PRE-DIABETES

An Informatics Research Agenda

Barbara M. Hayes

School of Informatics, Indiana University, 535 W. Michigan Street, Indianapolis, IN, USA

William Aspray

School of Informatics, Indiana University, 901 E. 10

Street, Bloomington, IN, USA

Keywords: Pre-diabetes, informatics research, public health and community informatics, knowledge dissemination,

management alerts, information alerts, decision support, clinical guidelines, health literacy, technological

literacy, patient feedback systems, pharmacy feedback systems, laboratory feedback systems, interface

design, reminder systems, information quality, consumer informatics, security, privacy.

Abstract: The paper sets out a research agenda for practitioners of the relatively new, interdisciplinary field of

informatics who wish to improve the health experience for people who have susceptibility to diabetes – a

condition known as pre-diabetes. Using information technology tools and methods, but with sensitivity to

the social and organizational complexities of the health care system, the article suggests addressing a set of

problems that will improve the lives of patients and their friends and families, as well as making the

provision of pre-diabetes care more effective and cost-efficient. Topics include public health and

community informatics, knowledge dissemination, information alerts, decision support, clinical guidelines,

health literacy, patient, pharmacy, and laboratory feedback systems, interface design, reminder systems,

consumer informatics, and privacy and security issues.

1 INTRODUCTION

The healthcare industry is one of the last to heed the

call of the information revolution. Its relationship

with information technology is deeply conflicted.

Healthcare leaders recognize that transformational

IT will decrease the risk of many common errors,

streamline workflow and, in some instances, save

money. Advanced computational techniques may

uncover genetic predispositions to disease and

identify new and more targeted pharmacologic

agents. Despite these promises, the healthcare

industry faces tremendous challenges as it integrates

information technology into healthcare delivery. The

cost of the transformation is high. Patient privacy is

in jeopardy. And, by its very nature, IT threatens to

disrupt the treasured, traditional relationship

between physician and patient.

Healthcare is shaped strongly by the interaction

of human need, economics, social demographics,

and the complex organization of the healthcare

community. These interacting variables make

healthcare a subject well suited to study by the

relatively new academic discipline of social and

organizational informatics. This field of study,

which is pursued in approximately twenty

universities in the United States and a few other

universities (including the University of Edinburgh,

City University in London, National University of

Singapore, Singapore Management University, and

the IT University of Copenhagen) is not to be

confused with the similarly named programs in

Europe that are focused primarily on computer

hardware and software. The practitioners of this new

informatics discipline are faculty members with an

interdisciplinary mindset, a social science

methodology, and a familiarity with IT and its

applications.

It is difficult for a healthcare practitioner to find

out about research in social and organizational

informatics not only because the literature is

scattered, but also because it often appears in places

where the healthcare community might not typically

look. Nevertheless, healthcare information system

Hayes B. and Aspray W. (2008).

PRE-DIABETES - An Informatics Research Agenda.

In Proceedings of the First International Conference on Health Informatics, pages 17-27

 SciTePress

designers, healthcare policy makers, Medical and

Nursing Informatics researchers, and teachers need

to know about the discipline because it can improve

technological solutions in healthcare and quality of

life for patients. Since IT development and

deployment are becoming important adjuncts in the

treatment of chronic diseases such as diabetes,

awareness of social and organizational informatics

research is especially important to those who

develop, deploy, and assess those technologies.

Examples of these technologies include e-mail and

Internet-based support, consumer-centered personal

electronic health records, home monitoring systems,

telemedicine, decision support aids, and online

interventions.

Healthcare insurers and providers have made

substantial investments in IT in order to make their

care more effective and cost-efficient. Less attention

has been given to using IT to improve the lives of

patients and their families. This paper uses one stage

of a widespread and expensive illness, Type 2

diabetes, as a means of examining ways in which IT

can be used to improve the lives of patients when

social and organizational factors are considered in

the design and delivery of care.

Pre-diabetes lends itself to social and

organizational informatics study because tools for

managing that syndrome may be found in several

areas of IT: public health and community

informatics, knowledge dissemination and

management, decision support, health literacy and

technological literacy, feedback systems, interface

design, information quality, consumer informatics,

and security. There is a particular need to

disseminate research on IT design and management

that takes into full consideration the way IT affects

individuals and organizations. IT designers often

lack an understanding of the environments in which

their work will be deployed, particularly in the

multifaceted world of healthcare.

