resourceful patients navigating medical records in Australia, Canada

SalmiL, etal. BMJ Open 2020;10:e037016. doi:10.1136/bmjopen-2020-037016

Open access

Six countries, six individuals:

resourceful patients navigating medical

records in Australia, Canada, Chile,

Japan, Sweden and the USA

Liz Salmi ,

Selina Brudnicki,

Maho Isono,

Sara Riggare,

Cecilia Rodriquez,

Louise K Schaper,

Jan Walker ,

1,7

Tom Delbanco

1,7

To cite: SalmiL, BrudnickiS,

IsonoM, etal. Six countries, six

individuals: resourceful patients

navigating medical records in

Australia, Canada, Chile, Japan,

Sweden and the USA. BMJ Open

2020;10:e037016. doi:10.1136/

bmjopen-2020-037016

► Prepublication history for

this paper is available online.

To view these les, please visit

the journal online (http:// dx. doi.

org/ 10. 1136/ bmjopen- 2020-

037016).

JW and TD are joint senior

authors.

Received 15 January 2020

Revised 29 June 2020

Accepted 15 August 2020

For numbered afliations see

end of article.

Correspondence to

Liz Salmi;

lsalmi@ bidmc. harvard. edu

Communication

employer(s)) 2020. Re- use

permitted under CC BY- NC. No

commercial re- use. See rights

and permissions. Published by

BMJ.

ABSTRACT

In the absence of international standards, widely differing

attitudes and laws, medical and social cultures strongly

inuence whether and how patients may access their

medical records in various settings of care. Reviewing

records, including the notes clinicians write, can help

shape how people participate in their own care. Aided at

times by new technologies, individual patients and care

partners are repurposing existing tools and designing

innovative, often ‘low- tech’ ways to collect, sort and

interpret their own health information. To illustrate diverse

approaches that individuals may take, six individuals from

six nations offer anecdotes demonstrating how they are

learning to collect, assess and benet from their personal

health information.

INTRODUCTION

As increasing numbers of nations spend

billions on health information technology,

what patients might want in this new and

rapidly evolving context is often lost or

unheard. Many individuals feel stuck, whether

in a paper- based system or a health portal to

nowhere.

1 2

Rhetoric about ‘patient- centred

care’ abounds, but only rarely does it extend

to accessible medical records in primary,

specialty and even hospital care.

In the spring, 2017, healthcare teams

from 11 countries convened at a Salzburg

Global Seminar in Austria to examine how

patients might engage more actively in their

care with the help of transparent electronic

medical records that are evolving globally.

More than 60 participants gathered, repre-

senting diverse points of view—clinicians,

researchers, policy- makers, social scientists

and patients. The participants discussed the

untapped potential of electronic medical

records and how secure systems might help

patients and clinicians share personal health

information. In the absence of international

standards, the degree to which individual

patients participate in their care is largely

moulded by widely differing attitudes, laws

and interpretations of laws,

4 5

and medical

and social cultures. However, patients are

increasingly convening across cultures, and

patient advocates are learning to push the

professions to open doors that until recently

have been firmly shut.

In this article, six Seminar participants with

different healthcare needs provide a personal

snapshot of what it is like to be a patient and

read records in their respective countries.

Each reported on salient characteristics of

the country’s health records systems (table 1)

and considered five questions (Sidebar) as

they wrote about their experience living—

and thriving—in evolving digital climates.

Sidebar: each patient/care partner

author was prompted to think about these 5

questions.

Questions

► As a patient, what information can you

(and can you not) access in your medical

record?

► How has access/lack of access impacted

your medical decision- making?

► How are patients in your country ‘hacking’

(modifying) traditional/approved

methods of access to medical information

in search of improved health outcomes?

► How are patients in your country rede-

fining their roles, including the words

‘patient’ and ‘health outcomes’?

► How might medicine profit from listening

carefully to patients and their evolving

roles?

PERSPECTIVES

Sweden: knowledge is power

Sara Riggare

In the mid- 1980s, I discovered in my early

teens that something was not right with my

body. At times, my muscles became rigid and

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Open access

tense, making me slow and clumsy, especially during

repetitive movements such as brushing my teeth. I learnt

I have a form of Parkinson’s disease, and for more than 30

years now, I have been living with this condition.

My overall strategy? Care for myself. Without medi-

cations, my body does not function, but my doctor has

no way of knowing if and how I take medications he

prescribes. Until recently, my neurologist did not provide

online access to my healthcare records, but I collected

them all on paper and placed them in a binder. I review

open access scientific publications online, looking for

new research results that might benefit me. I combine

what I learn with data and observations I collect myself,

all of which enables me to understand and better manage

my condition.

