Consumer Informatics: The Elderly and the Internet

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Consumer Informatics: The Elderly and the Internet
Introduction
The Internet has changed how people participate, evaluate and learn
about factors relating to their own health care. [1] Over 93 million adults
(Pew 03) now use the Internet to locate information about specific diseases,
medical problems, medical treatments and procedures, diet and fitness,
check out their physician’s credentials, and determine for themselves, the
efficacy and safety involved in taking a specific medication.[2, 3 ] However, as
Internet usage continues to grow, differences in how demographic groups
use this resource to locate health related information are becoming more
pronounced.
In a survey by the University of Pittsburgh [4], it was discovered that 62%
of the residents of Pittsburgh and surrounding Allegheny County had access
to the Internet. However, the average older adult in Allegheny County, the
second largest population of older adults in the nation [5], had the lowest
levels of computer ownership and more limited access to the Internet than
other county residents. Furthermore, these elderly adults, who make up
17.8% (228,416) of the county’s 1,281,666 residents lacked the essential
knowledge of how to use the Internet to locate health information.
Nationally, research[6] shows that older Americans are in danger of being
cut off from one of the most provocative communication mediums of the 21st
century. In the United States, older adults make up 13% of the population
with only 4% using the Internet. Overall, 56% of America is online and out
of that percentage, only 15% age 65 and over have direct access to the
Internet[7] 93 million American adults use the Internet to locate health
related information, with only 4 million aged 65 and older
[8].
Furthermore,
because older adults are more likely to use health care resources, knowledge
of how the Internet can be used to locate health information to better one’s
health care outcomes would benefit senior citizens. Thus, this study
explored the impact the Internet had on older adults with regard to their
beliefs in how much they participate in their own health care, and how they
used the Internet to locate health information.
Methods
To facilitate the training of the elderly, a large suburban Pittsburgh public
library and two senior community centers agreed to sponsor a series of
Internet training seminars and made their resources available to the
research team. The decision to use the library and the senior community
centers as the settings for the training was based on the fact that elderly
participants who did not have a computer at home could use the computers
in these facilities to search the Internet. The choice of training centers also
allowed the research team to reach a wide range of individuals with varying
socio-economic backgrounds. The training sessions were advertised in two
local newspapers, a local suburban magazine, and a local senior citizen
newsletter. Flyers were also placed in the library and senior community
centers where the training was to take place. The sessions were five weeks
in length, meeting once a week for two hours. Participants were asked to
commit to attending all five sessions. Each session began with an overview
of the day’s topic, followed by intensive hands-on instruction and practice.
The sessions used constructivist teaching techniques and self-directed
learning. Constructivism emphasizes placing the learner in a situation where
she learns to solve a specific problem—i.e. locate information related to her
health care. This allows the learner to construct knowledge that is more
meaningful and useful to the learner for recall in future problem solving
scenarios. Each lesson used a different method for engaging the participant
to find medical information that was relevant to her individual needs. Small
groups of approximately 10-12 made individual attention possible for the
hands-on portion of each session. A course packet was provided to the
participants to serve as a reference for future use.
Data Collection
Pre and post questionnaires were distributed at the beginning and end of
the five-week training session. The surveys were designed to capture
baseline information about the participants experience using computers and
their experience searching the Internet. The surveys also measured
participants levels of anxiety toward computers, levels of self efficacy, and
their health locus of control. The results of these measures are reported in
Campbell (2004).
To measure participants levels of perceived participation and heath
information seeking behaviors, a 17 question Internet Survey was
developed. This survey was designed to elicit participant’s feelings in three
areas: level of participation in their health care, use of the Internet to locate
health information, and use of the Internet to locate health information
before and after a visit to their health care provider.
Participants
A total of 79 people, ages 60–83, with a mean age of 69.76, selfvolunteered for the Internet training, with 70 completing the five week
program. Of those 70, 58 (83%) were female and 12 (17%) were male.
Twenty-five (35.7%) had post-graduate training, 18 (25.7%) had a college
degree, 12 (17.1%) had some college or technical degree, 12 (17.1%) had a
high school degree, and 1 (1.4%) had less than a high school education.
Fifty-four (77.1%) were retired, 4 (5.7%) worked full-time, 6 (8.6%) parttime, 1 (1.4%) was not employed, and 5 (7.1%) considered themselves
home makers. Sixty-three (90%) had used a computer an average of 10 or
more times, while only 7 (10%) had never used a computer. Fifty-three
(76%) had a computer at home, while 17 (24%) did not. Those with a
computer used it on average 4-6 times per week. Thirty-eight (54.3%)
stated that they had used their home computer to search for information on
the Internet, while 25 (35.7%) did not. Thirty-nine (56%) had made use of
a computer in a public library or senior community center an average of 10
or more times, while 31 (44.3%) did not. Twenty-five used a public
computer to search for information on the Internet, while 29 (54%) had not.