In an ongoing research program, the authors are

looking at the social and organizational informatics

issues related to every stage of diabetes, from the

public health issues, to the diagnosis of the disease,

to the self-care issues that face most diabetes

patients as they live with the disease, to

complications of the disease such as loss of eyesight

or heart or kidney problems, to end-of life issues for

the diabetes patient.

We have chosen pre-diabetes, a syndrome

associated with Type 2 diabetes, as the focus of this

paper. Individuals with pre-diabetes have blood

glucose levels that are higher than normal, but not

high enough to qualify for a diagnosis of diabetes.

The American Diabetes Association (ADA) now

estimates that there are 54 million people in the

United States who have pre-diabetes (American

Diabetes Association, 2007c) We will examine

several information and IT challenges associated

with identifying pre-diabetes to allow informatics

researchers who are unfamiliar with health care to

“witness” the social and organizational factors in the

ebb and flow of information around this syndrome.

To that end, the first part of this paper is

organized in sections, each of which is preceded by

a question. The body of the section then provides

information about the topic, some examples of how

the question has been addressed, and some examples

of current challenges to date. The authors hope that

this format will stimulate informatics researchers to

create innovative research agendas that can provide

ever-improving answers to these critical questions

relating information to pre-diabetes. In the last

portion of the paper, we offer our own suggestions

for new research.

2 PUBLIC HEALTH AND

COMMUNITY INFORMATICS

How do researchers educate and persuade the public

to act on important new information about a syndrome

-- in this case, pre-diabetes, in which higher than

normal glucose levels and insulin resistance are

present but do not qualify for a diagnosis of diabetes?

New information about diabetes is frequently

incorporated into the medical literature. The general

public may read about new medical studies in the

newspaper, hear about them on the evening news or

encounter them on web sites, but the vast majority of

those studies are of interest only to the provider

community and then only as background

information. Occasionally, however, a major shift in

thinking occurs. In 2002, the Department of Health

and Human Services and the ADA issued position

statements to the press on two conditions linked to

an increased risk for developing diabetes. The term

pre-diabetes was used to describe these conditions.

Patients with pre-diabetes have either impaired

fasting glucose (IFG) or impaired glucose tolerance

(IGT) (American Diabetes Association, 2007b).

Research shows that some long term cardiac and

circulatory damage may already be occurring during

pre-diabetes (American Diabetes Association,

2007c). While healthcare providers had known about

IFG and IGT for some time, the results of three

major randomized controlled studies in different

countries with different populations had concluded

HEALTHINF 2008 - International Conference on Health Informatics

at nearly the same time that individuals could

prevent or delay diabetes with changes in diet and

exercise (Narayan, Imperatore, Benjamin, &

Engelgau, 2002). On that basis, the ADA

recommended screening overweight people 45 years

of age or older to detect those with impaired glucose

tolerance or impaired fasting glucose (American

Diabetes Association & National Institute of

Diabetes and Digestive and Kidney Diseases, 2003).

Those with pre-diabetes became candidates for

diabetes prevention interventions.

A risk test for pre-diabetes is available on the

Association’s web site at

http://www.diabetes.org/risk-test.jsp (American

Diabetes Association, 2007a). People with pre-

diabetes are slowly becoming insulin resistant.

Medications exist to reduce insulin resistance, but

more emphasis is put on weight loss, healthy diet,

and exercise, which also reduce insulin resistance

(Diabetes Prevention Research Group, 2002).

The identification of a new condition,

syndrome or infectious agent triggers an effort to

educate the public about (1) the existence of the

condition (2) its symptoms (3) screening tools (4)

treatments, if they exist and (5) prevention, if

prevention is possible. The identification and

“naming” of pre-diabetes signalled a shift from

identifying people with diabetes to identifying

people with pre-diabetes. The public policy

ramifications of such a shift are substantial. Every

time a new syndrome is identified and a

recommendation is made for screening, new costs

are added to the nation’s healthcare bill.