Some years back I came across a new study docu-

menting effects of a drug under evaluation for freezing

of gait, one of my symptoms. I emailed the article to my

neurologist. We agreed that it was worth exploring, and

I got a prescription. Soon we both concluded that it did

indeed improve my gait.

Working with a doctor this way is not unique to me. In

a recent survey, 68% of Swedish respondents with Parkin-

son’s disease saw their neurologist for an hour or less

annually.

As patients, we take prime responsibility for managing

our own health. Meanwhile, our neurologists can attend

to people who need more help.

Chile: my arthritis, in bits and pieces

Cecilia Rodriguez

I have rheumatoid arthritis, and when I go to the hospital

for a day to get my intravenous medication, they print a

copy of the visit and give it to me. Often it is handwritten

and hard to read. Beyond that, I can get some exam

results from the clinic website, but only with a special

code for a one- time download. I cannot compare results

of my exams in one place, so I print them or save them on

my computer in case I need to look at them again. I want

to make my own decisions, so this has meant getting lots

of paper together. But often I cannot find the right one. I

know I put it somewhere!

This year, my mom gave me a notebook for my birthday.

It had the medical information she had saved from the

first 14 years of my life! It might sound crazy or unneces-

sary, but it is important for me. I was once admitted for

pericarditis (a swelling of the membrane surrounding the

heart). Afterwards, I could not remember my actual diag-

nosis; I kept forgetting things I wanted to tell my doctor

and he kept telling me things that were so important. I

laugh about this present from my mom, but it makes me

feel safe to have my medical story together again.

Japan: can technology help patients become more active

agents in their care?

Maho Isono, PhD

I think medicine in Japan is profiting from listening

carefully to patients. As anthropologist Arthur Kleinman

Table 1 Electronic health record systems in Australia, Canada, Chile, Japan, Sweden, and the USA

Country Description

Australia In early 2019, the Australian government assigned citizens a secure, online health record. My Health Record

aspires to house summary information uploaded from encounters with the health system nationwide.

Canada In Canada, 85% of family practice physicians, and 79% of specialist physicians report using an electronic

medical record.

However, only 22% of Canadians can access portions of their medical records

electronically. No patients have access to their entire records.

Chile Chile has a two- tier health system, with public and private health insurance.

Roughly, 73% of community

hospitals, 68% of primary care networks and 50% of emergency care units use electronic health records.

However, use of health information technology (IT) by patients is limited to making online appointments or

accessing public health resources. If at all, citizens can access only very limited personal health information.

Japan In Japan, health systems, hospitals and small practices work with various electronic health record systems.

Citizens have the legal right to request medical records, but most are unaware of this opportunity. The

majority of citizens do not have digital access to their health records, although apps are available that display

lists of prescriptions available at pharmacies.

Sweden Swedish citizens have the right to receive copies of their medical records. The Swedish government

established a national health information infrastructure connecting a national patient portal with all different

electronic health record systems used in the country. The patient portal gives everyone access to their

electronic health record, which is accessible using an ID based on a national personal identication number.

Individual counties decide what information patients can access from their electronic health record systems.

As of May 2020, 68.3% of citizens had logged into the patient portal account, and 36.8% had accessed their

record through the portal at least once.

The USA About 80% of doctors, and nearly all hospitals in the USA use electronic health records.

In 2017, a little over

half of patients reported offers of online access to their records, either by their providers or by their insurers.

Among them, a little more than half registered on their health systems’ secure portals and viewed their

records at least once.

Health providers control what patients can and cannot access through these portals.

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Open access

pointed out, the community is the biggest space in which

patients deal with illness.

Today, this space is changing

and growing rapidly because of the expansion of online

platforms where patients can take in and mingle knowl-

edge from scientific medicine and traditional medicine.

Then they establish their own understanding and manage-

ment for their illness. Patients move beyond being objects

of biomedicine to become active agents who choose how

and when to move around within the various sectors of

health and illness.

Numerous communities organised by patients with

various diseases exist in Japan. One remarkable approach

to achieve patient- centred medicine is tojisha- kenkyu.

Kenkyu means study, investigation and research. Tojisha

refers to interested persons, disabled persons themselves

or patients themselves. In tojisha- kenkyu, tojisha share

their everyday problems with one another, then analyse

and discuss how to deal with them. This is noteworthy

since, rather than getting advice from medical profes-

sionals, tojisha find solutions or a way of managing prob-

lems from the perspectives of tojisha themselves. Founded

initially in 2001 by the social welfare facility Bethel House

in Hokkaido, it has become a prominent activity of

people with mental disorders. Different from self- support

groups, individuals conducting tojisha- kenkyu share

their findings with the public. This has been particularly

significant for people with mental disorders, since in our

country their experiences have often been suppressed

and hidden.

