The attitude, benefits, and concerns of patients and
clinicians towards releasing the progress notes in
the patient portal
S.L. Janssen
2
Department of Medical Informatics
Master Thesis
The attitude, benefits, and concerns of the patient
and clinician towards releasing the progress notes in
the patient portal
S.L. Janssen
Mentor Supervisor M.G. Ros N.Venema-Taat Amsterdam UMC Tutor S.K. Medlock3
Student
Sharon Lisa Janssen Meibergdreef 692 1105 AX Amsterdam Student number: 10809244 Email: s.l.janssen@amsterdamumc.nl Mentor M.G. Ros
Director of outpatient clinic Amsterdam UMC Email: m.g.ros@amsterdamumc.nl Daily supervisor N. Venema-Taat EvA Servicecentrum Amsterdam UMC Email: n.venema@amsterdam.umc.nl Tutor S.K. Medlock
Department of Medical Informatics Amsterdam UMC, location AMC
Email: s.k.medlock@amsterdam.umc.nl
Location of the Scientific Research Project
EvA Servicecentrum Amsterdam UMC Meibergdreef 5 1105 AZ Amsterdam The Netherlands
Period of Scientific Research Project
4
Content
Preface 6
Summary 7
Samenvatting 8
Chapter 1: General introduction 10
Chapter 2 – Systematic review 12
Abstract 12
Introduction 13
Method 13
Results 14
Before implementation of sharing notes 17
After implementation of sharing the notes 17
Before and after implementation of sharing the notes 18
Discussion 19
Further research 21
Conclusion 21
Chapter 3 – Survey for clinicians and patients 22
Abstract 22
Introduction 23
Method 23
Survey development & testing 23
Setting 23
Participant selection 24
Data collection 24
Data analysis 24
Results 25
Sharing the notes? 26
Content of the notes 27
Medical jargon 27
Personal work notes and "shadow file" 27
Anticipated benefits 28
Concerns 29
Discussion 29
Conclusion 32
Chapter 4: Interviews with clinicians and patients 33
5 Introduction 34 Method 34 Study design 34 Analysis 35 Results 35 Coding tree 36
Sharing the note 36
Content of the note 36
Medical jargon 37
Personal work notes and "shadow files" 37
Anticipated benefits 38
Concerns 38
Other 39
Discussion 40
Conclusion 42
Chapter 5: overall discussion 43
References 46
Appendix 1 – Results literature review 50
Appendix 2– Survey patient 59
Appendix 3– Survey clinicians 65
Appendix 4 – Code tree patients 71
6
Preface
I did my master thesis at EvA Servicecentrum at the Amsterdam UMC. EvA Servicecentrum is the organisation who implemented, upgrade and manage the electronic health record (Epic) and the patient portal of the Amsterdam UMC. The EvA Servicecentrum would like to use the results of this master thesis to decide if they should consider implementing sharing notes, if yes, how it should be implemented and where should they focus on considering the concerns and drawbacks of patient and clinician.
I would like to thank my tutor S.K. Medlock for all the help during the past 8 months. She was the best tutor I could wish for since she was always willing to help and providing useful feedback. She guided me through the research rules and guidelines during my thesis. I would like to thank M.G. Ros as my mentor and N. Venema-Taat as my daily supervisor for the provided feedback and their help. Of course, I would like to thank the Ehealth team of the EvA Servicecentrum for their pep talks and help. I would also like to thank my family for their support, always believing in me and the discussion about open notes during the past 8 months. I especially would like to thank my dad M. Janssen who helped with distributing the clinicians’ survey in the Spaarne Gasthuis and my mom H. Janssen van Loon who made the cover photo of my thesis. Last but not least I would like to thank my boyfriend and friends for supporting and helping me during these 8 months.
7
Summary
Open Notes is a movement where clinicians share their progress notes with patients through the patient portal. A progress note is made during or after each outpatient visit, and clinicians use medical jargon in these notes. The aim of this research was to investigate the attitude, benefits, concerns, drawbacks, and lessons learned from patients and clinicians towards sharing the progress notes with patients through the patient portal. To answer the research question we used three different research techniques.
We performed a literature review, a survey (both patient and clinician) and interviews (both patient and clinician). In the literature review we made a separation between articles before, during or after the implementation of sharing the notes with patients. The patient survey was handed out on paper in the Amsterdam UMC, location AMC and the clinician survey was distributed through the mail to clinicians from Amsterdam UMC (location AMC and VUmc) and Spaarne Gasthuis. We did interviews with patients and clinicians of the Amsterdam UMC, location AMC.
One of the important findings of these studies are that the patients and clinicians want different things. Most patients want to read the notes through the patient portal, but most clinicians do not like to share their notes with the patient. There is a big gap between the wishes and perspectives of the patient and clinician named in the literature, the surveys and the interviews; patients believe that they would feel more in control, better understand their health and remember their treatment plan better, but the clinicians are afraid that the patient would worry or will be confused. If we look at the literature results most of the results are similar to the results we found in the survey and the interviews. The literature does not show the attitude as detailed as we did in the survey and interviews. The literature also stated that the patient would be more medication adherence but both patients in the survey and interviews did not agree with that. There is also a big gap between the patients and clinicians in expectations about the medical jargon, since the patient would like to have the note more understandable with layman’s language but the clinicians would like to continue using jargon. As described in all the chapters clinicians are most concerned about sensitive data, differential diagnosis and things they did not discuss with the patient yet. Patients stated in the survey and interview that they are most interested in the laboratory results, summary and diagnosis. Other ways of achieving these benefits should be investigated like the visit summary, more information on paper, a simple card where the doctor write the diagnosis (with medical name), treatment / medication, links to external sources and maybe some other suggestions.
We conclude that there is a big gap between the wishes and expectations of the patient and the clinicians since most patients would like to see the notes and most clinicians would prefer not to share the notes with patients. However, the gap may not be as large as it seems. The results of our survey suggest that the information patients are most interested in is not the information that is most concerning to clinicians. Future research should investigate whether there is a set of information that clinicians would be willing to share that would satisfy patients' wishes. We suggest that research should be done about the content of the note, what parts clinicians define as sensitive data and investigate if clinicians would like to share other parts of the electronic health record with patients instead of the note to provide the information that is most wanted by patients. We also observed a distinct lack of objective research and therefore we suggest that future work includes objective outcomes in addition to subjective outcomes, so that the true impact of Open Notes can be known. The results of this work will help us understand the expectations and concerns according to patients and clinicians, and lead to a solution that prevents the problems foreseen by clinicians, but still realizes the benefits of open notes in empowering patients.
8
Samenvatting
“Open Notes” is een beweging in de gezondheidszorg waarbij artsen hun voortgangsnotities delen met de patiënt in het patiënten portaal. Voortgangsnotities worden gemaakt tijdens of na elk consult en een arts schrijft deze notitie in medische taal dus met medische jargon. Het doel van dit onderzoek is onderzoeken wat de houding van patiënten en artsen is tegenover het delen van de voortgangsnotitie in het patiënt portaal. Een ander doel is het bepalen van de voor- en nadelen en wat de aanbevelingen zijn van patiënt en arts ten aanzien van het delen van de notitie.