The ADA and the National Institute of Diabetes

and Digestive and Kidney Diseases (NIDDK)

discussed five conditions that should be met before

attempting to prevent a disease. They are (1) that

the disease to be prevented is an important public

health problem and affects a significant population

(2) that the early history of the disease is understood

well enough to measure its progression (3) that safe,

predictable, acceptable tests exist to identify the pre-

disease state (4) that safe and reliable methods exist

to help prevent or delay the disease and (5) that it is

cost effective to find individuals at high risk and

treat them. The ADA and NIDDK argued that all

five conditions had been met by cumulative research

(Diabetes Prevention Research Group, 2002).

National and state public health agencies, along

with diabetes advocacy groups, began to

communicate the shift in emphasis and information

to the public. They employed traditional media

(television, radio and print) and websites to engage

the public in learning about this pre-cursor to

diabetes. The shift was important because it

conveyed hope. Lifestyle changes really do reduce

risk. For example, the Diabetes Prevention Program

study concluded that individuals with pre-diabetes

who lost 5% to 10% of their total body weight and

exercised could lower their risk substantially (58%)

(Diabetes Prevention Research Group, 2002)

3 KNOWLEDGE

DISSEMINATION AND

MANAGEMENT/INFORMATION

ALERTS

How do researchers undertake informing an entire

community of healthcare providers who are already in

practice about a new diagnostic entity and the

appropriate screening and treatment of that entity?

When the discussion about screening for pre-

diabetes intensified, multiple avenues were already

in place to educate providers who routinely came

into contact with diabetic patients. Providers were

asked to screen individuals (1) who are overweight

and at least 45 years of age and (2) who are under 45

and have one of several other risk factors, such as

membership in high risk ethnic groups, high blood

pressure, a close relative with diabetes, and others

factors. Lifestyle recommendations were fairly

simple: increase physical activity and achieve

weight loss.

In the United States, primary care physicians

(usually internal medicine specialists or family

physicians) see the majority of patients before a

diagnosis of diabetes is established. All physicians

have a sizeable information burden, but primary care

physicians bear the additional burden of having to

stay aware of medical research in nearly every area

of medicine since they are the first line

diagnosticians. They need tools with which to

screen, organize, absorb, and implement the

substantial amounts of new medical information

created each year.

Physicians receive information from a variety

of resources, including colleagues, conferences,

medical journals available in print or on the Internet,

online texts and repositories such as UpToDate,

handheld decision support tools such as Epocrates,

web-based decision support tools such as Isabel,

online databases such as PubMed, and alerts from

Federal and state public health agencies. Many

physicians receive information from pharmaceutical

representatives who come to discuss products,

although there is concern about this practice in the

PRE-DIABETES - An Informatics Research Agenda

United States on the presumption that such

information is biased toward increasing sales.

State licensure boards and most professional

societies require physicians to complete a certain

number of mandatory continuing medical education

hours each year. In addition, most medical

specialties require re-certification. For example,

family practitioners recertifying through the

American Board of Family Medicine (ABFM)

interact with online clinical simulations that may

include content about diabetes.

There is often considerable lag time between

the introduction of new information or

recommendations and the subsequent formation of

clinical guidelines, the necessary adaptation of paper

or electronic record systems, and the adoption of

new practice patterns in the office and clinic. While

some physicians see patients in large group practices

or hospital settings with information infrastructures

that support the rapid transmission of information,

others are solo or small group practitioners with

severe time constraints and paper record keeping

systems that are not easily updated.

4 DECISION SUPPORT AND

CLINICAL GUIDELINES

How can new information be reviewed and inserted

into existing information systems to help providers

identify those patients who are at risk for developing

pre-diabetes

With the identification of a new diagnostic entity or

clinical recommendation, existing information

systems must be revised to prompt providers to

screen and treat those patients at risk. Procedures

must exist to vet new clinical information and

determine whether and how it will be integrated into

routine data collection, treatment activity, and

quality measures. As in the case of screening people

who may pre-diabetic, a general consensus about

what should occur emerged after the results of

several large clinical trials became public. In the

United States, how to implement those

recommendations is usually left to individual health

systems and individual physicians.

While all physicians make claim to expertise in

medical care, there will be “experts among experts”

(in this case, those with recognized expertise in

diabetes) who step forward to provide authoritative

guidance in implementing new information. Many

healthcare information systems, both paper and

electronic, include some component of expert

guidance. Clinical advisory committees assemble to

work with technical staff to approve changes for the

paper or electronic health record. These groups may

adopt existing clinical guidelines or develop their

own guidelines. Such guidelines always have cost

implications, so administrators and financial staff

may also be found on advisory committees. The

National Guideline Clearinghouse of the Agency for

Healthcare Research and Quality (AHRQ) provides

a searchable database of evidence-based guidelines

at http://www.guideline.gov/.

