patient and physician per-spective; divergent views on doctor and patient roles;cultural differences and societal risks.

Impact on patient careSharing notes was seen to empower patients by improv-ing trust and knowledge [30], facilitating patients towork with doctors [28]. Communication of written in-formation was considered superior to verbal explana-tions; one patient was reported as saying “Yeah, theycome and update me but..I mean I can’t keep track of itall. That’s why I like this.” [24] No studies revealed ob-jective changes in care such as reduced length of stay.Access to their own notes might enable patients to cor-rect inaccuracies, [21, 36] although this raised the possi-bility of patients feeling responsible if something wasmissed: [20, 32]“patients could end up feeling they are to blame for

their own poor outcomes.” [32]Some participants thought written information

might ‘facilitate verbal communication’. [26] Otherswere concerned that a written note might supplantface-to-face interaction [22]; this did not manifest inthe only study to trial giving patients a written dailysummary [17].

Conflict between doctor and patient perspectivesPatients and doctors had discordant perceptions of howaccessing the medical record might affect care: whilst

Fig. 1 PRISMA Article Selection Flow chart

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Table 2 Summary of literature included. A summary of the data extracted from the included studies, themed around nature ofstudy and research question answered.

Author and Titleof paper

Setting Nature of Study(includingwhetherparticipants arereporting onexperiential orhypotheticalviews)

Sample Size Nature of Analysis Summary of results Limitations

Questionnaires Giving Doctors’Daily ProgressNotes toHospitalizedPatients andFamilies toImprove PatientExperience(Weinert, 2017)[17]

Universityhospital

Questionnaire ofpatient andhealthcareproviders’response to a trialgiving patients adaily copy of‘progress notes’(Experiential)

Patient, familymembers andproviders(attendings,residents ormedicalstudents)involved.Pilot study: 12patients, 6providers, 70notes2nd study: 73patients, 6providers, 677notes given of2011 notesprinted, (33.7%)

Quantitativeanalysis of 2survey results(one for patientsand familymembers, one forproviders)

Most patients(76%) respondedfavourably toreading notes as itimproved theirunderstanding andfeeling of control.Some providers(9–28%) thought itaffected theirpractice: they weremore careful aboutphrasing thingsand it lengthenedthe consultationmildly. Themajority ofproviders (up to72%) disagreedwith the idea thatit affected practiceand 3–16% wereneutral.There wereoccasions wherewhat was writtencaused discordbetween patientand doctor,ultimately leadingto betterunderstanding: apatient with severepain complainedshe did not have‘mild pancreatitis’and the doctorexplained it wasbiochemically mild.

The sample sizeand duration ofthis study limitedits externalvalidity.

Is Canada readyfor patientaccessibleelectronic healthrecords? Anational scan.(Urowitz et al.,2008) [18]

Emails toCEOs ofgeneral andacutemedicalhospitals inCanada

Questionnairesgiven to CEOs tomeasure nationalreadiness foradoption andimplementationof EHRs. Inaddition, theCEOs were askedto forward thequestionnaireonto chiefs ofmedicine, nursingand informaticsstaff or otherrelevant people.(Experiential)

No patientswere involved.83 CEOssurveyed.Only 3% ofthese CEOs hadassessed staffperceptionsdirectly.

Statistical analysisand descriptivestatistics.

Interviewparticipantsincluded 9.4%CEOs, 3.8% Chiefsof Medicine, 11.3%Chiefs of Nursing,7.6% ChiefInformationOfficers and 67.9%listed as ‘Other’(the majority ofwhich had moreadministrativeroles: managers,privacy officers,etc).54.2% of hospitalshad some sort ofEHR. Barriers topatient access

Medical staffwere surveyedminimally in thisstudy, with theemphasis onthose in moremanagerial roles.The responserate may beinaccurate as thedistribution ofthe questionnaireby each CEO wasnot tracked.