Om de onderzoeksvraag te beantwoorden zijn er drie verschillende technieken gebruikt. Er is een literatuur studie gedaan, een vragenlijst (zowel patiënt en zorgverlener) verstuurd / uitgedeeld en we hebben interviews afgenomen. Tijdens de literatuur studie hebben we de artikelen onderverdeeld in 3 groepen namelijk voor / tijdens / na implementatie van het vrijgeven van de notities. De patiënten vragenlijst was op papier uitgedeeld in het Amsterdam UMC (locatie AMC) en de artsenvragenlijst was verstuurd via de mail naar artsen in het Amsterdam UMC (locatie AMC en VUmc) en het Spaarne Gasthuis. De interviews vonden plaats met patiënten van het Amsterdam Umc (locatie AMC).
Een van de belangrijkste bevindingen van deze studies is dat de patiënt en de arts lijn recht tegenover elkaar staan. De meeste patiënten willen de notities lezen terwijl de meeste artsen de notities niet willen delen met de patiënt. Er is ook een groot verschil in de wensen en perspectieve van de patiënten en artsen. Uit de literatuur, de vragenlijsten en de interviews is gebleken dat patiënten geloven dat ze zich meer in controle voelen over hun zorgproces, beter hun gezondheid begrijpen en hun behandelplan beter kunnen onthouden terwijl artsen bang zijn dat de patiënt zich meer zorgen gaan maken en verward raken. De gevonden resultaten in de literatuur komen overeen met de resultaten die we hebben gevonden in de vragenlijsten en interviews. De literatuur beschrijft de houding van patiënten en artsen niet zo gedetailleerd als de vragenlijst en de interviews. De literatuur beschrijft dat de patiënt zijn medicatie beter zou innemen als de patiënt toegang heeft tot de voortgangsnotities. Uit onze vragenlijsten en interviews bleek dat de patiënten het hier niet mee eens zijn. Er is ook een groot verschil in de verwachten van patiënten en artsen ten aanzien van het vak jargon en afkortingen. De patiënten willen namelijk dat de notities in meer begrijpelijke taal/lekentaal geschreven wordt maar de artsen willen gewoon hun medische vakjargon kunnen gebruiken. Uit de literatuur, vragenlijsten en interviews is gebleken dat artsen zich het meeste zorgen maakt om gevoelige informatie, de differentiaal diagnose en informatie die ze nog niet hebben besproken met de patiënt. Patiënten beschrijven in de
vragenlijst en de interviews dat ze het meest geïnteresseerd zijn in de laboratorium resultaten, samenvattingen en de diagnose. Andere manieren of deze voordelen te bereiken zullen onderzocht moeten worden zoals de bezoeksamenvatting, meer informatie op papier, een simpele kaart waar de arts een diagnose op schrijf (met medische naam), medicatie en behandeling, link naar externe bronnen en mogelijk andere suggesties.
Uit de resultaten kunnen we concluderen dat er een groot verschil is tussen de wensen en de verwachtingen van de patiënt en de arts. Het overgrote deel van de patiënten zou graag de notities online in het patiëntenportaal willen zien maar het merendeel van alle artsen wil liever niet de notitie delen met de patiënt via het patiëntenportaal. Al hoewel het verschil is misschien minder groot dan we denken. De
resultaten van de vragenlijst suggereren dat de informatie die patiënt als meest interessant beoordelen niet de informatie is waar de arts zich het meeste zorgen over maakt. Vervolgonderzoek moet onderzoeken of er een bepaalde set van informatie is die de arts wel wilt delen en er moet onderzocht worden of er andere delen van het elektronische patiënten dossier gedeeld kunnen worden met de patiënt in plaats van de notitie. We raden aan onderzoek te doen naar de inhoud van de voortgangsnotitie, of er een verschil is per patiëntgroep, ziektes en specialisme, of patiënten de inhoud van de voortgangsnotitie begrijpen, of notities de beste manier is om extra informatie te verstrekken aan de patiënt of zijn er ook andere manieren, wat verstaan artsen onder gevoelige informatie en of artsen wel bereid zijn andere delen van het elektronisch patiënten dossier te delen in plaats van de notitie. De resultaten van deze onderzoeken helpen ons begrijpen wat de verwachtingen en
9 zorgen zijn van patiënten en artsen. De resultaten kunnen ook leiden tot een oplossing die zorgt dat de
genoemde problemen niet voorkomen maar wel de voordelen behaald worden.
10
Chapter 1: General introduction
A few years ago, all patient records were on paper. These days, nearly all medical information is stored in electronic health records. This has been accompanied by wider use of patient portals. A patient portal is an online portal where the patient has access to a part of their medical record which contributes to the patient engagement [1,2]. Patient engagement is a topic of increasing interest in recent years. Previous research showed that patient engagement can contributes to better health care outcomes [3]. Some patient portals allow patients to view the progress notes written by their doctor. Every doctor makes progress notes or visit notes during a consult to record diagnosis, delivered care, and treatment plan but also communicate findings, opinions, and plans with colleagues. Progress notes are part of the (electronic) medical health record and are written in various formats. The government of the United States of America introduced in 2015 stage 3 of the Meaningful Use Program, which requires clinicians to share patient information such as progress notes otherwise they will get less paid for Medicaid patients (patients whose health care is paid for by the government) [4]. Due to the Meaningful Use incentives the "shared notes" or "OpenNotes" movement has taken place [5–7]. 'The OpenNotes team of the Harvard Medical School and the Beth Israel Deaconess Medical Center define open notes as follows: “OpenNotes is the international movement that’s making health care more transparent. It urges doctors, nurses, therapists, and others to invite patients to read the notes they write to describe a visit” [7]. However, although shared notes are becoming more common in the US, the effect of shared notes on clinicians and patients has not been systematically investigated. Thus, it is not known what the benefits and
drawbacks are, and if the benefits outweigh the risks. Furthermore, cultural differences might change the effects of open notes. Recently, the Radboudumc conducted a pilot of releasing the progress notes to clinicians and patients; however, the results are not yet published [8]. It is logical to expect that the clinicians would have some concerns about open notes, such as fears that the patient would worry more if they read the progress notes because they do not understand the medical jargon, but we also expect some benefits such as more shared decision making. The Amsterdam UMC, one of the major University Medical Centers of The Netherlands, offers a patient portal to its patients. However, the progress notes that are entered in the electronic health record are not yet available in the portal. Currently, 41% of the patients of the outpatient clinic have an active portal account. The portal has multiple functionalities such as viewing, adding, removing medication and health problems (if clinician approves), viewing most laboratory results, viewing letters to the general practitioner, filling in questionnaires, and a secure message function to communicate with care providers. There could be many reasons why only 41% of the patients have an active portal account, such as the patients are not that interested in seeing their record, the usage of the portal is too complex, or patients might have not be aware that the portal exists. These same problems would also make open notes less effective. On the other hand, interest in shared notes might spur increased use of the portal. Although much work has been done in the field, the attitudes, benefits, concerns, drawbacks, and lessons learned of the clinicians and patients have not been systematically studied to our knowledge, and these could be different in the Dutch setting. Therefore, the aim of this is to identify the
attitudes, benefits, concerns, drawbacks, and lessons learned from the patient and the clinician towards releasing the open notes in the patient portal.