After new guidelines and procedures are agreed

upon, the designated experts must educate their

colleagues about new forms or procedures and

persuade them that new behavior is in order. That

often presents a challenge, since practicing

physicians are very busy and their practice patterns

are difficult to change. Large groups can provide

incentives to change by capturing compliance data

and feeding it back to providers. Solo practitioners

may find it easier to change their own behavior, but

face a greater burden of staying up to date on their

own.

5 HEALTH LITERACY AND

TECHNOLOGICAL LITERACY

Patients have different degrees of health literacy and

computer and technological literacy. If digital tools

become important ways to communicate with patient

and prompt them to action, what factors must be

considered in the design and delivery of those health

messages?

Health literacy has been defined in various ways.

Practically speaking, it is the ability of a patient to

take in health information, comprehend it, and take

appropriate action to protect and preserve his or her

health. In 2007, the Joint Commission published a

white paper on improving health literacy in order to

protect patient safety. It recommended raising

awareness across organizations of the impact of

health literacy and English proficiency on patient

safety and emphasizing patient-centered

communication across the entire span of care (Joint

Commission, 2007). The report noted that many

individuals with chronic medical conditions also

have low health literacy. It recommended specific

techniques, such as “teach back” and “show back”

techniques to assess patient understanding; limiting

information provided to two or three important

points at one time; using drawings, models and

devices; and giving patients information about all of

HEALTHINF 2008 - International Conference on Health Informatics

their diagnoses, medications, test result, and plans

for follow-up care. Studies have shown that diabetic

patients with low health literacy were less likely to

achieve good control over their blood sugars and

more likely to have vision impairment (Schillinger et

al., 2002).

Computer literacy or technological literacy is a

topic more often discussed in traditional academic

circles. There are active, ongoing debates in

education about what students need to learn about

computing, technology, and strategies for acquiring

information in the digital world in order to become

informed and effective adults. Providers, insurers,

and hospitals are interested in using digital tools to

communicate with patients because they present

opportunities to target information, reinforce it, and

reduce costs. However, patients have very different

degrees of computer or technological literacy as well

as health literacy. There will be no “one-size-fits-

all” disease information. It is far more likely that

patients’ comfort with technology will need to be

assessed in the same way that their health literacy

will need to be assessed, before they can simply be

referred, for example, to web-based education

materials or cell phone reminder systems.

6 PATIENT, PHARMACY, AND

LABORATORY FEEDBACK

SYSTEMS

How can IT systems develop patient, pharmacy and

laboratory feedback systems that might assist in the

treatment of patients with pre-diabetes?

Healthcare providers may prescribe smoking

cessation, diet, exercise, medications, and laboratory

tests for pre-diabetic patients. However, there is a

significant body of literature on non-adherence to

medical recommendations. Relatively few patients

are successful at making substantive change,

particularly when those changes involve ingrained

habits. In the case of weight loss, adherence to

recommendations can be measured by a decrease in

the patient’s weight, but it is still difficult to

determine if the patient is following a healthy diet,

exercising regularly, and using medication

appropriately.

There is great interest in extending

communication and a sense of connection between

the diabetes provider and the patient with pre-

diabetes or diabetes outside the walls of the exam

room. Web-based tools such as interactive risk

assessments, exercise diaries, and diet planners are

widely available for patients. Virtual health coaches

are being developed to help patients adhere to

medication and exercise recommendations. A few

providers and systems have established two-way

communication through the Internet on password-

protected sites so that risk scores and patients’

exercise and food plans can be integrated into

reporting mechanisms that give feedback to

providers on patients’ actions. This type of

communication has not been universally

implemented for two reasons: (1) concerns about

protecting patient privacy and complying with

Health Insurance Portability and Accountability Act

(HIPAA) regulations and (2) concerns about

overwhelming the provider with information that he

or she will not have time to read. If a physician has

information and doesn’t act upon it, his or her legal

liability may increase.