Forty (57%) never used the Internet to search for health information,
compared to 30 (42.9%) who had searched for health information on
average for a total of 4-6 times. Forty-six (66%) had used electronic mail
compared to 24 (34.3%) who did not. Sixty-five (93%) had never joined an
online support group, chat room, or news group, while 5 (7.1%) had done
so. Fifty-nine (84.3%) had a health problem, and out of that number, 45
(64.3%) had an illness that was chronic in nature. Eleven (15.7%) did not
have a health problem. Finally, 56 (80%) of the participants believed that
the Internet could be used to help them manage their health care, opposed
to 14 (20%) who did not know.
Results
Descriptive statistics:
Internet surveys were mailed to 70 participants. From that number, 52
(70%) completed surveys were returned. When asked if their levels of
participation had changed since they were introduced to the Internet 33
(63.5%) said yes, while 19 (36.5%) said no. 45 (86.5%) had looked up
health information on the Internet. Of those 45, 1 (1.9%) used the Internet
daily, 5 (9.6%) used it weekly, 14 (26.9%) used it monthly and 24 (46%)
responded to Other. 46 (88.5%) had seen a health care provider in the last
six months. When asked what role they played in their last visit, 6 (11.5%)
said that their doctor made all the decisions and they just followed them; 3
(5.8%) stated that they made the decisions and they asked their doctor to
state his/her opinions; 39 (75%) stated that they played a collaborative role
with their doctor, and that they worked together to make important
decisions; and 2 (3.8%) selected Other. When asked if they had used the
Internet prior to their visit with their doctor, 23 (44.2%) responded Yes, and
25 (48.1%) responded No. When asked if they used the Internet to prepare
a list of questions for their doctor 18 (34.6%) said Yes, and 30 (57.7%) said
No. When asked how many questions they asked their physician at their last
visit, 3 (5.8%) asked one question, 23 (44.2%) asked two-three questions,
12 (23.1%) asked 4-5 questions, and 10 (19.2%) asked six or more
questions.
Asked if they had used the Internet to locate health information after visiting
their health care provider, 19 (36.5%) said Yes, while 27 (51.9%) said No.
Finally, when asked if they had a set of medical web sites they used to
retrieve health care related information, 25 (48.1%) said Yes, and 18
(34.6%) said No.
Inferential Statistics:
To gauge perceived levels of participation in their health care,
participants were asked two questions. The first question asked participants
to rate, on a scale of one to five, with one being no participation and five
high participation, what their levels of participation were before they were
introduced to the Internet. A second question, asked participants to rate
their current levels of participation on the same scale. Using a Wilcoxian
Signed Ranks Test, significance (.000) was found between the two scores.
Meaning, after participants were introduced to the Internet, they perceived
that their levels of participation in their health care increased.
Textual Comments
To gain more insight into how participants used the Internet to locate
health information, and how that information influenced their relationship
with their health care provider, participants were asked the following five
questions:
1. What type of Health Information did your search for?
2. What influence, if any, did the Internet have on your relationship with
your health care provider.
3. Did you share the information with your health care provider.
4. If you used the Internet to locate health related information after a visit
with your health care provider, for what purpose did you search the
Internet?
5. What anecdotes do you want to share regarding your experiences using
the Internet to locate health information?
The responses to question one were broken down into three categories:
General Topics (26 (57%)), information such as throat swallowing, back
surgery, cochlear implants, and blood pressure; Medication Information
(16 (35%)), and Specific Information (3 ( 6.6%)) such as “How do you
treat liver disease”, or “What causes cloudiness in the cornea after cataract
operations.”
Responses to the question: What influence, if any, did the Internet have
on your relationship with your health care provider, were grouped into four
categories: No Change, Improved Communication, Personal
Empowerment, and Conflict. 12 (26%) participants reported No Change
in the relationship they had with their health care provider, while 11 (24%)
reported that Internet use Improved Communication with their provider.
Typical comments in this category included: “I gathered information about
my condition and discussed it with my physician.”, and “My interest and
participation in my health care was accepted. In fact, it influenced changing
of medications and seeing another M.D.” In the third category, Personal
Empowerment, 19 (42%) gave responses that illustrated a more confident,
self actualized individual who was not intimidated by their health care
provider. The Internet, based on participant’s comments, gave them the
power they needed to play a more active role in their health care.
Responses from this category included: “I feel that I am more comfortable
asking questions when a medication is prescribed. I’m not as intimidated
since I feel that I possess the tools to check when in doubt”, and “I am not
as hesitant in asking questions about my own health and making
suggestions for possible treatment.”