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Research questions
- What are the benefits of sharing outpatient progress notes to the patients for the patient and clinician?
o What are the benefits as reported in the literature? o What benefits are anticipated before implementation? o Do the anticipated benefits match the realized benefits?
- What are the concerns and drawbacks of releasing outpatient progress notes to the patient for the patient and clinician?
o What are the drawbacks as reported in the literature?
o What fears and concerns are present prior to implementation?
o Do the drawbacks seen post-implementation match the concerns before implementation?
- What is the attitude of clinicians towards sharing the notes with patients through the patient portal?
- What is the attitude of the patient towards accessing their notes through the patient portal? o Will the patient be able to understand the outpatient progress notes?
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Chapter 2 – Systematic review
Abstract
IntroductionThe aim of this literature review was to investigate the benefits, concerns, drawbacks, and lessons learned from patients and clinicians towards sharing notes in the patient portal in previous work (before and after implementation).
Method
We searched in the databases of Embase and MEDLINE. The search query was checked with a validation set of articles which we expected to be included in the query. The inclusion criteria were; published in English, about outpatient progress notes and is about benefits, concerns, drawbacks lessons learned, and attitudes of patients and health care professionals. We also recorded the author, sample, setting, study population (patient & clinician), study design and the objective of the included studies.
Results
The search generated 3353 articles after deduplication. A total of 16 articles were included. The anticipated benefits and perceived benefits for the patient were similar to each other namely, they understood their health better, felt more control of their health and care, be more prepared for their visits, took better care of themselves, did remember the plan of care better and medication
adherence increased. Some concerns and drawbacks were also reported. Cromer et al. and Woods et al. described that the tone of the notes contributed to some patients feeling disrespected or
expressed discomfort about the language in the notes. Some studies described that patients
mentioned that the notes were not equivalent to the information that was discussed during the visit. Patients also stated that they do not understand the notes and that medical jargon is frustrating and needs improvement. Clinicians stated that they document fewer details and will be less candid because they think that the notes will be offended for the patients and that they are concerned how patients would respond to sensitive information in the notes.
Conclusion
The most commonly anticipated benefits were also mentioned as perceived benefits post-implementation. However, perceived benefits like medication adherence were not measured objectively, thus we cannot say if these benefits were realized. Concerns included that the patient would worry more or would not understand the note, but these were not measured
post-implementation, therefore no firm conclusions can be drawn about the drawbacks. Further research should include objective measures of benefits and drawbacks. These objective measures would help in assessing the actual effects of sharing notes.
13
Introduction
As stated in Chapter 1, we would expect clinicians and patients to have some concerns, but also expectations about the benefits of shared notes. To our knowledge, multiple studies have been done on the Open Notes movement [9,10], but thus far the literature has not been systematically studied. A literature review provides an overview of all the research that has been done about open notes. Therefore, we would like to summarize and aggregate the current knowledge on benefits, concerns, drawbacks, and lessons learned, but also to determine if the anticipated benefits are realized and if the concerns materialize into real drawbacks. Thus, we sought literature from both before and after implementation studies. The anticipated benefits are the reported benefits before implementations and the realized benefits are the reported benefits after implementation. The aim of this literature review was to investigate the benefits, concerns, drawbacks, and lessons learned from patients and clinicians towards sharing notes in the patient portal in previous work, looking at studies both before and after the implementation of open notes.
Method
Data sources and search
We searched in the databases of Embase and MEDLINE. The query is given in Box 1. We searched for articles with the terms (shown in Box 1) in the title, abstract and keywords. The search query was checked with a validation set of articles which we expected to be included in the query. The last search was performed on January, 30, 2019.
Box 1 | The search query performed in Ovid
((((open or transparent* or shar* or releas*) adj5 (note or notes or record or records)) or OpenNote or OpenNotes) and patient*).ti,ab,kw,kf.
OR
((patient* adj5 (read or reads or reading or access*)) and
((read or reads or reading or access*) adj5 (record or records or note or notes))).ti,ab,kw,kf.
Study selection
The inclusion criteria were:
1. The study is about shared outpatient progress notes
2. A main aim of the study is to gather benefits, concerns, lessons learned, drawbacks and attitudes about shared notes from patients or health care professionals
3. The study is published in English 4. The full text was available
Title and abstract screening and full-text screening of the articles was performed by a Master's student in Medical Informatics (SLJ). The references of our included articles were searched to find other articles of interest (Bibliographic search). We divided the articles in 3 groups; before/during implementation, after implementation or both.
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Data extraction
We recorded the author, sample, setting, study population (patient & clinician), study design and the objective of the included studies. We also recorded if the article is about notes or medical record, before or after implementation, anticipated and realized benefits, concerns, drawbacks and lessons learned. The data was collected with a structured data extraction form.
Results
The results of the search are illustrated in Figure 1. The search generated 3353 articles after deduplication of which 219 were included for full-text review based on title and abstract. After reading the full-text 16 articles were included.
Figure 1 | Search flow diagram
The characteristics of the included studies are summarized in Table 1. As shown in Table 1 the study population of 10 out of the 16 articles contains patients receiving mental health or clinicians
providing mental health. Nine studies used surveys as their study design and six studies used interviews.
15 Table 1 | Summary of the included articles
Study Sample Setting Study population
(patient)
Study population (clinician) Study design Objective
Ross et al. [11] 2003
N = 107 but only N= 78 completed the second survey
USA Patients with heart
failures
Medical staff Survey and
structured interviews
A 12-month randomized controlled trial of a patient-accessible medical record to further assess the effects of such a program.
Earnest et al. [12], 2004 N = 107 patients (N = 54 in the intervention group and N = 53 in the control group)
USA Patients with
congestive heart failure
Physicians in general and clinic staff (two nurses and two receptionists)
Surveys, semi-structured
interviews and focus groups
To evaluate the experiences of patient and physician in a clinical trial of an online electronic medical record.
Woods et al. [13], 2013 N = 30 (patients) & N = 6 (family members) USA, between November 2009 and January 2011 Veterans receiving mental health service x Focus groups interviews
To determine if veterans who accessed their health data and notes felt that such access had an impact on their care or their
relationships with their providers, and if they believed that access was associated with any unintended consequences.