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Table 2 Summary of literature included. A summary of the data extracted from the included studies, themed around nature ofstudy and research question answered. (Continued)

Author and Titleof paper

Setting Nature of Study(includingwhetherparticipants arereporting onexperiential orhypotheticalviews)

Sample Size Nature of Analysis Summary of results Limitations

were identified ashospital finances,patient computerliteracy andclinician buy-in.Staff perceptions(data from 3hospitals only):Less than 25%thought patientswant access toEHR and only 16%thought they’dwant lab results, incontrast with otherCanadian studiesthat say patients/public would likeaccess. Only 3.6%said staff would bewilling and eagerto provide access,28.6% said staffwould be hesitantbut willing toprovide access,17.9% thoughtstaff wouldsupport partialaccess.

Interviews &Focus groups

Building andtesting a patient-centric electronicbedside communi-cation center(Dykes et al., 2013)[22]

Acute carein 2academicmedicalcentres, USA

Focus groups toidentifyimprovements forthe electronicprototype.Pilot testingelectronicbedsidecommunicationprototypeincludingscheduled events,daily routine andspace to writenotes.(Experiential, realtime access)

No healthcarepractitionerswere involved.Focus groupsincluded formerpatients, familycaregivers andhospitalvolunteers whohad recentlybeen inpatientsor caregiversPilot testing andinterviews weredone by 11participants (8inpatients and 3family members).

Mixed methods:Focus groups andbedsideinterviews

The majority ofpatients said theywould use thedevice. An 82 yearold said she doesnot want ‘onemore thing toworry about’ buther family saidthey would use it.A 90-year-old pa-tient said he wouldprefer to speak tohumans directly.Accessibility issueswere noted: mostpatients older than64 had troublewith the touch-screen hardware.Recommendationsincludedvideoconferencingtools and voicerecognition.

The method ofthe analysis ofthe interview andfocus groupresults isunknown. Thepilot testing isalso limited by itssmall sample size.

Designing Patient-Centric Informa-tion Displays forHospitals.”

EmergencyDepartment,USA

Trial ofimplementing in-room displaysbased on medical

18 patients, 11visitors (allfemale),16 physicians.

Semi structuredinterviews withpatients, familyand healthcare

17 patientsoverwhelminglypositive about theposter display

The study giveslimited detailabout thestructure and

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Table 2 Summary of literature included. A summary of the data extracted from the included studies, themed around nature ofstudy and research question answered. (Continued)

Author and Titleof paper

Setting Nature of Study(includingwhetherparticipants arereporting onexperiential orhypotheticalviews)

Sample Size Nature of Analysis Summary of results Limitations

Proceedings ofthe SIGCHI Confer-ence on HumanFactors in Com-puting Systems(Wilcox et al.,2010) [24]

records.(Experiential, realtime access)The design ofthese displaysinvolvedcomments andobservations fromcollaboratingphysicians.

Patients wereinterviewed afterdeploying theprototype, thenagain when allfurther medicalupdates hadbeen made totheir prototype.

practitioners. (which includeda health profile,vitals, what’s next,medications, careteam) because ithelped them keeptrack, especially the‘What’s Next’section. Oneparticipant said:“yeah, they comein and update mebut, I mean, I can’tkeep track of it all.That’s why I reallylike this.”Physicians werealso positive butexpressedconcerns overdisplay of labresults and vitals.

method ofanalysis of eachinterview,particularly forvisitors andphysicians.Patients wererecruited for thestudy bycollaboratingphysicians, whichmay haveintroducedselection bias.

Why do peoplewant a paper copyof their electronicpatient record(Wibe et al., 2010)[20]

2 hospitalsin NorwayThree papersfrom onestudy.

Interviews withNorwegian adultpatients whohave requestedaccess to theirnotes(Experiential,retrospectiveaccess)

A conveniencesample of 17volunteersfollowing aninpatient stay:16 female, 1male.No physicians orother healthcarepractitionerswereinterviewed.

Qualitativecontent thematicanalysis

A main priority forpatients is thesecuretransmission ofinformationbetweenhealthcarepersonnel; theywant to take itupon themselvesto be the‘messenger’.

The populationof this studyrepresents lessthan 1% of thoseadmitted in thesame time frame.The retrospectivenature of thisstudy may haveincreased therecall bias.

Patients readingtheir healthrecords - whatemotional factorsare involved?(Wibe et al., 2009)[37]

Distrust is animportantmotivator forasking for recordaccess, but somehave morepractical reasons –e.g. insurance.Discrepancies(mixing up recordsof 2 differentpatients) and lackof openness causeirritation andresentment inindividual healthcare worker and inthe system.