The final category, Conflict, found several participants 3 (6.6%) had an
adversarial relationship with their provider. Use of the Internet to locate
health care information placed a strain on the relationship and created
friction between the participant and their health care provider. Comments in
this category included: “The Specialist/Oncologist didn’t have the facts and
information that I had. When I asked questions he was very vague. I was
not willing to take the medication (and told him so) and he wrote out the Rx
anyway and then tried to end the appointment as soon as he could. He
didn’t seem to like my questions and my ability to think about my decisions”,
and “I moved from one doctor to another. The first one was bored. The
second one was not too receptive of my mentioning the Internet..”
The third question: Did you share health information found on the
Internet with your health care provider? If so, what was their response,
revealed that participant replies fell into one of three groupings. Participants
either Did Not Share Information, Did Share Information and
Received a Positive Response, or Did Share Information and
Received a Negative Response. In the first grouping, 18 (40%)
participants did not share health information with their provider. In the
second grouping, 16 (35%) participants shared information and received a
positive response. Comments included: “[Physician] Pleased and
encouraged me to learn and be involved with my care in whatever method
that opened up to me”, as well as, “He [physician] was very interested.”
In the third grouping, 11 (24%) participants shared information with
their provider but received a negative reaction. In this grouping
participant’s comments showed initial defensiveness on the part of their
health care provider to total disregard to the information found on the
Internet. Cogent comments include: “Most doctors have been defensive.
My mother’s primary care doctor, although a bit defensive, realized that I
knew all about her disease and that I knew more about the newer
treatments that he did. He was willing to compromise with me on the
treatments”, and “Don’t believe all you see and hear; lots of ‘experts”
around’, as well as, “He [physician] wasn’t familiar with it and said
something disparagingly: ‘I don’t know where you got your information.’”
Question Four asked participants whether they used the Internet to
locate health information after a visit with their health care provider. 19
participants identified themselves as having done so, and from their
comments, three distinct categories appeared. After a visit to their doctor,
participants either used the Internet to Check on Medications, find
Updates to Information Concerning a Specific Health Problem, or to
Verify Information they were told during their most recent visit to their
health care provider. In the Category One, 8 (42%) participants used the
Internet to learn more about prescribed medications and their
contraindications. Typical comments in this category included: “To
determine the side effects of medication prescribed”, and “Checking on
interaction of medication.” In Category Two, 3 (15%) participants, used the
Internet to find updates on information related to their own health problems.
A typical comment in this category was: “I again compared the different
sites to see if any updates had occurred, as you know health information
always been updated by new research.” The final category, found 8 (42%)
participants used the Internet to verify what their health provider had told
them during their last visit. A typical comment found in this category was:
“To verify validity of health provider’s information.”
The final question asked participants to share Anecdotes that typified
unique experiences they encountered using the Internet to locate health
information. From those comments, five categories appeared. Those
categories included: No Unique Experiences, General Comments,
Constraints, Enjoyed Introduction to the Internet, and Positive
Health Outcomes. The first category, contained 16 (35%) participants
who did not have any unique experiences to share. In the second category,
3 (6.6%) participants made general comments in reference to their Internet
experiences. A typical comment was: “Sometime I have to read a lot of
material to find satisfying information. Many times I learn information that
my doctor is not aware of. Sometimes the side effects of medicines are
frightening.”
6 (13%) participants in the Category Three experienced constraints when
trying to use the Internet to locate health information. For instance, one
participant stated: “Since I use WebTV, it is sometimes difficult to access
some websites, especially JAVA is not accessible with WebTV.” Another
participant voiced another type of constraint that is endemic to older
populations: “ Illness has prevented my access to the Internet. I am
improving now….and plan to use the Internet for medical and health
information.”
In Category Four, 10 (22%) participants made statements that showed
how much they enjoyed being introduced to the Internet. A typical
comment was: “Excellent course and materials. I plan to use them for
reference when needed.” In the final category, participants 8 (17%)
provided remarks that detailed how their use of the Internet lead to positive
health outcomes. The following comment is typical of those found in this
category: “I think the use of the Internet helped save my mother’s life. She
had clostredeum difficile and a bacterial infection that was not responding to
antibiotics. I was able to discuss the mechanics of the disease with my
mother’s doctor. He was willing to try a different drug along with probiotics. I knew that the pro-biotics he suggested and the dosage was too
low and ineffective. I then told him that I used a more powerful pro-biotic in
a much stronger dosage. But it worked!”