Nazi et al. [14], 2015
N = 6861 USA, from June 2013 till September 2013
Veterans receiving mental health treatment
x Survey To explore the experience of early patient adopters who accessed
their clinical notes online using the Blue Button feature of the My HealtheVet portal
Dobscha et al.
[15], 2016
N = 208 USA x Psychiatrists, psychologist,
social worker, nurse practitioner and nurse -> mental health clinicians
Survey To describe VA mental health clinicians’ experiences with and attitudes toward OpenNotes use. Secondary objective is to examine relationship among clinicians’ characteristics and clinician attitudes toward OpenNotes.
Cromer et al.
[16], 2017
N = 28 USA, between July
and December 2014 Veterans receiving mental health service x Semi-structured interviews
Patient perspectives of how access to Veterans Affairs (VA) clinical notes may affect relationships with their mental health clinicians.
Denneson et al.
[17], 2017
N = 28 USA, between May
and October 2014
x Psychiatrists, psychologist,
social worker, nurse practitioner and nurse -> mental health clinicians
Semi-structured interviews
To examine mental health clinicians’ perspectives on and experience with OpenNotes, to better understand how mental health clinicians approach care and documentation.
Kayastha et al.
[18], 2017
N = 20 USA Adult patients with
metastatic or incurable cancer receiving active cancer treatment x Semi-structured interview
To describe the experiences of patients with advanced cancer who read their own cancer care notes.
16 Lee et al. [19],
2017
N = 451 USA, from August
2014 to September 2014
Patients receiving eye care
x Survey To understand patients’ perceptions about potential benefits and
harms of accessing their own ophthalmology clinic notes via an electronic patient portal as part of the OpenNotes initiative.
Peck et al. [20], 2017
N = 15 (clinicians) & N = 52 (patients)
USA Psychiatric patients 12 psychiatrists, two licensed social workers and one nurse practitioners.
Survey In order to begin to understand the impact of OpenNotes on psychiatric patients and clinicians, we conducted an exploratory pilot study of implementing OpenNotes.
Wolff et al. [21], 2017 N = 323 patients and 389 care partners (baseline) N = 184 patients and 252 care partners (12-month follow up)
USA, from July 2013 to the 18th of July 2014 and from the 19th of July 2014 to July 2015.
Adult patients and care partners
x Survey To examine patients’ and care partners’ perceptions of OpenNotes,
confidence in managing aspects of patient care, and online practices after 12 months of exposure to the intervention.
Denneson et al.
[22], 2018
N = 178 USA Veterans receiving
mental health treatment
x Survey Describe responses to OpenNotes, clinical notes available online,
among patients receiving mental health care and explores whether responses vary by patient demographic or clinical characteristics
Petersson et al.
[23], 2018
N = 871 Sweden x Nurses (26,7%), assistant
nurse (21,3%), doctor (15,6%), psychologists (10,7%) and other
Survey To describe, compare, and discuss how different HCPs in adult psychiatric care in Region Skåne expect Open Notes to impact their patients and their own practice
Petersson et al.
[24], 2018
N = 699 Sweden x Nurses (27,9%), assistant
nurse (24,0%), doctor (14,2%), psychologists (9,2%) and other
Survey To describe and discuss how health care professionals in adult psychiatric care in Region Skåne experienced the influence of Open Notes on their patients and their own practice, and compare the results with those of the baseline study.
Pisciotta et al.
[25], 2018
N = 28 (clinicians) and N = 28 (patients)
USA, from May 2014 and October 2014 (clinicians) and from July 2014 and December 2014 (patients) Veterans receiving mental health treatment Psychiatrists, psychologist, social worker, nurse practitioner and nurse -> mental health clinicians
Semi-structured interview
To provide mental health clinicians recommendations identified by patients and clinicians that help them effectively practice in the context of OpenNotes Mishra et al. [26], 2019 N = 1487 agreed participating but N = 872 provided data
USA, from February 2016 to May 2016
Patients in general x Survey To analyses patients’ perceptions about the patient portal
experience with access to primary care and specialist’s notes (OpenNotes)
17 As shown in Appendix 1 we sought to learn if the article is about sharing notes or sharing a medical record in general, before or after implementation of sharing the notes, the anticipated or realized benefits, drawbacks and lessons learned. Of the included articles three studies were before the implementation of shared notes, 12 studies were after implementation of shared notes, and one study examines both before and after implementation. One group also performed a study both before and after implementation, but published them separately (Petersson et al [23,24]). We did not find any articles which describe a situation during the implementation of sharing notes.
Before implementation of sharing notes
Of the three studies who investigated the situation before implementation two studies [15,23] investigated the clinician side and the remaining article [19] investigated the patient side. Lee et al. [19] described multiple anticipated benefits for the patient such as OpenNotes would help them more to take their medication (77%), take better care of themselves (84%), better prepared for visits (89%), feel more in control (90%), better remember their care plan (94%) and better understand their conditions (95%). One study [15] showed that 85% of the clinicians think that notes available to the patient are a good idea and that 63% of the patients will have a better understanding of their health in medical conditions. Another study [23] described that only 27% of the clinicians believe that OpenNotes will increase trust for them as professionals and 48% of the clinicians believe that the patient will better remember the treatment plan. A shown in Appendix 1 Dobscha et al. and Petersson et al. [15,23] both named that the patient will worry more after reading the notes (77% and 58%) and more than the half of the clinicians mentioned that the notes will be more confusing than helpful (67% and 53%). These studies also mentioned that the clinicians think that the patient will contact them with questions about their notes (41% and 69%) and that the patient will be offended and therefore the clinicians stated that they will write less detailed if the notes are shared with the patient (69% and 45%). Lee et al. [19] described that only 14% of the patients stated that they would worry more.
After implementation of sharing the notes
Of the included studies 12 took place after implementation of shared notes. However, none of the studies objectively measured the realized benefits and drawbacks; all of them relied on surveys to gather opinions about the effects of sharing notes, hereafter referred to as perceived benefits. Only Ross et al [11] objectively measured the number of messages sent from the patient to the doctor, but the rest of the study results were perceived benefits and drawbacks. Several studies [16–18,22] described that Open Notes would benefit the therapeutic relationship by enhancing the feeling of trust and more transparency. Cromer et al. [16] mentioned that patients describe transparency when the notes reflected what happened during the visit. Reasons for viewing the notes were curiosity, wanted to know more about their health, wanted to know what their clinicians think, understood what their clinicians said, it is their right, verify the accuracy [14,20,21]. Realized benefits for the patient were: they understood their health better [14,18,20,21,26], felt more control of their health and care [14,18,20–22], be more prepared for their visits [13,14], took better care of themselves [14,26], did remember the plan of care better [14,20,21] and medication adherence increased [11,14,21].