Lay people’sexperiences withreading theirmedical record(Wibe et al., 2011)[21]

Very few patients(1%) of thoseadmitted tohospital requesttheir records – andthis research

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Table 2 Summary of literature included. A summary of the data extracted from the included studies, themed around nature ofstudy and research question answered. (Continued)

Author and Titleof paper

Setting Nature of Study(includingwhetherparticipants arereporting onexperiential orhypotheticalviews)

Sample Size Nature of Analysis Summary of results Limitations

interviewed onlythis selectedsample.Patient reasons forrequesting recordsinclude desiring asense of control,takingresponsibility andexamineinaccuracies.Problems readingthe recordincluded patientsfeeling like theyweren’t beingtaken seriously andthe recordstigmatising theirlifestyle problems.

Note Analysis Patient-centricmedical notes:Identifying areasfor improvementin the age of openmedical records(Lee et al., 2017)[27]

Tertiary carecentre, USA

Retrospectiveanalysis of patientnotes looking atbarriers to patientaccess(Hypothetical)

337 inpatientadmission notes.No directinformationfrom patients orhealthcarepractitionerscontributed tothe results.

Statistical analysisof characteristicsof interest (e.g.offensive medicallanguage)identified innotes.

The notes thatcreate confusion,generate offenseor impactperceptions/professionalismwere those thatused medicalwords which mayhave judgementalconnotations in(e.g. ‘complains’,‘claims’, ‘denies’),typographicalerrors and use ofjargon.

This study didnot look atpatients directlyaccessing notes,but rather whatwithin the notescreates barriersto access. Thesecharacteristicswere determinedby clinicians,rather thaninvolvingpatients.This study wasconducted at asingle site whichreduces itseternal validity.

PortalEvaluation

Implementation ofacute care patientportals:recommendationson utility and usefrom six earlyadopters.(Grossman et al.,2017) [28]

6 hospitalsin the USA.

Evaluation ofimplementingacute care patientportals.(Experiential, realtime access)

6 hospitalportals serving1065 patientsoverall.Literature reviewof 27 studieslooking at thecharacteristics ofacute carepatient portals.

Analysis ofcharacteristics,usage and toolsof each portal.Literature reviewof other studieson patientportals.

The purpose ofmost portals is toengage patientsand facilitatetransition tooutpatientmanagement,clinicianrelationship,transparency ofinformation andpatient safety.They take a patientcentric approachwith a care planand daily schedule,and tools tofacilitatemessaging andaccessing results;

The studyfocuses of largeacademicmedical centresmeaning theresults may notbe valid acrosssmaller hospitals.Not all theportals focussedoncommunicatingmedical advice;some were usedfor non- medicalinformation.

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Table 2 Summary of literature included. A summary of the data extracted from the included studies, themed around nature ofstudy and research question answered. (Continued)

Author and Titleof paper

Setting Nature of Study(includingwhetherparticipants arereporting onexperiential orhypotheticalviews)

Sample Size Nature of Analysis Summary of results Limitations

half showed thediagnosis.Problems withportals were alsoidentified,including timing oflab result releaseand the sharing ofdifferentialdiagnoses. Therewas a concern thatportals would leadto ‘overwhelmingamounts’ ofpatient contactneeds.

Clinical Trials The effect oftablet computerswith a mobilepatient portalapplication onhospitalizedpatients’knowledge andactivation. (O’Learyet al., 2016) [29]

Controlledtrail ina largeteachinghospital

Patient portalwith personalhealthinformation (e.g.names andpictures of teammembers,scheduled tests,and list of activemedications)presented on 15iPads, given to100 interventionpatients.(Experiential, realtime access)

100 interventionpatients,102 controlpatients.Each physicianin charge of thecare of eachpatient was alsointerviewed.

Structured andsemi-structuredinterviews withpatients and theirphysicians separ-ately – responsesrecorded verba-tim and com-pared to each-other and themedical record.Short formmeasuring PatientActivation (PAM-SF) qualitatively.