Tojisha- kenkyu has been further developed.

For instance, tojisha and researchers from fields such as

cognitive science and robotics are working together to

explore the scientific validity of the hypotheses generated

by tojisha- kenkyu.

In light of the purpose of this paper,

tojisha- kenkyu made it possible for tojisha to create, accu-

mulate and update their own record of everyday prob-

lems which is not restructured by medical gaze.

Some patients are trying and reporting that new tech-

nologies are helping. However, patients occasionally

report that technology is increasing anxiety, rather than

helping. In my medical anthropological research, I inter-

viewed an individual whose atrial fibrillation (irregular

heartbeat) comes and goes. He bought a micro ECG

machine to keep track of his pulse. He tried to find

a pattern in his irregular pulse, but over time could’nt

make one out. He did not enjoy watching his irregular

pulses every day, and eventually he stopped wearing the

device. Our engaged patients are still discovering how to

strike the right balance in patient empowerment.

Canada: from access to control of our own health data

Selina Brudnicki

I saw first- hand the hardships my late mother experienced

obtaining copies of her records. She had to navigate her

health and share information with her care team. She

underwent breast cancer treatment at several facilities

and learnt to interpret her results with the help of her

doctors. I kept her ‘big binder’ of results. It includes

pathology and diagnostic imaging reports, and even

a few oncologists’ notes. Therein lies also my mother’s

own handwritten note: ‘[The doctor’s] report does not

seem correct. I always mention ‘pain,’ not discomfort. I

kept complaining about a new pain’. One year too late, a

second opinion and review of her medical notes revealed

that she and her doctor were not on the same page. There

was evidence that her cancer had already spread to her

lungs and liver. She died soon thereafter.

I am a senior manager at University Health Network,

Toronto, and my colleagues and I work closely with

patients to understand their needs and priorities so

they can better manage their health. Co- designed with

patients, care partners and staff, we co- created a secure

website that enables patients to see their appointment

schedules, test results, pathology and diagnostic imaging

reports, and clinical notes at the same time they become

available to their care team. There are links to patient

education resources, and patients may share their health

record with others. After a year, 94% of patients reported

improved patient experience. They felt better prepared

for appointments, for decisions they needed to make and

reported improved communication and management of

their care.

Today, patients want visibility and transparency into all

their health data, but they face a large cultural divide:

health information custodians and care providers in

our country currently control what, when and whether

patients can access their own data. In response, we collab-

orated with patients, their care partners, government

and industry subject matter experts to advance a new

paradigm in which patients have the ability to authorise,

revoke and monitor secondary use of their data. That

way they can both take control over their health data and

consent to sharing their data with trusted sources.

Australia: dad is old and ill. What may his future hold?

Louise K Schaper, PhD

Today, dad sent me a picture of prescription medications

that would fill two shoe boxes. He has been ‘shopping

up’ big, in preparation for a 2- month vacation. I suspect

it will be his last. Ever the stoic head of household, dad

tells us he is fine, and while we know that’s untrue, we do

not know if he is a bad liar or in denial. Every time he is

prescribed a new drug or there is a new symptom, mum

phones to fill me in. My parents do not have the internet,

and since I am the one with a health degree, I get asked to

interpret medical symptoms and pill prescriptions.

Given dad’s deteriorating health, I was desperate to see

what his doctors actually think, and dad granted me proxy

access to his My Health Record (MyHR). Now I can help

interpret information and often put his and my family’s

mind at ease. But he does not tell his medical team about

how regularly his blood pressure goes to levels that could

kill most people. He ‘wouldn’t want to bother them’.

I learnt from dad’s record that he is on 12 different

prescription medications, and there is also an audit trail

of every medical appointment he has had. But it is limited

to the date and name of the clinician only. Basically, the

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Open access

information in MyHR is limited to what is in a government

database of prescriptions and appointments, information

we already have. Dad’s clinicians are not uploading any

of his clinical notes, and neither are the pathologists. He

could actually request more information, but I can hear

dad’s voice in my head: ‘No. The doctor is too busy and I

don’t want to make a fuss’.

So meanwhile, my family and I are none the wiser. Our

hopes remain unrealied: to uncover information that

could help dad change his behaviours or reveal errors (if

he would dare point them out to his doctors). For now,

I am left with a question that gnaws at me: ‘If they’re

denied access to their own health information, how can

patients have agency over their own health?”.

The USA: even the activist struggles

Liz Salmi

I was diagnosed with an astrocytoma (a slow- growing

brain cancer) 1 week after my 29th birthday, and since

then I have lived in a world of uncertainty: 20 more years,

or 20 more months?

