CHIM305, Module 6 - Topics

6/8/24, 3:04 AM CHIM305, Module 6 - Topics
Topics
Patient/consumer/family needs and perspectives
Role of informatics in meeting patient needs
Patient portals
Privacy, confidentiality, and security
Learning Objectives
By the end of this module, you will be able to:
Describe, discuss, and explain what consumers, patients, and their families want and need in
terms of information and access
Describe, discuss, and explain how technology can help or hinder
Describe, discuss, and explain the role of informatics in meeting patient needs
Examine examples of patient portals, their benefits, issues, and challenges in uptake and adoption
Evaluate issues around privacy, confidentiality, and security
Required Readings/Resources
Reading
Textbook: El Morr, C. (2018). Introduction to health informatics: A Canadian perspective

(1st ed.). Toronto: Canadian Scholars.
Chapter 11 – Privacy, Confidentiality, and Security
Cavoukian, A. (2011). Privacy by design principles. Retrieved from

https://www.torontomu.ca/pbdce/certification/seven-foundational-principles-of-privacy-by-design/
A Case Study – Regina Holliday

The approach in this lesson is slightly different from our other modules. The focus is on how information
and technology can be used (or not used) to meet the needs of the patients – based on how the patients
define their needs – not how the institution, facility, physician, or clinician defines their needs. Much of
this lesson is inspired by Regina Holliday, a patient advocate with her own fascinating story of
https://de.torontomu.ca/de_courses/templates/m/?c=CAE82D4350CC23ACA7FC9AE38DAB38AB&m=6&p=183906 1/10
breakdowns in communication and the importance of information in the healthcare system. This is an
excellent case study that causes us to pause, take stock, and look at the patient through a different lens.
The Story
Regina’s story is well told on her Regina Holliday’s Medical Advocacy blog and the slides that she uses
in the presentations she does around the world. She has used her own personal experience to teach
those of us working in the healthcare world what patients and their families want and need. As you go
through her slides, in addition to her compelling story, please consider the points that she makes about
sharing information, privacy, making the records available, treating patients and their families as active
co-participants in their care. Consider how she has used the internet and social media as a resource and
consider the issues and risks with this – we will debate this in our discussion forum. She speaks of
Electronic Health Records, Health Information Exchange. You might also want to consider how Regina
uses art, graphics, visuals, story-telling techniques to convey her message. When you put together your
slides for the group project, you might find some of those techniques effective.
Figure 1 - Regina and one of her jackets from the Walking Gallery
Source: Regina Holliday's Medical Advocacy Blog
Without Regina to narrate her story, some of the context may be lacking. While this summary is brief, it
should give you the important components. Regina tells the story of her own difficult childhood, but even
when young understanding the importance of information, measurement, and being informed. When her
husband becomes ill, the examples become even more poignant. They go through a series of
misdiagnoses, because the system is fragmented, information not shared, assumptions made, and tests
are not performed. She must advocate to get him an MRI. She struggles to get information … at first
they are only told he has tumours. As she asks questions in the hospital, the physician takes offense and
suggests she can make an office appointment to talk with him. Note her painting of visiting his office:
Figure 2 - “Office Hours” artwork by Regina Holliday
Source: Regina Holliday's Medical Advocacy Blog
She is on her knees trying to get information. He is on the phone. One of the office staff is complaining
about someone parking in her parking spot. On the back wall you will see a faint outline of Regina’s
family – because that’s what this is all about. She wants to see his medical record, and uses the analogy
of getting an advance copy of the latest Stephen King novel, which she is able to do in a few days. For
the medical record, she’s told she must pay 73 cents a page for and it will take 21 days.
When she does finally get the record, she finds many mistakes and critical information that was
overlooked … information that may have made a difference in the diagnosis and outcome. She had to do
her own research, find her own experts, and advocate on behalf of her husband. But it was too late. After
his death, she started using her art in her advocacy work. Hopefully her message is getting through and
we are moving towards recognizing the critical role the patients and their families play in their health
care, and that sharing information with them is a good thing … electronic solutions will help to improve
the situation.
Regina ends this presentation with “The patient story is sometimes dark and sometimes light. But both
are needed for a masterpiece. And the picture is not complete unless we are all part of the picture. “ This
is why we felt the need to include a lesson with the focus on the patient. We have considered other
stakeholders in our previous lessons – the clinicians, physicians, funders, administrators, informaticians.
But the patient should be at the centre of all of our work.
Whether building a new application for collecting patient information, putting in alerts to identify risk and
safety issues, designing scheduling options, developing policies and practices to ensure privacy and
confidentiality are maintained, the IT and Informatics world must always come back to the first principles
of what is best for the patient.
Activity
Review Regina’s slides below and consider how information, technology, and practice changes
could be improved to better support the patient’s needs:
Regina's Story: A Patient and Caregiver Perspective [PowerPoint]
You can access similar information through these alternative formats:
Watch Regina’s testimony video [5:34] to learn about her story

