Transcript What Patients Want from their Personal Health Records

What Patients Want
from their
Personal Health Records
Barbara M. Wildemuth
School of Information & Library Science
University of North Carolina at Chapel Hill
Personal health record: Definition
A PHR is “an electronic, lifelong resource of health
information needed by individuals to make health
decisions. Individuals own and manage the
information in the PHR, which comes from
healthcare providers and the individual. The PHR
is maintained in a secure and private environment,
with the individual determining rights of access.
The PHR does not replace the legal record of any
provider.” (Burrington-Brown et al., 2005)
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Do people keep health records?
• 42% of adults keep some type of health record (Harris
Interactive, 2004)
– 58% of adults over 65
– 13% of those who keep records have electronic records
• 83% of respondents believe they should have access to their
medical records, though only 4% have actually tried to
access them (Pyper et al., 2004)
• Four modes of record-keeping (Moen & Brennan, 2005):
–
–
–
–
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just-in-time
just-at-hand
just-in-case
just-because
PHR use: Current status
• As of 2003, about 250,000 Americans have access to
a PHR (Markle Foundation)
• 79% of patients “think it is a good idea to make
health records electronic” (Pyper et al., 2004)
• 42% of people keep medical records in some form;
of those who don’t, 84% believe that they should
(Harris Interactive, 2004)
• 36% of patients would like to be able to add
information to their medical records (Pyper et al.,
2004)
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PHRs: Current applications
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Large-scale studies of PHR use
• Cimino et al. (2000): PatCIS used by patients to view test
results
• Hassol et al. (2004): 1/3 of patients reported gaps in the
record; 1/4 reported inaccuracies
• Wang et al. (2004): System used primarily for
communication between patients and care providers
• Denton (2001): 37% were still using PHR 10 months after
receiving it
• Ertmer & Ückert (2005): After using a free PHR, 71% said
they would not pay for it
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Patient perceptions of PHRs
• Benefits of PHRs:
– Can better participate in health maintenance (Ross et al., 2005;
Harris Interactive, 2004; Markle Foundation, 2005)
– Support better communication between patient and provider (Tang
et al., 2005; Harris Interactive, 2004)
– Would improve patients’ understanding of medical conditions and
physician’s instructions (Ross et al., 2005)
• Concerns about PHRs:
– Privacy and security (Pyper et al., 2004; Harris Interactive, 2004)
– Inaccuracy and incompleteness of records (Harris Interactive, 2004;
Markle Foundation, 2005)
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Research questions
• How do people maintain their personal health
records now?
• What are the purposes for which people might
create and maintain electronic PHRs?
• What types of data do people want to keep in an
electronic PHR?
• In what ways do people want to interact with their
PHRs?
• What concerns do people have about electronic
PHRs?
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Study participants
• Parents with young children (n=11)
– Amy, Cary, David & Bree, Edouard, Elinor, Ellie, Helen, Kevin,
Marge, Monica*, Tony
• Adults with chronic illnesses (n=13)
– Becky, Jane, Joyce, Kail, Marie, Matt, Megan, Melissa, Mike,
Samantha, Sharon, Sonia, Tim
• Adults caring for older parents (n=9)
– Cathy, Evelyn, Judy, Kim, Margaret, Monica*, Nadia, Sandy, Sharie
• Older adults (n=11)
– Bel, Deb, Geneva, Herman, Isaac, Jack, Martha, Max, Peter,
Philip, Victor & Sarah
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Semi-structured interviews
• Ways that current records are kept
• How/where PHRs are and should be
stored
• What information a PHR should contain
• PHRs for family members
• Who should have access to the PHR
• Ways that records can be searched and
sorted
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Results related to current records
•
•
•
•
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Current status of participants’ records
How they’re organized
What they contain
How they’re used
People keep some records
• Calendar, planner, diary
– I do have a planner and I'll mark down if I have a doctor appointment. So
if I really wanted to see when my last appointment was, I could look back
and see because I have my planners from the last few years. -- Elinor
• File folders
– How I have it is a folder of medical receipts for each year that I keep to
add up for taxes. – Amy
• Lists or notes
– I just keep a notepad, an 8 by 10 notepad for short-run tracking of an
illness. – Kail
• Spreadsheet
– My wife gets physical therapy for carpal tunnel, and we have a
spreadsheet that keeps track of when, with whom, how much we paid,
how much we paid up front, how much the insurance covers. -- Tim
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Records are often organized by date
• Filed by date
– They are in my filer folders in a cabinet... probably chronologically. -Geneva
• Otherwise, may be organized by disease or test
results, by doctor, or by person (member of family)
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Types of information people keep
• Receipts, bills, insurance forms
– It’s a looseleaf book and it's our life, it's our tax life. I'm a painter, so
there's a section for art. There is one for insurance, one for medical, one
for contributions. In addition to that, there are physical billings, receipts,
and thank you’s. Then we have a book that's divided up into medical,
prescriptions, art, travel, etc. -- Jack
• Information about medications
– I keep records for my son, because he was born premature, 27 weeks. He
had a very rough start, and I have to keep track of his medications. I just
jot down what medications were changed, who changed them, etc. -- Ellie
• Lab or test results
– If there was a test done, then I was given the results, and those will be
in the folder. -- Bel
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How the records are used
• To resolve insurance claims
– Sometimes, when we have to pay the bills or when the EOB type things
make no sense, we put them together and try to figure out what’s going on.