A largerpercentage ofinterventionpatients (56%)named 1 or morephysicianscompared to thecontrol group(29.4%). Similarly,more interventionpatients (47%)could name therole of one ormore physicianscompared to thecontrol group(15.7%).There was nodifference inpatient groupsknowledge of alltheir planned testsor procedures.Patient activation(the level ofknowledge, skillsand confidence apatient has inmanaging theirown healthcare)from the PAM-SFscore remained un-changed betweenthe groups.Of those who hadaccess to theportal, 57% usedthe portal morethan once a day.The majority ofpatients thought itwas useful andeasy to use.

Study did notassess healthliteracy of theirpatients and waslimited toEnglish-speakingpatients. Thestudy was con-ducted on onesite only.

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Table 2 Summary of literature included. A summary of the data extracted from the included studies, themed around nature ofstudy and research question answered. (Continued)

Author and Titleof paper

Setting Nature of Study(includingwhetherparticipants arereporting onexperiential orhypotheticalviews)

Sample Size Nature of Analysis Summary of results Limitations

Reasons for lack ofpatient activationcould includeterminologyinterpretation andlack of time.Furtherimprovementsinclude working toengage patientsmore and makeportals moreaccessible.

MixedMethods

A tablet computerapplication forpatients toparticipate in theirhospital care.(Vawdrey et al.,2011) [25]

CardiacStep-downunit, USA

Mixed methods:semi-structuredinterviews andquestionnaires.(Experiential, realtime access)

5 patientsinterviewed (allmale)Clinicianreception of thepilot study wasnoted althoughnot assessedformally.

Analysis usingsubscales forsatisfaction andusefulness withinthe questionnaire,and anecdotalevidence frominterviews.

Patients foundportal helpedthem engagemore with theircare and form amore personalrelationship withthe MDT. None ofthe patients raisedprivacy concerns.

Small populationof study on onespecialised unit,so results maynot be consistentacross all acutecare settings.

Acute care patientportals: aqualitative studyof stakeholderperspectives oncurrent practices.(Collins et al.,2017) [26]

Acute carein 5academicmedicalcentres, USA

Mixed methods:semi-structuredinterviews, focusgroups, site visitsand question-naires of expertleaders at eachsite to evaluateperceptions ofpatient portalsand identify re-quirements of pa-tient portals inthe acute caresetting.(Hypothetical)

84 participantsin totalincluding onaverage:3.3 PFAC(patient familyadvisory council)members4.5 researchers3.8 Informationsystem leaders3.6 clinicalleaders1.3 policymakers andadministrators

Thematic analysisof 12 interviewsand 18 focusgroups to formdevelopment ofan explanatorymodel.

Main themesidentified fromstakeholdersinclude: access andsecurity (withconcern overBYOD use outsideof hospital);content andfunctionalityencouragingsimplistic intuitivedisplays; the needto minimise theexclusion of thosewith less healthliteracy andengagement; usingboth patients anddoctors in thedesign andtraining to use theportal.Patients believedthe portal wouldfacilitate face-to-face communica-tion rather than re-place it. The portalmust be easy touse and ‘familiar’;this was consid-ered particularlyimportant for theacutely-unwellpatient.

The study waslimited toacademic centresand as such,results may notbe valid across allacute caresettings.

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Table 2 Summary of literature included. A summary of the data extracted from the included studies, themed around nature ofstudy and research question answered. (Continued)

Author and Titleof paper

Setting Nature of Study(includingwhetherparticipants arereporting onexperiential orhypotheticalviews)

Sample Size Nature of Analysis Summary of results Limitations

Research question 2: What are the ethical issues associated with patients having access to their medical records?

The challenges inmaking electronichealth recordsaccessible topatients. (Beardet al., 2012) [31]

– Examiningconcerns arisingin relation topatient access tohealth records.(Hypothetical)

– Analysis 1.Cost and securityconcerns: limitedfinancial resourcesneed to be sharedacross healthcareorganisations andclear regulationsregarding accessmust becommunicated.2.Assignment ofresponsibilities andrights: there areconflicts regardingthe timing ofinformation(release of labresults); use ofmedicalterminology andcontrol of therecord.3.Liability issues:theuse of messagingportals maypresent a liabilityrisk.4. Tensionsbetween patientsand doctors: ismessagingappropriate; arephysiciansproficient withelectroniccommunication.