There is also interest in mobile communication

devices for extending the relationship. Patients and

providers, who move from room to room, are both

mobile. The portability of cell phones and Personal

Digital Assistants (PDAs) offer many advantages.

For example, if the patient is recording diet choices,

he or she may record and transmit them via cell

phone application while at the dinner table rather

than waiting to access a desktop or laptop computer.

The assumption is that such information will be

more accurate since it is reported so close to the

event.

Compliance with medication is a particular

concern. In a recent study of heart attack patients,

researchers were surprised to find that one out of

eight patients quit taking important medications –

aspirin, beta blockers, and statins – within one

month of discharge from the hospital. Those same

patients were three times more likely to die during

the next year than those who adhered to

recommended medications (Ho et al., 2006).

Pharmacy benefits manager Medco Health Solutions

predicts that spending on diabetes therapies will

increase up to 20% each year between 2007 and

2009 (Medco Health Solutions, 2007). One recent

study found that physicians discussed cost,

coverage, or purchase logistics of medications in just

one-third of interviews when prescribing new

medications (Tarn et al., 2006). Many patients are

embarrassed to admit to their physician that they

cannot afford to pay for medication.

Physicians need to know whether patients are

actually filling prescriptions as directed or showing

up for laboratory tests. If the patient is filling

prescriptions at an in-house pharmacy (one owned

by the clinic, hospital, or health plan) that

information may be captured and fed back into the

PRE-DIABETES - An Informatics Research Agenda

record fairly easily. It will not be added to the record

easily if the patient fills the prescription at an

“outside” pharmacy. The physician’s only recourse

is asking the patient directly. Self-report is not the

best way to gather that information, since many

patients have difficulty facing a physician if they

have not complied entirely with his or her

recommendations. At present, the capacity to give

providers feedback on whether a patient actually

filled or refilled a prescription exists, but it exists

with some risk to the patient’s privacy.

It is somewhat easier to know if the patient has

completed a laboratory test. The convention is that

the results are sent directly to the physician. The

patient must ask the physician to interpret the test

results. The fact that a patient actually reported for a

laboratory test is most easily added to the record if

the patient is sent to a laboratory owned by the

clinic, hospital, or health system.

7 INTERFACE DESIGN ISSUES

AND REMINDER SYSTEMS

Can easy-to-use, inexpensive, reliable reminder

systems be devised that will assist patients with a

variety of lifestyles to remember office visits and

medication?

Patients who are pre-diabetic need regular visits to

assess their progress. If the initial treatment

interventions do not produce the desired weight loss

and increase in exercise, other recommendations

may be made. In most cases, results from routine

laboratory tests, which are private medical

information, will stay in the medical record until the

patient’s next visit. If the patient wants the results,

the patient needs to return to the office.

Physician offices employ a number of strategies

for reminding patients about the time of their next

visit. Most patients leave the office with a printed

reminder of the date of their next visit. Some offices

provide a telephone prompt a few days before the

visit, although such calls add to office overhead.

Some offices charge a fee for missed appointments

to motivate patients to keep appointments.

The Veterans Administration and a few private

insurers are beginning to “push” information out to

patients on their appointment times and lab tests

(Ferris, 2007). Some private medical providers and

facilities also see the Internet as a way for patients to

view their information on line. Authentication

technologies will make it easier to assure that only

the patient can see his or her own personal medical

information.

Information may be captured about whether a

patient filled a prescription, but it will still be

difficult for physicians to assess if patients are

actually taking medication or using it as prescribed.

One company has produced a pill bottle that uses

Short Message Service (SMS) to track how often

pills are taken and send a reminder to the patient’s

phone if a dose is missed (www.simpill.com).

8 INFORMATION QUALITY AND

CONSUMER INFORMATICS

What tools can be developed to assure consumers that

they are accessing the highest quality health

information as they interact with the Internet and other

information resources? How can search engine results

lead patients to reputable information? How can

patients avoid “health mythology” propagated by

participatory tools such as chat rooms and blogs that

may transmit information with little basis in fact?

The Internet affords patients with access to a

computer an incredible number of tools with which

to research their risk factors and conditions. The

amount of information can be overwhelming. On a

single day in April 2007, a Google search using the

word “diabetes” returned 92,500,000 “hits.” Yahoo

returned 78,900,000 results. Microsoft’s search

engine, MSN, returned 18,462,447 results.