-- Isaac
• For tax purposes
– How I have it is a folder of medical receipts for each year that I keep to
add up for taxes. -- Amy
• When seeing a doctor
– I have several illnesses, cancer, heart attack. I tend to collect information
by illness… I have an active folder that has to do with the current illness.
And it is located conveniently by the door. When I go to see a doctor and
when I want to get some information, I can grab it very easily. -- Philip
• When changing doctors
– I rarely see doctors… If I go to another doctor, I can bring along the
results of my physical I had when I was 40 so they can chart it as I go
along. -- Cathy
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Results related to the ideal PHR
•
•
•
•
•
•
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Purposes for maintaining a PHR
What it will contain
How the contents will be sorted/filtered
Who can read it
Who can write on it
Form of PHR; how and where it will be
stored
Purpose: Summarize medical history
• A particular illness and its treatment
– Reports on the history of an illness and all the treatments and medications
and what did or didn’t work, from the initial diagnosis to the cure or other
end. My mother got diagnosed with rheumatoid arthritis and she saw so
many doctors and was on so many drugs that it seemed no one could
figure out what the right thing to do was. -- Marie
• Medications
– Reports on, you know, medication trends. You know, if I took something
before or if I start to enter something again that I haven’t done before, if it
said ,“Hey, this is new, would you like to keep track of such-and-such?”
Side-effects, that would be great, if it popped up and said, “You’re
currently taking such-and-such, are you having any side-effects?” Because
I forget to put those in. -- Megan
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Purpose: Analyze trends
• Changes in symptoms over time
– Especially for ongoing issues, to try to figure out what had been done. If I
had a log of when I'd been feeling bad and how often it was, trying to
figure out whether or not things had changed. Because for long term
issues, I don't keep a log, but then I always wish that I had because it's
actually really hard to tell sometimes if I'm getting better or worse. -- Tim
• Tracking health indicators or test results
– I think for my own self, it would be cool to plot out from a ten year period
or whatever, things like cholesterol level, the IDL and HDLs. And blood
pressure. The kind of things that matter. -- Evelyn
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Purpose: Communicate with doctor
• To aid in communication
– The main thing is to use it as a way of interacting with the doctor so we
both keep track of what's happening. That's the no. 1 purpose I see for it. –
Kevin
• To check record before doctor visit
– I would look at it just before a scheduled appointment, so I would know
what I was talking about when I went to see the doctor, so I could be more
educated when I walked into the room. – Cary
• To record what happened during doctor visit
– Every time I saw Dr. Smith, what date I've seen him, what we discussed,
what medication did he change, anything like that… I would see the
patterns of how I see him. -- Geneva
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Purpose: Handle an emergency
• When injured
– Even if you are in a car accident locally, and you are unconscious ,it would
be good to be able to plug in to something that would see drug interactions
or your past history. I can see security problems with it , but it would be
nice. -- Nadia
• When traveling
– One thing that crosses my mind is that... I want to know about
international aspects of this. The records could be accessed by a physician
in Belgium? That would be.. if I have a heart attack in Belgium, could the
physical get my records, previous heart tracing and this kind of stuff ? That
would be useful. --Edouard
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Content related to treatment
• Doctor visits
– I’d like to keep a record of each doctor visit, and the reason why. -- Kevin
• Medications
– My son has asthma and he takes his medicine everyday. We just changed his
medicine. He's done so well that we actually stepped back a little bit on his
medicine. That would be an important thing if I were to keep better records to know
exactly when he stepped back so if there is a change we can look back and know
when that occurred. -- Cary
• Lab test results
– It would be interesting to me to have access to my lab work, so I can compare the
labs and see if there is any correlation between a period when I'm feeling bad and
what my labs were looking like then, compared to when I'm feeling better. -Samantha
• Immunizations
– I really want to put in immunizations because I see that as a real problem now.