EthicalConsiderationsabout EHR-Mediated ResultsDisclosure andPathology Infor-mation Presentedvia Patient Portals.(Davis and Smith,2016) [32]

– Examining ethicalissues regardingpatient access topathology andother results(Hypothetical)

– Analysis The main focuswas on time delaysfor differentpathology reportsto be accessible topatients.Some results (likeHbA1C) are usefulfor patients tomonitor theprogress and forpeace of mind,improving self-reliance but pa-tients may feel toblame for pooroutcomes due tolack of vigilance.Having access toother results couldhave negativeeffects:

D’Costa et al. BMC Medical Ethics (2020) 21:18 Page 12 of 19

Table 2 Summary of literature included. A summary of the data extracted from the included studies, themed around nature ofstudy and research question answered. (Continued)

Author and Titleof paper

Setting Nature of Study(includingwhetherparticipants arereporting onexperiential orhypotheticalviews)

Sample Size Nature of Analysis Summary of results Limitations

Access toabnormal,‘surprising’ resultscould lead topatients having tocome to termswith a diagnosiswithout emotionalsupport or theimmediateopportunity to askquestions; the (lackof) importance ofout-of-range re-sults could be mis-understood; gen-etic testing resultsand diagnosesmight be seenwithout sufficientcounselling.

Legal, Practical,and EthicalConsiderations forMaking OnlinePatient PortalsAccessible for All.(Lyles et al., 2017)[33]

America Examination ofthe legal, practicaland ethical issuesregarding patientportals inAmerica.(Hypothetical)

– Analysis Interest in portalsis constantthroughoutpopulations butportals themselvesare mostly small-font, English only,text-based contentand therefore dis-advantage disabledusers and non-English speakers.There are nospecific regulationsregarding theaccessibilitystandards of EHRs,but portal designsmust take the CivilRights act and theDigital AccessibilityGuidance intoaccount.

Why a shared carerecord is an officialmedical record.(Gu et al., 2013)[34]

NewZealand

An argumentsupporting thevalidity of ashared carerecord as anofficial record andthe consequencesof this.(Hypothetical)

– Analysis A shared recordneeds to meetethical andmedico-legal cri-teria, including reg-ulations forinteroperability,clinical responsibil-ity and restrictionson patient andprofessional access.Issues include bal-ancing empower-ment withlegislative

D’Costa et al. BMC Medical Ethics (2020) 21:18 Page 13 of 19

Table 2 Summary of literature included. A summary of the data extracted from the included studies, themed around nature ofstudy and research question answered. (Continued)

Author and Titleof paper

Setting Nature of Study(includingwhetherparticipants arereporting onexperiential orhypotheticalviews)

Sample Size Nature of Analysis Summary of results Limitations

requirements andhow we can fosterconfidence inhealthcare profes-sionals to co-partner the record.

Ethical questionsmust beconsidered forelectronic healthrecords. (Spriggset al., 2012) [35]

Australia Identifyingconcerns overelectronic healthrecords(Hypothetical)

– Analysis This studyidentified specificquestions arisingfrom the movetowards personallycontrolledelectronic healthrecords inAustralia, includingwho benefits andwho should payfor the system,what uses of thesystem arelegitimate, how weshould govern themanagement anduse of the systemand how weshould implementprivacy.Three mainquestions wereidentified for ouranalysis:1.Can records beconsideredtrustworthy ifpatients can lock/change record?2.Will patients whodo not (or can not,for health literacyreasons) use thesystem bedisadvantaged?3. Who else canaccess theinformation?Consumersgenerally morewilling to shareinformation forresearch andpublic health usesbut not forpharmaceuticaluse.