An increasing number of U.S. citizens research

their medical conditions online. The major search

companies are well aware of that fact. Steve Case,

the founder of AOL, has launched Revolution

Health, a health web site that will coach subscribers

on their health, store their health information, match

them with doctors, and help them with insurance

claims (Freudenheim, 2007). Google introduced a

health information subscription service in 2006

(Modern Healthcare, 2006). Microsoft bought a

health information search engine in 2007 (Lohr,

2007). Most of the major search engines are actively

engaged in a race to produce more relevant, focused

results. Google, Microsoft, and Yahoo all have test

sites that collect and display large amounts of

information in intuitive ways. Some return

definitions first and then categorize results. For the

search term “diabetes,” one search engine grouped

clusters of information into these categories: care,

research, management, control, risk, centers, types,

drugs, and supplies. Video search engine

HEALTHINF 2008 - International Conference on Health Informatics

Blinkx.com retrieved over 14,000 videos with

diabetes content.

Unfortunately, there is no consensus on how to

evaluate the quality of the information cited

(Eysenbach, Powell, Kuss, & Sa, 2002). Online

health information varies in quality; patients are

vulnerable to misinformation and fraud if they are

unable to evaluate the quality of the material

accessed. Information gained through participatory

tools such as chat rooms or blogs may be inaccurate

information, giving patients false hope or diverting

them from evidence based treatment. Websites may

expose them to worthless or even harmful diet pills

and exercise equipment for which unreasonable

claims are made.

Operational definitions of quality are still

needed, although rating tools are beginning to

emerge. The Health on the Net Foundation offers the

HONcode designation for health web sites that

follow its standards of quality. The Foundation has a

policing system that is designed to help developers

monitor their own compliance to the code, as well as

remain responsive to user concerns. The policing

procedures can be initiated by individual site users

or by the Foundation itself.

Reputable organizations try to provide quality

information on the Internet. Some of these include

the American Diabetes Association, The National

Diabetes Educational Program, The National

Diabetes Information Clearinghouse, and the

National Institute of Diabetes and Digestive and

Kidney Diseases.

There is a growing body of research on

information seeking behavior. Researchers are

beginning to build a set of tools and techniques with

which to examine patient interaction with healthcare

materials available on the Internet. Several studies

have shown that online health information has a

positive influence on patients’ ability to cope with

serious illness (Mills & Davidson, 2002; Ziebland et

al., 2004). Access to disease information online has

also been linked to reduced anxiety and increased

perceptions of self-efficacy (Ybarra & Suman,

2006). There is still much to be learned about search

strategies, information retrieval, demographic

differences, and subsequent actions over the course

of a chronic illness.

While information available on the Internet

has helped to equalize the power in physician-patient

relationships, it has two consequences that are less

positive. One is the annoyance some physicians feel

when patients question their judgment and

recommendations. The other is the time that must be

spent evaluating and responding to the patient’s

attempt to gather information and participate in his

or her healthcare.

9 SECURITY AND PRIVACY

How can systems be designed to secure patients’

confidential information? How can stigmatizing

information be kept private so that patients feel they

can confide in their physicians? How can patients be

persuaded to allow their treatment information to be

collected and be assured it will not be used to

penalize them at a later date, for example, by cutting

off care for those with pre-existing conditions?

In the past two years, there have been literally

millions of accidental and intentional breaches of

patient privacy through lost laptops, inadequate

storage procedures, and outright fraud. Some recent

news stories provide examples: hackers accessed

personal data for 14,000 Pentagon employees

through health insurance records (Pulliam, 2006);

the loss of 130,000 Aetna records by Aetna when

backup tapes were stolen in a burglary (Zeller Jr,

2006).

Few incentives exist to encourage insurers,

hospitals, and providers to tighten their security.

Although mandatory notification of data loss and

financial penalties are being considered by several

states, there are few real penalties for compromising

or losing medical information. Further, the Health

Information Portability and Accountability Act

(HIPAA), which was the impetus for spending

millions of dollars to redesign systems to achieve

compliance with governmental privacy directives,

has had little impact. “In the three years since

Americans gained federal protection for their

private medical information (through HIPAA), the

Bush administration has received thousands of

complaints alleging violations yet not imposed a

single civil fine and has prosecuted just two criminal

case”(Stein, 2006).