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Concerns and drawbacks according to patients
Multiple studies addressed concerns and drawbacks of sharing notes with patients. Cromer et al [16] and Woods et al. [13] described that the tone of the notes contributed to some patients feeling disrespected or expressed discomfort about the language in the notes. In one study [20] patients addressed the concerns that their health information will be stolen or that the patient portal will be hacked. Some studies [13,16,26] described that patients mentioned that the notes were not
equivalent to the information that was discussed during the visit. Patients also stated that they do not understand the notes [14] and that medical jargon is frustrating and needs improvement [18]. Kayastha et al. [18] also reported that patients knew that medical jargon was meant for clinicians to communicate with each other. Patients suggested the insertion of hyperlinks for definitions or unfamiliar words and they also suggested to add a summary section written in layman’s terms [18]. A few patients experienced stress and worry of reading the notes [22] and a few patients stated it was emotionally difficult to read and regretted afterwards [18].
Concerns and drawbacks according to clinicians
Clinicians stated that they document fewer details and will be less candid [17,20,24] because they think that the notes will be offended for the patients [12,20,24]. Earnest et al [12] mentioned that clinicians are concerned about how patients would respond to sensitive information in the notes. Clinicians reported that patients will worry more and would not understand the notes [24]. A few clinicians [17] thinks that sharing the notes with patients will damage the therapeutic relationship and that the patients would dictate what they should write in the notes or not. Ross et al. [11] stated that sharing the notes resulted in 31% increase in messages.
Lessons learned / recommendations
Multiple recommendations were given in the studies. Additional education and guidance for clinicians on how to adjust their practices to protect patients and themselves [17,26] and give also information of the Open Notes to the patient [Peterson 2 et al]. Petersson et al. [24] stated also that the clinician should decide when a note should be released to the patient. Some studies [12,18,25] recommended making the notes more understandable for the patient. Earnest et al. [12] and Kayastha et al. [18] recommended reducing jargon and making the notes more comprehensible for non-medical persons. A system that allowed patients to look up definitions and abbreviations quickly is also named as a possibility [12] because certain words, abbreviations or medical jargon can
contribute to feeling judged or labelled [25].
Before and after implementation of sharing the notes
Petersson et al. [23,24] did a baseline survey and a post-implementation survey with the same group of clinicians. The clinicians were less positive about the benefits then they were in the baseline survey. However, they were also less concerned in the post-implementation survey than in the baseline survey. Wolff et al. [21] described no major differences between the baseline results and the follow-up results.
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Discussion
Summary of the findings
We identified 16 studies looking at benefits, concerns, drawbacks or lessons learned in implementing shared notes. Of these studies, three took place before implementation, 12 after implementation and one both before and after. However, none of the studies objectively measured the benefits and drawbacks; all of them relied on surveys to gather opinions about the effects of sharing notes. Only Ross et al [11] objectively measured the number of messages but the rest of the study results were perceived benefits and drawbacks. Reasons for viewing the notes given by patients were curiosity, wanted to know more about their health, wanted to know what their clinicians think, understood what their clinicians said, it is their right and to verify the accuracy [14,20,21]. The anticipated benefits and perceived benefits for the patient were similar to each other; namely, they understood their health better [14,18–21,26], felt more control of their health and care [14,18–22], be more prepared for their visits [13,14,19], took better care of themselves [14,19,26], remembered the plan of care better [14,19–21] and medication adherence increased [11,14,19,21]. Some concerns and drawbacks were also reported. Cromer et al [16] and Woods et al. [13] described that the tone of the notes contributed to some patients feeling disrespected or expressed discomfort about the language in the notes. Some studies [13,16,26] described that patients mentioned that the notes were not equivalent to the information that was discussed during the visit. Patients also stated that they do not understand the notes [14] and that medical jargon is frustrating and needs improvement [18]. A few patients experienced stress and worry of reading the notes [22] and a few patients stated it was emotionally difficult to read and regretted it afterwards [18]. Clinicians stated that they document fewer details and will be less candid [17,20,24] because they think that the notes will be offensive for the patients [12,20,24] and that they are concerned how patients would respond to sensitive
information in the notes [12]. Clinicians reported that patients will worry more and would not understand the notes [24].
Strength & limitations
In this literature review we used broad inclusion criteria since we included studies with patients with different types of diseases and studies with patient and clinician perceptive. Another strength is that we used a systematic search strategy and search in multiple databases for this literature review. Another strength of this study is that we make a separation between studies before implementation and studies after the implementation of shared notes.
However, this study does have some limitations. One limitation is that it is possible that some relevant studies which fit the inclusion criteria were missed in the search process because the articles could be located in other databases. This problem could be partly solved in future research by adding more databases. Only one researcher evaluated the articles for inclusion so it is possible that errors were made in the article inclusion and data extraction. Since only one researcher conducted the literature review, it is also possible that the work could be biased by the views of the researcher, for example the researcher's conceptualization of Open Notes.
Comparison to other studies
To our knowledge, this is the first systematic review on the topic of shared notes or sharing part of the patient record. We chose to limit the scope of this study to notes in outpatient clinics, since the benefits and concerns may differ in different settings. However, much work has been done in other settings, such as primary care. Bell et al. [27] described that before the Open Notes were introduced
20 to the primary care physicians, 44% of the physicians thought that the patients would disagree with what they write. This finding is consistent with the mindset of clinicians who also think that patients will be offended by what they write in their notes [13,16]. Bell et al. [27], Esch et al. [28] and Gerard et al. [29] also stated that the primary care physicians mentioned after an experience with sharing the notes that their patients trust them more as their doctor. This finding was also reported in these studies [16–18,22]. The findings of Nazi et al. [14] and Kayastha et al. [18] are consistent with the findings of another study [30] which confirms that also patients in the primary care setting found parts of their notes difficult to understand, and often relied on providers to explain the notes.
Interpretations, implications & impact
As shown in Table 1, 10 of the included studies are about patients with a mental disease or clinicians who provide mental health care. A possible explanation for this might be that researchers think that patients with a mental health problem are not comparable with other patient groups or that they might have other outcomes with reading the notes. Only one article [18] described the perspective of patients with cancer. There is a notable gap in knowledge about this specific patient group since these notes probably will include diagnosis and information which probably will have a big impact on patients. None of the included studies objectively measured the effects of shared notes to determine if the anticipated benefits or drawbacks were realized. Benefits such as medication adherence could be measured objectively, as could drawbacks such as documenting fewer details in the notes. These objective measures would help in assessing the actual effects of sharing notes. Consequently, no firm conclusions can be drawn about the anticipated vs perceived drawbacks of sharing notes. As shown in Table 1, most of the included studies are from the USA where they have the Meaningful Use Program, which requires clinicians to share patient information (such as progress notes)[5]. This financial incentive could change clinicians’ perspectives of shared notes.
These findings may help us understand the perspective of patients and clinicians, but it is possible that in 10 - 15 years the perspective of both groups may be shifted. Providing access (a paper copy or digital) to a part or parts of the medical record was new a few years ago but this is becoming increasingly common in hospitals and primary care centres in the Netherlands. We assume that sharing progress notes with patients is relatively new and therefore less is known about the consequences of sharing the notes with patients but it is possible that in 10-15 years sharing the notes in the patient portal will become a standard procedure. It might be possible that the patient will provide more information themselves in the medical record in the future.