Listen to this radio report with corresponding text script
Patient Portals
Patient portals are excellent tools to help patients stay informed and engaged in their own health,
empower them, enhance communication with care providers, and improve outcomes. In the US, the
Meaningful Use legislation (since updated and overhauled and referred to as the Medicare and Medicaid
Promoting Interoperability Programs) requires patient portals to enable patients to access their
information.
A patient portal is the access gateway to the personal health record (PHR), which we have touched on in
other lessons. It is a secure online website that gives patients access to personal health information from
anywhere with an Internet connection. Using a secure username and password, patients can view health
information such as:
Recent doctor visits

Discharge summaries
Medications
Immunizations
Allergies
Lab results
Diagnostic images and reports
Some patient portals also allow patients to:
Exchange secure e-mail with their healthcare teams

Request prescription refills
Schedule non-urgent appointments
Update contact information
Make payments
Download and complete forms
View educational materials
Update allergy information
Record dietary, exercise, and other personal health information
The ways that information gets into the patient portal may be varied. Some portals are fed directly from
the electronic health record of the hospital and/or physician office. Some also enable patients to add
their own information, such as immunizations, allergies, etc. Some offer personal health journals, vitals
tracking, activity and food journals, and other tools to encourage self-management. Microsoft’s Health
Vault also enables uploads of data directly from monitoring devices. Access to the patient portal may be
shared with other family members or other care providers, with consent from the patient.
Patient portals can be useful tools for individuals with chronic illnesses, such as diabetes. Health
information technology with real-time interactions (glucose, blood pressure, physical activity) can assist
in chronic disease management.
As this is fairly new technology there is not a lot of research on the topic, but early studies do show high
levels of patient satisfaction, good uptake and adoption among some groups, and evidence of improved
outcomes.
Below are some screenshots from Sunnybrook Health Sciences Centre in Toronto. Their MyChart
application has received much attention and is viewed as a great example of a patient portal. I have
copied some parts from my own personal MyChart PHR for you to see the types of information that are
included.
Figure 3 - Opening screen in the MyChart application
Source: MyChart by Sunnybrook Health Sciences Centre
Figure 4 - Health record summary in the MyChart application
Source: MyChart by Sunnybrook Health Sciences Centre
Privacy and Confidentiality

In Canada we have legislation to ensure privacy and confidentiality are maintained. Federally we have
the Privacy Act and the Personal Information Protection and Electronic Documents Act
(PIPEDA). Each province also has its own legislation and guidelines. In Ontario we have what is referred
to as the Freedom of Information and Protection of Privacy Act (FIPPA), the Municipal Freedom
of Information and Protection of Privacy Act (MFIPPA), and the Personal Health Information
Protection Act (PHIPA). The oversight body of the Information and Privacy Commissioner (IPC) is an
independent body that serves to support consumers and organizations to uphold privacy and security.
The IPC website provides excellent resources for both consumers and privacy professionals.
When designing and implementing information systems in a healthcare setting, all of the privacy and
security guidelines must be considered. Ontario’s former privacy commissioner, Ann Cavoukian,
developed Privacy By Design principles that are considered best practice guidelines worldwide. Please
review them at this link: The 7 Foundational Principles [PDF].
Patients have privacy rights and healthcare practitioners have a duty to protect patients’ confidentiality.
The other component to consider is security – protocols, policies, mechanisms that are required to
protect data privacy and ensure confidentiality. In addition to policies, these are often structural
safeguards. Our textbook outlines these components well.
Now Back to Regina’s Story