My way of coping with uncertainty? Understand as

much as I can about my condition and plan for treatment.

For this, I have found the patient portal a trusted side-

kick. After surgeries, seizures, appointments and tests,

the patient portal is where I turn to be reminded of the

growing narrative, that is, my medical history.

One day, after a few months of chemotherapy, I

recognised a pattern in the laboratory results available on

my patient portal. It showed me when I was at risk for

thrombocytopenia and would need to delay treatment.

Thereafter, instead of waiting for permission to start

my next round of oral chemotherapy, I would email my

doctor:

Dear Dr. S,

My lab work appears to be the same as last month.

Please authorize a refill for temozolomide. Per the

plan we discussed during our last visit, I will pick up

the prescription on my way home from work tomor-

row and begin my next round of chemo on Monday.

She agreed with this process, and my ability to turn

information into knowledge (with guidance from my

doctor) returned a sense of autonomy to me at a time

when I felt I had almost no control over any other aspect

of my health.

Positive reinforcement from my doctors has moulded

me into the proactive patient I am today. However, even

with widespread availability of patient portals, patient

activists like me continue to struggle to gain access to the

most important part of our medical records: the doctor’s

note. In the USA, we have had the right by law for more

than 20 years to request and receive copies of our full

medical records—including our doctors’ notes. But these

requests take time and effort, and costs can be involved.

I once requested a copy of my record and finally got it on

a DVD. Had I asked for a paper copy, I would have had

to pay $725.40 out of my own pocket. All that just to own

what is inherently mine! Today, almost 15% of Americans

have gained access to clinical notes through a portal, but

the actual ‘read rates’ of notes remain low, virtually across

the board.

12 13

It is not easy to change long- standing

culture and habits!

CONCLUSION

As these anecdotes demonstrate vividly, the global impact

of electronic medical records varies widely and will

no doubt continue to do so for a very long time. The

emerging technologies that will further define and refine

medical records need to reflect different cultures, indi-

vidual sensibilities, socioeconomic factors and myriad

other phenomena. But the perspectives we display have

a common denominator: persistent resourcefulness as

individuals work to bridge gaps in their personal health

information.

Some describe patient engagement as the ‘block-

buster drug’ of the 21st century, but how many will want

to engage in ways described by those featured in this

paper?

Are large numbers of people, perhaps even most

people, capable of becoming so resourceful? We suggest

the answer may be ‘yes’. We suspect the potential is there,

with the caveat that patients become truly engaged only

when they have a more complete picture of their own

health.

Transparent medical information is spreading. While

in some cultures different views prevail, most nations

agree today that patients have a right to access their

own health information. Offering patients ready access

to their own medical records makes sense, because

patients (and their care partners) need abundant infor-

mation in order to engage optimally in their care, while

regaining and retaining autonomy in their lives.

Author afliations

Department of General Medicine, Beth Israel Deaconess Medical Center, Boston,

Massachusetts, USA

University Health Network, Toronto, Ontario, Canada

International University of Health and Welfare, Ōtawara, Japan

Health Informatics Centre, Karolinska Institutet, Stockholm, Sweden

Fundacion Me Muevo, Santiago, Chile

Health Informatics Society of Australia, Victoria, South Australia, Australia

Harvard Medical School, Boston, Massachusetts, USA

Twitter Liz Salmi @TheLizArmy and Selina Brudnicki @sbrudnicki

Acknowledgements The authors wish to thank the alumni and staff of Salzburg

Global Session 553, 'Toward a Shared Culture of Health: Enriching and Charting the

Patient- Clinician Relationship', for their leadership on this topic.

Contributors All authors contributed substantially to the manuscript. TD, LS and

JW conceived the idea and design, and drafted and critically revised the text. LS,

SB, MI, SR, CR and LKS developed country- specic content.

Funding This work was supported by the Salzburg Global Seminar, the John F.

Keane & Family Foundation, and the Wang Foundation.

Competing interests None declared.

Patient consent for publication Not required.

Provenance and peer review Not commissioned; externally peer reviewed.

Open access This is an open access article distributed in accordance with the

Creative Commons Attribution Non Commercial (CC BY- NC 4.0) license, which

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Open access

permits others to distribute, remix, adapt, build upon this work non- commercially,

and license their derivative works on different terms, provided the original work is

properly cited, appropriate credit is given, any changes made indicated, and the use

is non- commercial. See:http:// creativecommons. org/ licenses/ by- nc/ 4. 0/.

ORCID iDs

LizSalmi http:// orcid. org/ 0000- 0003- 3798- 7438

JanWalker http:// orcid. org/ 0000- 0001- 9366- 1200

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