As presented in this study, releasing the notes to patients still raised some concerns and addressed drawbacks by patient and clinician. This work may be of interest to clinicians, as it can help them to understand the patient perspective. This work may be also of interest to trainers of the electronic health record to guide the clinicians in changes in the workflow when notes will be shared with patients through the patient portal. For example, the clinician needs to start a conversation about the notes, explain what the patient could expect in the notes and most important discuss everything during the visit. Some named concerns and drawbacks could have a big impact on patients and clinicians and therefore the hospital needs to inform the patients and clinicians about the positive and negative effect of seeing and sharing the notes. This work may be of interest to patient federations, to inform patients about the benefits and drawbacks of open notes.
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Further research
During this study we researched the benefits, concerns, drawbacks and lessons learned of outpatient progress notes in general, but the benefits, and drawbacks may be different for different patient groups. As shown in Table 1 a lot of studies are done with mental health patients but we do not know if the named benefits and concerns apply to other patient groups such as children, patients with cancer, and chronic diseases. Therefore, further work is required to investigate if there is a difference between patient groups, diseases, and specialisms. Another possible subject for future research is exploring what the patients and clinicians mean when they talk about notes. This is interesting because it might be possible that patient and clinicians have different views on what information is stored in the progress notes, what content should be in the notes and if the benefits and concerns apply to all the content of the notes or just to parts of the note. In the course of this review, the author observed that the content of the notes was rarely described. Some studies [20,24] mentioned that they are concerned about how patients will respond to sensitive information. Future studies on the impact of sensitive information in notes are therefore recommended.
Conclusion
The objective of this literature review was to examine the benefits, concerns, drawbacks, and lessons learned of sharing the notes with patients. In most studies the patients are positive about sharing the notes except the medical jargon and abbreviations but in most studies the clinicians are less positive since they expect that the patient will not understand the note and therefore will worry more. To prevent that from happening clinicians stated that they will document fewer details and less candid. Further research is required to investigate what information is stored in the progress notes, what content should be in the notes and if the benefits and concerns apply to all the content of the notes or just to parts of the note. The most commonly anticipated benefits were also mentioned as perceived benefits post-implementation. However, perceived benefits like medication adherence were not measured objectively, thus we cannot say if these benefits were realized. Concerns included that the patient would worry more or would not understand the note, but these were not measured post-implementation, therefore no firm conclusions can be drawn about the drawbacks. Further research should include objective measures of benefits and drawbacks. These objective measures would help in assessing the actual effects of sharing notes.
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Chapter 3 – Survey for clinicians and patients
Abstract
IntroductionIn Chapter 2 we saw that most studies came from the United States of America. We suspected that cultural differences could cause Dutch patients and clinicians to respond differently than patients and clinicians from the United States. In Chapter 2 we also saw that most studies would look at opinions after implementation rather than asking about opinions before implementation. We also did this survey because we wanted to get the opinions of a fairly large sample. The objective of this study was to examine the attitude (patient and clinician), benefits and concerns of sharing the notes with through the patient portal.
Method
For the survey development relevant questions from previous studies were identified, and the rest of the questions were devised by the researchers based on the aims of our study (concerns, benefits, and attitude toward shared notes). The patient survey was piloted by experts in health
communication. The clinician survey was piloted by clinicians who were familiar with the hospital and our electronic patient record but were not currently not. The patient survey was distributed in the Amsterdam UMC, location AMC. The clinician survey was sent to clinicians from both locations of the Amsterdam UMC (AMC and VUmc) and Spaarne Gasthuis. Patients (adults) who attended the
outpatient clinic were invited in person to participate in the survey and the survey was given to them on paper. To preserve anonymity, we did not attempt to identify participants.
Results
Patients (n=98) are interested (83%) in reading their progress notes online in the patient portal. By contrast, most clinicians would prefer not to share notes with patients (82%). Reasons (n=350) why they would not like to share the notes or a part of the note with the patients are: it will confuse and make the patient anxious (67%), the patient will not understand the notes (63%), the information is not relevant for the patient (59%), the clinician did not discuss everything that is written in the note (57%) and some information is only relevant for colleagues (47%). Patients (n=90) agreed (30%) or strongly agreed (31%) with expecting to notes to be written in understandable language/layman’s languages if the clinicians know that they are reading the notes. Patients will remember better what had been discussed, feel more in control and understand their health better. Patients are the most interested in the laboratory results, a summary, and the diagnosis.
Conclusion
The results show that there is a big gap between the perspective of patients and clinicians. Further research should investigate if clinicians have resistance towards sharing the parts that are most interesting to patients - laboratory results, summary and the diagnosis - and if those parts also have the same named benefits of sharing the notes. Further research should also investigate if sharing notes is the best way to provide more information to a patient or are there any other ways to achieve that goal without such a big gap between patient and clinician.
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Introduction
In Chapter 2 we saw that most studies came from the United States of America. We suspected that cultural differences could cause Dutch patients and clinicians to respond differently than patients and clinicians from the United States. We also wanted to know which benefits and concerns were most common in our population. As shown in Chapter 2 we saw that most of the studies were about mental health patients. So, we would like to know which benefits and concerns are most common in in the outpatient clinic in general with a good mix of patients. In Chapter 2 we also saw that most studies would look at opinions after implementation rather than asking about opinions before implementation. Only four other studies looked at the before implementation [15,19,21,23] where two studies looked at the clinician side and two studies looked at the patient side. In this study, we investigate both the patients’ and the clinicians’ perceptions on the implementation of Open Notes. In the Amsterdam UMC departments and clinicians have a lot of autonomy and to successfully implement an impactful change in the clinicians’ workflow such as shared notes, it is essential to first assess the attitudes and inventory concerns. We, furthermore, conducted this survey to gather opinions of a fairly large sample, so a survey is an appropriate method. The objective of this study was to examine the attitude of both patients and clinicians, benefits, and concerns of sharing the notes through the patient portal. We compared the results of our literature review (Chapter 2) to the results of this survey.
Method
Survey development & testing
We choose for surveys because the survey would be deployed in two big hospitals with multiple locations. The surveys were developed using questions from previous studies [31–33] as a starting point. Relevant questions from these studies were identified, and the rest of the questions were devised by the researchers based on the aims of our study (concerns, benefits, and attitude toward shared notes). The survey was iteratively discussed and revised with the research team until all team members were satisfied with the questions.
After the researchers had an agreement on the survey, a pilot was done. The patient survey was piloted by experts in health communication. The clinician survey was piloted by clinicians who were familiar with the hospital and our electronic patient record but were currently not practicing in our hospital since all practicing clinicians would be eligible as subjects for the survey.