Below are some quotes from a blog article posted by Michael Millenson, a visiting scholar at the Kellogg
School of Management and author of Demanding Medical Excellence: Doctors and Accountability
in the Information Age. The link is below in case you want to read the whole article, which compares
Regina with Rosa Parks, indicating that we are at an important phase in the way we view the current
situation of access to our health records.
Will Regina Holiday Become Health Care’s Rosa Parks? by Michael Millenson
Mr. Millenson writes:
“... like Parks, Holliday is part of a larger community that shares a similar outrage over being
relegated to the back seat, even if in the doctor- and hospital-dominated world of health care,
the ‘back of the bus’ is symbolic rather than literal. Her protest drew expressions of support
from the National Partnership for Women & Families, the Center for Democracy and
Technology and others. But the key to whether this protest is a turning point may lie in a
phrase used in a letter supporting immediate access from the Society for Participatory
Medicine, to which Holliday belongs. (Disclosure: I’m a Society board member and a friend of
Holliday’s, but did not draft the comments.)
The Society wrote: ‘The overarching principle with respect to patient access to electronic
health record data… should be: ‘Nothing about me, without me.’ “
-----------------------------------------------------------------------------
“The problem, as The Silent World of Doctor and Patient defined it so insightfully more than a
quarter-century ago, is that many providers genuinely believe it is their duty to act as ‘rational
agents’ on the patient’s behalf without asking the patient’s opinion. In contrast, ‘nothing about
me without me’ is the patient’s demand for freedom and, yes, the responsibility that comes
with it.”
-----------------------------------------------------------------------------
“What distinguishes Holliday’s effort is the power of information access in the digital age.
‘Give us our damned data’ means possessing the raw clinical material that lets us partner
with our own doctors or choose other clinicians who better meet our needs. We can go ‘off
the grid,’ perhaps ‘crowdsourcing’ questions to others, or we can apply that digitized
information to treatment recommendations and outcome prediction algorithms based on the
same evidence our doctor uses.
Demanding access to our digitized information immediately, rather than when it is convenient
for the doctor and hospital to give it to us, is a stark declaration that it is our health and our
lives that are immediately at stake: ‘Nothing about me without me’ from our first cry for food
on the day we are born and then every day after. “
Regina provides the link to this blog on her own website and encourages us to engage in discussions
with our own practitioners and become advocates. As potential professionals in the informatics field, we
have an excellent opportunity to open the doors wider than they are, to ask the right questions, to
challenge the status quo. As technology becomes more pervasive in the healthcare environment, the
opportunities for accessing information, for accumulating data, for better analysis, for decision support
tools such as alerts and follow-ups all can prevent some of the missteps that occurred to Regina and her
family as they tried to navigate the healthcare system.
Final Thoughts
For consideration …
Regina speaks of a situation where a patient viewed a part of his record that read “the patient is morbidly
obese.” The patient took exception to the statement and began a discussion with his physician. The
physician said there was a good way to correct that documentation. And 60 pounds later, the record no
longer used that language.
In some charts we use short forms, such as SOB for shortness of breath.
Sunnybrook has a great story of a patient with a serious illness with MyChart access who was
hospitalized in Mexico. She feels her life was saved, as she was able to show the physicians the
information about her illness, the treatment, and the medications she was on.
The paper-based world that Regina and her husband had to deal with might have contributed to some of
their problems. If there had been electronic alerts to results that were abnormal, follow-up alerts when
items were missed, checklists to assist and remind, decision support and analysis tools to aid the
clinicians in diagnosis of complex issues, the outcome might have been different.
Assignments and Activities

Discussion Board
Discussion #1: Patient Information
The idea of openly sharing all of the patient’s information with the patient and family is still
somewhat controversial. Reflect on that idea and respond to the following:
What do you see as the potential risks with this?

What about the benefits we haven’t identified?
Is our reluctance a remnant of another era, when physicians were the knowledge holders
and we were not informed consumers?
Post your responses to this week’s questions on the Discussion Board for Module 6. Feel free to
ask each other questions, challenge each other, and learn from each other. Let’s debate these
issues.
Assignments
Reminder: Test 1 will release during Week 6
Assignment 1 is Due at the end of Week 6
References
Cavoukian, A. (2011). Privacy by design principles. Retrieved from
https://www.torontomu.ca/pbdce/certification/seven-foundational-principles-of-privacy-by-design/
Regina Holliday’s Medical Advocacy blog. Retrieved from http://reginaholliday.blogspot.com/

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6/8/24, 3:04 AM CHIM305, Module 6 - Topics

Textbook: El Morr, C. (2018). Introduction to health informatics: A Canadian perspective

Chapter 11 – Privacy, Confidentiality, and Security

Cavoukian, A. (2011). Privacy by design principles. Retrieved from

A Case Study – Regina Holliday

Source: Regina Holliday's Medical Advocacy Blog

Figure 2 - “Office Hours” artwork by Regina Holliday

Source: Regina Holliday's Medical Advocacy Blog

Regina's Story: A Patient and Caregiver Perspective [PowerPoint]

You can access similar information through these alternative formats:

Watch Regina’s testimony video [5:34] to learn about her story

Recent doctor visits

Some patient portals also allow patients to:

Exchange secure e-mail with their healthcare teams

Figure 3 - Opening screen in the MyChart application

Source: MyChart by Sunnybrook Health Sciences Centre

Figure 4 - Health record summary in the MyChart application

Source: MyChart by Sunnybrook Health Sciences Centre

Privacy and Confidentiality

Now Back to Regina’s Story

Mr. Millenson writes:

Assignments and Activities

Discussion #1: Patient Information

What do you see as the potential risks with this?

Reminder: Test 1 will release during Week 6

Assignment 1 is Due at the end of Week 6

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