Conclusion
The results of this study revealed two significant conclusions. First, even
though the population of this study was based on a group of self volunteers,
it is evident that women have an active interest in using the Internet to
locate health information. The fact that more women than men volunteered
to take part in the study is not surprising as past research
[10,11,12,13]
shows
that women actively participate in their own health care and ask more
questions during office visits. Use of the Internet to locate health related
information would be one more tool in a woman’s arsenal to further enable
her participatory roles.[9] The second conclusion is that the Internet provided
older adults with both perceived and actual abilities to participate in their
own health care. When asked if they participated more in their health care
since being introduced to the Internet, 33 (63.5%) participants answered
yes. This fact was further substantiated by a Wilcoxian Sign Test that
showed subjects experienced significant (.000) levels of perceived
participation in their health care once they began to using the Internet to
search for health care information. When questioned further, participants
felt that the Internet empowered them to ask more questions of their health
care provider, and to use the Internet as a means of verifying information
shared with them by their provider.
Discussion
Recent research[7] shows that as older adults go online, a majority (53%)
of them will use the Internet to locate health related information. Subjects
in this study were most interested in locating information on general health
topics, prescription drugs, and to verify what they had been told by their
health care provider. As older adults begin to use the Internet, this study
shows that they begin to perceive themselves to be taking a more
participatory role in their health care, and to work more collaboratively with
their health care provider. . Future studies should look at more quantitative
methods of validating older adults claim of greater participation in their
health care. For example, during a visit with their health care provider, do
older adults using the Internet, ask more questions of their provider, and
ask for more detailed explanations in regards to a specific health problem.
Another important consideration is how to get more men involved in using
the Internet to find health care information. In this study and others
[8 ]
a
majority of the participants were women.. Studies have shown that patients
who ask questions, elicit treatment options, express opinions, and state their
preferences regarding treatment during office visits with their physicians
have measurably better health outcomes than those who do not
communicate.[14] Therefore, engaging these individuals could impact their
health outcomes.
Another area ripe for future research is how Internet usage by the elderly
impacts costs, utilization, and overall health. For example, does use of the
Internet lead to quicker diagnosis, treatment, and recovery, therefore,
eliminating present and future burdens on an already stressed health care
system. Or does Internet usage lead to higher utilization of services
because patients request that more tests and procedures be performed to
diagnose a particular health problem, even when those tests are not
warranted. Finally, does Internet use to locate health information truly help
the elderly who are ill get better quicker, and those who are healthy
maintain their present state?
References:
1.
Fox, S., Rainie, L., The online health care revolution: How the Web
helps Americans take better care of themselves. 2000, The Pew
Internet & American Life Project: Washington, D.C.
2.
Ferguson, T., Online patient-helpers and physicians working together:
a new partnership for high quality health care. British Medical Journal,
2000. 321(7269): p. 1129-32.
3.
Campbell, R. J., Consumer Health, Patient Education, and the Internet
Internet Journal of Health, 2001. 2(2).
Available online at:
http://www.ispub.com/ostia/
index.php?xmlFilePath=journals/ijh/
vol2n2/consumer.xml
4.
The Graduate School of Public and International Affairs., Consumer
health information in Allegheny County. An environmental scan. 2000,
University of Pittsburgh: Pittsburgh, PA.
5.
Rostein, G., Allegheny still second oldest big county in United States,
in Pittsburgh Post-Gazette. 2001: Pittsburgh, PA.
6.
Brodie, M., Flournoy, RE, Altman, DE, Blendon, RJ, Benson, JM,
Rosenbaum, MD., Health information, the Internet, and the digital
divide. Health Affairs, 2000. 19(6): p. 255-65.
7.
Fox, S., Wired Seniors: A fervent few, inspired by family ties. 2001,
The Pew Internet and Life Project: Washington, D.C.
8.
Fox, S., Rainie, L., Vital decisions: how Internet users decide what
information to try when they or their loved ones are sick. 2002, The
Pew Internet & American Life Project: Washington, D.C.
9.
Campbell, R. J., Older Women and the Internet. Journal of Women &
Aging, 2004. 16(1).
10.
Arora N.K., McHorney, C.A.
Patient preferences for medical
decision making: who really wants to
participate? Medical Care, 2000.
38(3):335-341.
11.
Wallen, J., Waitzkin, H & Stoeckle,
J.D.. Physician stereotypes
about female health and illness.
Women Health, 1979. 4, 135-146.
12.
Mechanic, D. Sex, illness behavior and
use of health sciences. Social Science
& Medicine, 1978. 12B: 207-214.
13.
Nathanson, C.A. Sex, illness and
medical care. Social Science &
Medicine, 1977. 11: 13-25.
14.
Kaplan, S., Greenfield, S., Ware, JE Jr.
Assessing the effects of physician-patient interactions on the outcomes
of chronic disease. Med Care, 1989. 3 Suppl: p. S110-27.
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