The feedback from the pilot testing was used to make the final survey for the patients (29 questions over 6 pages) and clinicians (23 questions over 4 pages). The online clinician survey was developed in the programming language PHP. The clinicians who filled in the online survey were able to review and change their answers through a “back button”. The patient had the ability to review and change their answers since the survey was on paper.
The study and the surveys were presented to the Medical Ethics Committee of Amsterdam UMC (location AMC), which determined that the study fell outside of the scope of the Dutch Human Subjects in Research law, and thus approval was not required.
Setting
The patient survey was distributed in the Amsterdam UMC, location AMC. The clinician survey was sent to clinicians from both locations of the Amsterdam UMC (AMC and VUmc) and Spaarne
24 Gasthuis. The Amsterdam UMC is an academic hospital and Spaarne Gasthuis is a non-academic hospital. These hospitals use the same electronic patient record system. This software also provides a patient portal. Laboratory information, diagnoses, and letters to the general practitioner can be viewed by the patient.
Participant selection
By filling in the survey the patients and the clinicians agreed that their answers were stored and processed anonymously. Both surveys were voluntary and no incentives were offered to patients or clinicians.
Clinicians
We presented this study at the meeting of the heads of the outpatient departments. The email to all the heads of Amsterdam UMC (locations AMC and VUmc) contained a short description of the study and the link to the survey, which was available for 5 weeks (25th of March 2019 till 1th of May 2019).
The chiefs of the Amsterdam UMC were asked to send this email to other clinicians of their
department. With the help of a contact person in the Spaarne Gasthuis, this email was also sent to all the clinicians in the Spaarne Gasthuis. It was an “open survey” so everyone who had the link to the online survey was able to fill it in.
Patients
Patients (adults) who attended the outpatient clinic were invited in person to participate in the survey and they received the survey on paper. Arrangements for the researcher to attend the
outpatient clinic were made with the team leaders, who are responsible for the other personnel such as the nurses, doctor’s assistants, and desk employees. The researcher went to the outpatient clinic department on a specific day and attend the morning meeting with the staff to introduces herself and the research. From the 27th of March 2019 till the 16th of April 2019 the researcher went to various outpatient departments to hand out the surveys to patients and she made sure that the departments had a variety in type of patients such as age, chronic disease and the seriousness of the diagnoses. The researcher (SLJ) approached the patient in the waiting rooms and introduced herself, the study and the duration of the survey (5-10 minutes). If the patient agreed to participate the researcher handed out the survey on paper and left the patient alone. When the patient was ready the researcher collected the survey. Data on patients who declined to participate was not collected.
Data collection
The clinicians’ survey was developed as a custom PHP application, and its technical functionality was tested by a researcher (SLJ) prior to deployment. The patients and clinicians were allowed to skip questions. The results of the online clinician’s survey were exported to a file. All the results of the paper survey were transcribed by hand by one researcher (SLJ). Surveys filled in during interviews were added to the survey results by hand (Chapter 4).
Data analysis
The analysis consisted of simple counts and percentages. To preserve anonymity, we did not attempt to identifiy participants. Patients and clinicians were allowed to skip questions and therefore we analysed each question with n equal to the number of responses to that question. The responses on
25 the open questions of the survey were compared with the responses of the interviews (Chapter 4) by one researcher (SLJ)
Results
A total of 350 clinicians filled in the survey or a part (n= 29) of the survey and there were also 15 responses with no questions answered so they were excluded. Some clinicians filled in the survey during the interview if they did not do that yet (n=8). A total of 99 patients filled in the survey. Demographic characteristics of patients and clinicians who filled in the survey are given in Table 2 and 3. As shown in Table 2 more than 50% of the patients has a high level of education and 58% of the patients their self-reported level of health as fine. In Table 3, we note that the number of male and female clinicians is nearly equal. We also see in Table 3 that the largest number of clinicians are from the Amsterdam UMC (locations AMC). The responses to open questions were very similar to the responses in the interviews, discussed in Chapter 4, and are therefore not reported in this chapter.
Table 2 | Demographic characteristics of the patient
Characteristics Numbera (N) Percentage (%)
Total 99 Gender (N = 94) Female 68 72% Male 26 28% Age (N = 94) <18 1 1% 18-28 17 18% 29-39 15 16% 40-49 10 11% 50-59 22 23% 60-69 20 21% 70-79 9 10% Education level (N = 83) Primary school 1 1%
VMBO / MAVO / LBO / VBO 12 14%
MBO (MTS, MEAO) 15 18% HAVO / VWO (HBS, MMS) 12 14% HBO / WO (HTS, HEAO) 43 52% Self-reported health (N = 88) Very poor 2 2% Poor 20 23% Fine 51 58% Very well 13 15% Excellent 2 2%
26 Table 3 | Demographic characteristics of the clinician
Characteristics Numbera (N) Percentage (%)
Total 350 Gender (N = 314) Female 174 55% Male 138 44% Other 2 1% Age (N = 314) 18-28 6 2% 29-39 117 37% 40-49 100 32% 50-59 72 23% 60-69 19 6% Location (N = 316)
Amsterdam UMC (location AMC) 141 45%
Amsterdam UMC (location VUmc) 114 36%
Spaarne Gasthuis 61 19%
Department (N=320)
Other 91 28%
Gynaecology, sexology, obstetrics,
gender 27 8% Haematology 25 8% Lung department 24 8% Not specified 24 8% Internal medicine 23 7% Cardiology 21 7% Chirurgic department 18 6% ENT department 11 3% Dermatology 10 3% Immunology 10 3% Ophthalmology 10 3% Oncology 6 2% Gastroenterology 6 2% Urology 5 2% Psychiatry 4 1% Nephrology 3 1% Endocrinology 1 0% Infection department 1 0% Type of patients (N=319, N=316) No life-threatening diseases 102 32% Life-threatening diseases 63 20% Mix of both 145 48%
Short term patients 91 29%
Long term patients with one appointment per year or less
10 3%
Long term patients with multiple appointments
214 68%
Sharing the notes?
A majority of patients (81/98, 83%) were interested in reading their progress notes online in the patient portal. Patients found it important (50/90, 56%) and very important (19/90, 21%) to read their notes. By contrast, most clinicians would prefer not to share notes with patients (282/345, 82%).
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Content of the notes
Patients were most interested in seeing their laboratory results (78/89, 88%), a summary of the visit (71/89, 80%) and diagnosis/differential diagnosis (60/89, 67%). Other parts were treatment plan (45/89, 51%), medication (41/89, 46%), and physical examination (34/89, 38%).