Medical records:practicalities andprinciples ofpatient possession.(Gilhooly and

UK Examining thepractical andethicaladvantages anddisadvantages of

– Analysis Practical benefitsinclude storageand transfer ofnotes – this wouldbe less

D’Costa et al. BMC Medical Ethics (2020) 21:18 Page 14 of 19

doctors were concerned access to notes will overwhelmor unnecessarily worry patients, [17, 24] patients werereassured by the shared information [37]. Grossmanet al suggested that ‘it may be prudent to omit or explainpotentially alarming information that carries a low

degree of certainty such as a cancer on a differentialdiagnosis list” [28].A reoccurring conflict was the release of lab (and

other) results in real time – patients strongly supportedthis whereas doctors preferred a delay, [24, 29, 31] in

Table 2 Summary of literature included. A summary of the data extracted from the included studies, themed around nature ofstudy and research question answered. (Continued)

Author and Titleof paper

Setting Nature of Study(includingwhetherparticipants arereporting onexperiential orhypotheticalviews)

Sample Size Nature of Analysis Summary of results Limitations

McGhee, 1991)[36]

patientpossession ofmedical records.(Hypothetical)

problematic if thepatient possessedthem and thepatient can check/screen notesregularly.Practical problemsinclude the risk ofpatients losingrecords (althoughresearch showsotherwise), theextra time doctorsmay take toexplain therecord’s contents(although thebenefit of thepatientunderstandingmay outweigh thecost of time lost).Ethical benefitsinclude reducingthe powerimbalancebetween thedoctor and patient,leading to morecommunicationand trust aspatients cancontrolconfidentiality ofrecords.Ethical problemsinclude that thedoctors may feelthey need tocensor record soas to not offendpatients. There isan argument thatthe notes aredoctors’ propertyand that patientsmight feel anxiousdue to the medicaluncertaintyportrayed throughthe notes.

D’Costa et al. BMC Medical Ethics (2020) 21:18 Page 15 of 19

part so they could interpret them appropriately, offersupport and create a future healthcare plan. Withoutthis, some participants theorised that results could beprone to misinterpretation and unnecessary anxietycould be provoked [32]. As a physician participant said:“one of the primary duties of a physician is not only toalert the patient to abnormal results but also to educatethem on their condition and appraise them of the followup that will be needed” [32]. If delayed release did exist,however, there was a question about who would take re-sponsibility for this [31].. Interestingly, this was notmentioned in the papers reporting direct experience.There was also debate about whether patients should

be co-creators of notes: Doctors, again hypothesising,were concerned that patients editing their own recordmight make them less reliable [34, 35].

Divergent views on doctor and patient rolesA range of alternative approaches have been developedto share non-verbal information, and they reveal a var-iety of implicit perspectives about the role of the patientand the doctor. Tools designed to ensure patient choiceand satisfaction are for those who perceive the patient asclient; one participant was quoted as saying: “I wouldlike to be able to see background information [ aboutmy doctor] like where they went to school” [25]. Provid-ing information in the hope that patients will becomemore actively involved in their care see the patient ascollaborator [22, 29]. The different perspectives influ-ence the purpose (and extent) of information sharing.

Cultural difference and societal risksDifferent healthcare systems worldwide vary in their ap-proach and concerns regarding access to notes – onestudy set in Israel found that the doctors more willing toshare notes with patients originated from English-speaking countries, suggesting a cultural influence to-wards this [19]. In some countries such as the USA andNorway, liability seems to be more of a concern for thedoctors and more of a motive for patients to accessnotes [21, 24].Across geographical boundaries, however, there was a

recognition that there would be variation in patients’willingness and ability to access notes, and that thismight lead to disparity in health care, [22, 35] with thosefrom lower socioeconomic groups less likely to engagedespite an often greater need; ‘{to] what extent shouldless engaged individuals be punished for their ‘ignorance’[35]. As Lyles et al stated: “there is an ethical imperativeto work to reduce the potential for the emergence or amp-lification of health disparities with respect to portal use’[33]. Large screens, simple formats and buttons will helpaccessibility for some [26, 38]; empirical research

assessing the impact on access to health care or impacton different socioeconomic groups was not identified.Finally, the questions of privacy and security of patient

notes were raised, although papers focussing solely onthis issue were excluded from the study. Some patientswere concerned about the security of having informationon their own devices, [26] while others did not voiceprivacy concerns [25]. Patients need to be able to trusttheir details are stored and shared securely, so they cancontribute to them in a transparent manner [35].