We live longer so we really need to be re-immunized. I travel to foreign
countries. So that's really the thing I want to keep the abreast of. --Martha
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Content related to health status
• Family history, including genetic history
– I'm interested in genealogy and family history. And my father died two
years ago. Before that I was communicating with him about family history.
I want to know how my grandparents died and what causes might be
important for just my own medical history. -- Edouard
• Diet and exercise
– I suppose if I were on some regimen of exercise, it could be a way of
keeping track of which exercises to do. I’ve done some weightlifting and
it's good to vary the exercises you're doing. So perhaps a system like this
could give you a reminder of what you need to do each day, sort of keep
track of the rotation of things. -- Kevin
• Lab test results
– I think it probably would be helpful to look at things like blood
pressure over time. That’s not really a lab test, but it’s more a
maintenance-y kind of measure. -- Jane
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Sorting the records in the PHR
• By date
– I would want to sort it by date, so I would be able to see a period of time. -Joyce
• By illness/condition
– There was a time that I had headaches. I went to a series of different
doctors. I found it is caused by my eye lids -- I had a droopy eye lids… So I
want to be able to sort by illness. -- Max
• By test
– Maybe have lab reports in a folder, maybe even not chronologically, just
what they are. Here is the lab results. Here is results for all the physical
exams. Here is the result of my cholesterol. --Evelyn
• By doctor
– Certainly chronologically. Certainly by clinic, by physician. --Max
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Filtering the records in the PHR
• By date/time/season
– I can see a date filter. Although I've been tracking my thyroid for three
years, at some point I'll only care about the most recent two years. -Monica
• By illness/condition
– It would make sense to link the records by illness or by issue, whatever that
might be. For example, when my son had pneumonia, if I could somehow
link all those visits and prescriptions for that one illness, I could just view
that. --Kevin
• By doctor or type of doctor
– You could do it based on, for the hospital, all the hospital records, or all his
eye doctor records, or all of his cardiologist records... All of his
physical therapy things. -- Tony
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Issues related to PHR access
• Those providing care should have access
– If I was under the care of a doctor for a particular illness, I would say OK,
you can look at everything. Because who knows what might affect it,
contribute to it or might be affected by it. –Judy
– I mean, I feel like, you know, in my opinion, full, unrestricted access for
physicians. I think physicians could do their job better if they had more
information at their disposal. --Mike
• Patient should have fine-grained control
– The best thing would be if the user could control who had access. --Kevin
– I would like to be able to pick out what fields that I would like to include
there. What things I believe he really doesn't have to know. It is nice to
have the control rather than turn over the whole database. -- Evelyn
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Sharing the PHR across care providers
• Benefits
– I have several physicians… I would like there to be some easy exchange
among them. --Martha
– I guess the situation I see as most problematic is when you shift from one
physician to another for whatever reason. You know, getting those answers
transported takes a lot of time, can be cumbersome… And a lot of times I
felt like I was sort of made responsible for making sure that Specialist A
knew what Specialist B had done. --Mike
• Concerns
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– Q: What if the record included things that happened outside of the Duke
system?