A majority of the clinicians write similar content in the notes such as the anamneses (343/350, 98%), policy (339/350, 97%), diagnosis (328/350, 94%), physical examination (325/350, 93%), discussion/summary (321/350, 92%), differential diagnosis (315/350, 90%), results of laboratory (314/350, 90%), additional examinations (315/350, 90%) and medical history (283/350, 81%). Most clinicians stated that they would not like to share the differential diagnosis (196/350, 56%), discussion/summary (162/350, 46%) and the anamneses (110/350, 31%) with patients. Reasons why the clinicians would not like to share the notes or a part of the note with the patients are: it will confuse and make the patient anxious (236/350, 67%), the patient will not understand the notes (221/350, 63%), the information is not relevant for the patient (205/350, 59%), the clinician did not discuss everything that is written in the note (201/350, 57%) and some information is only relevant for colleagues (113/350, 47%). Less than 45% of the 350 clinicians mentioned that they would expect more questions, expect more work or that the note is their personal note.
Medical jargon
Patients agreed (27/90, 30%) or strongly agreed (28/30, 31%) with expecting notes to be written in understandable language/layman’s language if the clinicians know that they are reading the notes. We asked the patient what they think if the notes containing jargon and abbreviations. The majority of the patients is not positive about the notes containing jargon and abbreviations (44/85, 52%). Main reasons that were given are that they would not understand the notes and therefore they would not have any benefits if the notes are shared. Of the patients (41/85, 48%) was okay with medical jargon and abbreviations in the notes. Those patients think that this is the most efficient way of working/writing for the clinicians and that they can find extra information or abbreviations on the internet if that is needed. If patients did not understand the notes they would ask the clinician at the next visit (39/90, 43%), discuss with family or friends (16/90, 18%), call the department (12/90, 13%) or send a message to the clinician (10/90, 11%). We also asked the patients what they would do if they see information in the note they did not expect. Patients would ask the clinician about it during the next visit (62/90, 69%), call with the department (38/90, 42%) or send a message to the clinician (22/90, 24%). Less than 10% of the patients stated that they would discuss it with family or friends.
The majority of clinicians is not willing to write notes with less jargon and abbreviations (193/321, 60%). A smaller group of clinicians was willing to change the writing style partly (85/321, 26%).
Personal work notes and "shadow file"
There is a Dutch Guideline [34] which explains that a personal work note is a note that is only for the eyes of the clinician who writes them. It is not for colleagues and it should not contain information that belongs in the medical record of a patient. A personal work note is meant for thoughts,
suspicions or questions. Every clinician in the Netherlands has the right to make a personal work note [34]. If the information is important for colleagues than it should be a part of the medical record of the patient. Both hospitals have an inactive functionality for the clinicians to make a personal note in the electronic health record (EHR) but we did not tell them in the survey. We asked if and where they
28 make their personal note. The clinicians stated that they don’t make them (151/330, 46%), do not have the possibility in Epic (87/330, 26%) and other (99/330, 30%). The most common named statement under “Other” was that they write the personal note in the progress note. The majority of the clinicians do not need a personal work note now but they do need it when the notes will be shared with patients (179/330, 54%). Some clinicians would like to have a personal note (71/330, 22%) and less than 20% of the clinicians do not need a note (63/330, 19%). More than half of the clinicians answered that they would transfer information to other notes where the patient did not have access to (yes (166/329, 50%) or partly (67/329, 20%)).
Anticipated benefits
As shown in Table 4 most patients agreed with the statements about the anticipated benefits. Most patients disagreed that their medication adherence will increase if they can read their notes in the patient portal.
Table 4 | Results the statements (possible benefits)
Statements Strongly disagree
Disagree Neutral Agree Strongly agree
Discuss the notes with my clinician of another
clinician (N=89)
2% 14% 28% 44% 12%
Discuss the notes with family and friends (N=90)
9% 18% 30% 35% 8%
Remember better what we discussed during the
visit (N=90)
3% 2% 16% 56% 23%
Feel more in control (N=90)
4% 6% 29% 44% 17%
Understand my health and complaints better
(N=90)
5% 2% 33% 47% 13%
Increase of medication adherence (N=89)
26% 26% 28% 16% 4%
We asked the clinicians if they think that there are benefits for the patients and themselves when the notes are shared with the patient through the patient portal. Clinicians think that the patient will remember and understand better what was said during a visit (144/322, 45%), the patient is better informed about their health (96/322, 30%) and sharing notes will contribute to shared decision making (98/322, 30%). Clinicians (92/322, 29%) mentioned under the category “Other” that they believed that there are no benefits at all for the patients and the clinicians. Some anticipated benefits were chosen by less than 25% of the clinicians such as to place the released laboratory results in context, the family is better informed, therapy compliance and a better patient-clinician relationship.
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Concerns
As shown in Table 5 most patients disagreed or were neutral with the statements that notes will be more confusing than useful and that they would worry more.
Table 5 | Results of the statements (possible concerns)
Statements Strongly disagree
Disagree Neutral Agree Strongly agree
The notes will be more confusing than useful
(N=90)
9% 40% 35% 9% 7%
Would worry more about my health (N=89)
10% 47% 33% 7% 3%
We also asked the clinicians (n=322) if they think that there are concerns for both the patient and themselves. Clinicians think that patients will be confused (276/322, 86%), will worry more (276/322, 86%), increase of questions through the message function in the patient portal (239/322, 74%), corrections / request for additions (215/322, 67%), loose a communication possibility with colleagues (203/322, 63%), more work and spend more time at documentation (200/322, 62%). Less than 40% of the clinicians think that the family will interfere and that they have to explain more during the visit.
Discussion
In this study, we aimed to assess attitudes, anticipated benefits, and concerns of clinicians in three Dutch hospitals and patients in one hospital regarding shared notes. We found notable disparity in the opinions of clinicians and patients: 83% of the patients wanted to read their notes, and 74% found it important to do so. However, 82% of the clinicians prefer not to share their notes. Most clinicians would not like to share the differential diagnosis (56%), discussion/summary (46%) and the anamneses (31%) with patients. Reasons for not sharing are: it will confuse and make the patient anxious (67%), the patient will not understand the notes (63%), the information is not relevant for the patient (59%), the clinician did not discuss everything that is written in the note (57%) and some information is only relevant for colleagues (47%). Most of the patients (strongly) agreed (61%) that they would expect the notes to be written in understandable language/layman’s languages if the clinicians know that they are reading the notes. The majority of clinicians is not willing to write with less jargon and abbreviations (60%). Only a smaller group of clinicians was willing to change the writing style partly (26%). Most patients agreed that they will discuss their note with their clinician or another clinician, discuss the note with family and friends, remember better what had been
discussed, feel more in control and understand their health and complaints better. Clinicians think that the patient will remember and understand better what was said during a visit (45%), the patient is better informed about their health (30%) and sharing notes will contribute to shared decision making (30%). However, 29% of the clinicians felt that there are no benefits at all. Clinician think that patients will be confused and will worry more (86%), increase of questions through the message function in the portal (74%), corrections / request for additions (67%), loose a communication possibility with colleagues (63%), more work and spend more time at documentation (62%).
Strengths and limitations
A strength of this study is the inclusion of a broad sample of patients and clinicians, since we included patients visiting various departments and clinicians from various departments. Therefore, we had a