DiscussionThe review reveals a consensus that our current ap-proach to giving information to patients – almost exclu-sively verbally – is insufficient; that patient access tonotes is a welcome next step for patient-centred care,but that simply allowing full access, without explanationor summary, is also insufficient. Several ethical implica-tions need to be considered: increased information couldimprove patient trust and knowledge but might transferan (unwelcome) sense of responsibility to patients; doc-tors and patients have conflicting views on how muchinformation should be shared and when; sharing writteninformation might increase the already significant dis-parity in access to health care, and have unforeseen op-portunity costs.It is also clear that we need to consider the impact that

sharing notes in real time will have on medical practice.

Trust and the medical recordAlthough trust, both in doctors individually and gener-ally, is often measured, it is rarely sufficiently specifiedin the medical literature. Trust is necessary when thereis a degree of uncertainty and vulnerability (Becker1996), both of which are present in the patient-doctorrelationship; uncertainty about diagnosis and treatment,vulnerability not only because the patient is physicallyunwell, but because of the anxiety which often accom-panies illness, and which can affect judgment. Trust isoften described as a ‘three place relation’: ‘A’ trusts ‘B’with ‘C’ [39].In healthcare, the factors which can determine trust

can relate to the patient (‘A’) and the doctor (‘B’), as wellas what is entrusted (‘C’), namely the patient’s care [40].Since the degree of care required is related to the sever-ity and circumstances of the illness, these are also factorswhich can affect the patient’s vulnerability and need totrust. While trust is necessary for a functioning patient-doctor relationship, too much trust could be detrimental[41]. It may lead to reduced patient involvement indecision-making, or fewer questions being asked, leadingto the possibility of sub-standard patient care.What we want to achieve is well-placed patient trust, a

concept O’Neil refers to as trust of the trustworthy, [42]

D’Costa et al. BMC Medical Ethics (2020) 21:18 Page 16 of 19

where a patient can be confident that their trust in theirclinician is justified and thus can reasonably entrust de-cisions and actions about their care to him or her. Thisplaces an obligation on clinicians to be trustworthy, butit also requires patients to be able to ask questions tosatisfy themselves that their trust is well-placed. Provid-ing access to medical records enables patients to deter-mine what they are entrusting (more about what iswrong with them, and more about what treatments andinvestigations are planned) and enables them to placetheir trust well (or withhold it). Patients reading theirown records might in turn alter physicians’ behavioursto be more trustworthy: they may, as they have donewith clinic letters, modulate their language and ensurebetter verbal communication to avoid misconstructionof what is written.

Increased knowledge, increased responsibility?While trust is important, the relationship between trustand autonomy has been well explored [43]. In medicalethics analysis of the last 40 years, autonomy has beengiven primacy [44, 45]; part of respecting patient auton-omy is ensuring that they have sufficient information toparticipate in shared decision-making [46]. There ap-pears to be a recognition that the current approach – ofonly relaying verbal information to patients until theirdischarge – is inadequate. Patients forget, [47] relativesare concerned, questions are not asked [48].It is thus unsurprising that imparting more (or more

accessible) information to patients was welcomed byboth patients and doctors. However, concerns wereexpressed that giving more information to patients alsotransferred responsibility to them: responsibility to checkfor errors; to deal with uncertainty; to worry about re-sults. This responsibility may not always be desired bythe patient. As Alfred Taubert says: “In the so-called co-operative mode, guidance dominates to the point wheremost patients, realistically and appropriately, want thedoctor to take responsibility for their health.” By givingpatients increased information, we may be removingtheir choice to defer responsibility – and associated‘emotional work’ [49] or worry - to their physician.

Too much information, too soon?A specific example of emotional work or worry relatedto receiving test results in real time: whilst patientsexpressed a strong desire for this, doctors’ concerns aretwo-fold. Firstly, they were concerned that patients lackthe medical expertise to gauge the clinical importance ofresults. Secondly, they were worried that they (the doc-tor) would not be present to offer support and interpret-ation if the patient receives distressing news. Receivingemotional support from their doctor was a primary rea-son found for why patients audio-record consultations

[50]; getting results without the doctor present woulddeprive them of that immediate support. Outside theacute setting, Milliat-Guittard showed that 21% of breastcancer patients did not want to hold records; they didnot want to come across a comment that they were notexpecting. Instead, they wished to come to terms withthe disease in their own way [51].