G: I don’t know why that doesn’t sound quite right to me. I suppose
because it's giving up a whole lot of autonomy to a doctor, that this way I
have a choice to do other things outside that system… If I wanted to do
something more alternative, which is what the acupuncture is, I would
like to feel that I’m doing that without anybody saying, “No, you
can’t ,”or “You shouldn’t”. --Geneva
Sharing the PHR with family members
• Need to share when in caretaker role
– I'm kind of, I wouldn't say the care taker, but I'm one of the people who
helps take care of my grandfather. He's 80 years old. He has a lot of health
problems… It's also important to have duplication of different people
knowing, because you never know who will be available to say, “This is
what's wrong with my grandfather”. --Sandy
– Just being able to keep track of my own health history and that of my
children… just being able to keep track ,so I know what I'm talking about
when I go see a doctor. --Elinor
• Privacy concerns
– The only reason that I would want access to a family member's
information is when there is some ongoing health problem that I was
involved in their care with. Other than that, no. I don't think that's any of
my business. --Bel
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Adding/editing data in the PHR
• Patient
– Personal notes
– Corrections to physician notes (added)
– Less important information (e.g., diet, exercise)
• Physician
– Anything that would go into the medical record
• Pharmacist
– Add medication information only; not even see other information
– Provide supplementary information about side effects and contraindications
• Family members
– Very few responses; mixed opinions
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PHR location/control (1 of 3)
• Personal physician
– I would be a little more concerned about security in the doctor's office,
because if someone were truly looking for health info, I suspect they would
go there instead of to an individual. And I would want my doctor to have
backups. --Cary
– I’m not sure I want somebody else to be able to read my records. And I
don’t know how good my physician’s protective system might or might not
be. In fact at the moment – this is completely an aside – I barely have a
physician. My physician disappeared! --Isaac
• Insurance company
– Insurance companies make too many decisions based on what they think,
not what your doctor feels is proper for you… I don't think that they have
any business in your medical records. –Deb
– I have to say I don’t trust insurance companies all that much… They are
not out there to help anybody, really. They’re out there to make money.
That’s not the attitude I would like a person who has access to all my
health records to have. --Geneva
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PHR location/control (2 of 3)
• Home computer
– Keeping my records on my home computer would be fine. But again, I
don't think we would update it, and we might not back it up. I think it
would be easily lost. Now, the home computer systems change so
frequently, it would become obsolete. It is very easy to lose records. -David and Bree
– I have mine at home. I just had a women that I work with, her son’s
apartment was just burglarized and the thieves took their computer stuff.
That would concern me. --Joyce
• Portable/mobile device
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– Computers are not perfect – they can be hacked. If people wanted to keep
them perfectly safe, they could download data onto a CD, and only the
template would be on the computer and you'd back the data up to
something else. That's one way of keeping it off a computer that could
get stolen, or could be hacked or whatever. --Helen
– I would like it to be on a CD or on something, not just sitting on my
computer. I am afraid it would get erased. --Martha
PHR location/control (3 of 3)
• Government agency
– I think people are getting skeptical about the government having too much
information about us. There are checks and balances, but no. --Cathy
– Incidentally, I'm not at all an anti-government person. I would like my
taxes to be raised, believe it or not. I think there are lots of things to be
done by the government… But health records, no. --Herman
• Third party
– If it was a program like Quicken, where you could enter your stuff.... I
guess the company has your tax info and then it is sent to the government
because they get to have it too. And then you also have it on your computer.
So it's kind of shared in three places... Something like that could work. -Amy
– Q: Would you be willing to have your records on an online website?
P: No, no, no. Who would own that site and who would have access
to it? --Philip
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Summary of initial findings
• How do people maintain their personal health
records now?
– They keep receipts, bills, and insurance forms,
information about their medications, copies of lab test
results, records of appointments
• In calendars and diaries, file folders, lists or notes, and
spreadsheets of information
• Usually organized by date
– They use the records to resolve insurance claims, for tax
purposes, when seeing their doctor, and when changing
doctors
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Summary of initial findings
• What are the purposes for which people might
create and maintain electronic PHRs?
–
–
–
–
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To summarize their medical history, including:
To analyze trends
To communication with their doctor
To handle an emergency
Summary of initial findings
• What types of data do people want to keep in an
electronic PHR?
– Information related to the treatment of particular
illnesses or conditions
– General information related to their health status
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Summary of initial findings
• In what ways do people want to interact with their
PHRs?
– View online and get reports
– Sort the records
– Filter the records
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Summary of initial findings
• What concerns do people have about electronic
PHRs?
– Who controls access to the records, for viewing
– Who controls access to the records, for adding/editing
– Where will the record be maintained
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Implications
• Issues in interface design
• Issues in access control
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Acknowledgements
• Co-investigators
• Catherine L. Blake, Kristina Spurgin,
Sanghee Oh, & Yan Zhang
• Funding provided by the National Cancer
Institute
• Supplemental grant PI: Gary Marchionini
• Primary grant PI: Barbara Rimer
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References
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