Unintended worsening of inequalitySome interventions unintentionally increase inequalitiesby disproportionately benefiting less disadvantagedgroups [52]. Giving patients access to records might beone such intervention: clinical teams acknowledged thatthey were working in a stretched system - an interven-tion which could divert resources to those who couldread and understand their medical notes (or who hadthe confidence to ask questions) might lead to dispar-ities. Awareness of this, and establishing and testingways to mitigate this risk would be an important elem-ent to consider when introducing shared medicalrecords.

Impact on medical practiceMedical records are not only a patient narrative – oftheir presentation, their investigations and their progress- but a working medical document which reflects dy-namic thinking, [53] consultations, and acts as a tool forhandover and for training [54]. If doctors do not reflectconcerns clearly in the notes for fear of worrying the pa-tient, handover could be compromised, impacting nega-tively on the patient’s care and training of futuredoctors.

Strengths and limitationsThis review synthesised a wide range of papers frommedical, nursing and ethical literatures, and was rigor-ously conducted. However, it identified only papers writ-ten in western cultures, and in English, and theconclusions made here should not be extrapolated toother environments. In addition, 7/10 of the studies werecarried out in the USA, where the patient doctor rela-tionship also includes a transactional component – doc-tors need to ensure that patients know what they arepaying for. In other health systems represented in thesestudies (Canada, Norway, Israel) this is not the case, andso the motivations and repercussions of informationsharing may be different.

Conclusions and future directionsThese studies - and the timing of their publication - re-veal that there is significant growth in the approach ofsharing more medical information with patients, and sig-nificant variation in the type and quantity of informationwhich is being shared. Empirical work with integrated

D’Costa et al. BMC Medical Ethics (2020) 21:18 Page 17 of 19

ethical analysis is needed examining the impact of shar-ing medical records on patient-doctor and multi-disciplinary team communication, on patient trust, onphysician training and on resources. The overarchingquestion is what changes will occur to the role of doctorand patient as a result of routinely sharing more infor-mation, and, normatively, if there is a “right” amount ofinformation to share with patients in the hospitalsetting.Sharing information is a critical part of clinical prac-

tice; changing how it is done could have significant em-pirical and ethical impacts. This review has highlightedwhat those potential impacts might be. We recommendthat careful evaluation of what is recorded and what careis given – both at individual and societal levels – needto be conducted when changes are made to how infor-mation is shared.

Supplementary informationSupplementary information accompanies this paper at https://doi.org/10.1186/s12910-020-0459-6.

Additional file 1. Full search strategies for both literature searches.

AbbreviationsCINAHL: Cumulative index of nursing and allied health literature;EBSCO: Elton B Stephens Company (A database search database);MeSH: Medical subject headings; UK: United Kingdom; USA: United States ofAmerica

AcknowledgmentsWe would like to thank Anne-Marie Slowther for helpful conversations whichguided us during this research.

Authors’ contributionsThe Authors have contributed in the following way: ZF conceived of thestudy, and designed the research questions. SND and IK constructed theliterature search; IK refined it and preformed deduplications. SND and ZFscreened all papers and identified those for inclusion. ZF and SND drafteddifferent parts of the manuscript. All three authors reviewed, edited andapproved the final manuscript.

FundingZoe Fritz is funded by the Wellcome trust Grant reference numbers: 208213/Z/17/Z, and WT100577MA. The funding body had no role in the design ofthe study, collection, analysis, interpretation of data, or of the writing themanuscript.

Availability of data and materialsThere are no further data to present other than that which is presented here.

Ethics approval and consent to participateNot Applicable.

Consent for publicationNot Applicable.

Competing interestsThe authors declare that they have no competing interests.

Author details1Gonville and Caius College, Cambridge University, Trinity Street, CambridgeCB2 1TA, UK. 2THIS Institute (The Healthcare Improvement Studies Institute),Cambridge University, Clifford Allbutt Building, Cambridge CB2 0AH, UK.

Received: 28 March 2019 Accepted: 17 February 2020

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