The Healthcare Information Management and

Systems Society and Phoenix Health Systems

published a survey on HIPAA compliance in the

summer of 2006. The survey noted that only 56% of

providers had implemented the security standards

and that a substantial portion of providers (22%) and

payers (13%) remained non-compliant with the

privacy regulations. The report further suggested

that even those who were compliant had significant

implementation gaps and that there may be a core

group of entities covered by the law that cannot or

will not implement the privacy standards at all

PRE-DIABETES - An Informatics Research Agenda

(Healthcare Information and Management Systems

and Society 2006).

Many people disagree about whether business

or government presents a bigger threat to privacy.

While it might be assumed that government-

sponsored healthcare programs have stricter privacy

standards, when data from millions of U.S. veterans

were contained on a stolen disk in May of 2006, the

VA waited two weeks before reporting the loss.

Several weeks went by before all the details of the

situation came to light (Stout & Zeller Jr., 2006).

Medical privacy is also important because some

diseases are stigmatizing. At different times in

history, different diseases have had greater or lesser

amounts of stigma attached to them. At one time,

cancer was a stigmatizing illness. Some people

thought cancer was contagious and that people who

had it were to be avoided. Others thought death was

inevitable and stopped visiting those afflicted

because it was “too depressing.” Even today,

individuals with lung cancer may be blamed for their

disease on the assumption that they must have been

smokers.

Diabetes has been relatively free of stigma,

although that is starting to change as the association

between obesity and diabetes becomes clearer. Many

people in the United States see the condition of

being overweight or obese as a sign of lack of

discipline or laziness. Corporate wellness programs

are beginning to reward people for losing weight and

maintaining the reduced weight.

Patients with pre-diabetes or diabetes have to

provide information to their physician in order to

receive treatment. Courts in the United States have

guarded doctor-patient privilege as essential to the

greater societal good. Many people find it difficult to

confide in a physician. In order to encourage open

and honest exchanges, patients have been assured

that information about their medical records would

be kept confidential. The assumption is that society

benefits when patients are treated, because the

potential spread of the disease and cost of its

treatment have been kept in check.

There are times when all the information and

power in the relationship resides with the physician.

An example is the treatment of an unconscious

patient in the emergency room. Society accords the

physician the responsibility of gathering information

and making decisions on the patient’s behalf. There

are also situations of shared information and power.

An example is an acute illness during which the

patient consults the physician but is unlikely to

argue or negotiate about the prescribed treatment,

such as a dosage of an antibiotic over a certain

number of days. In pre-diabetes, the power resides

with the patient and the physician is in a consulting

role. The physician, diabetes nurse, or dietician

recommends lifestyle management techniques, but

the patient has to implement them on a daily basis.

Unfortunately, healthcare providers are no

longer able to guarantee privacy when they act for

the unconscious patient, advise the acutely ill

patient, or consult with the chronically ill patient.

The worst case scenario is that the patient’s own

medical data cause his or her insurance company to

drop insurance coverage. Patients who have chronic

illness fear losing their healthcare coverage. Some

stay at jobs they dislike because they would lose

coverage for pre-existing conditions if they changed

jobs and had to obtain new insurance. If self-

employed, they run the risk that their insurance

company declares them “uninsurable” and

terminates their policy. If insured by government

program, they may lose access to the latest

treatments or experimental treatments.

In a very real sense, the information patients

give to their providers for treatment and their

insurance company for reimbursement may well be

used against them. In the United States, the courts do

not compel a defendant to testify against himself, but

healthcare information systems are used to do

exactly that. If patients choose to lie about their

conditions, they also run the risk of losing coverage.

At present, there is no way for healthcare providers

to guarantee that patients will not be penalized for

their honesty in providing information to the medical

record.

Of course, a patient is not required to use his or

her insurance benefits, but most cannot cover the

cost of treating a chronic illness without doing so. If

a patient wants to use insurance benefits, he or she

allow information about the diagnosis to be shared

with the insurance company. The insurer then

decides whether or not to reimburse for care based

on the terms of the policy. Insurance companies

battling rising healthcare costs may use data analysis

to limit access to care. They employ information

systems to control costs and increase profitability.

They review data to forestall unnecessary spending.

Some companies put burdensome procedures in

place, deny care, or insist on lesser care in the time

period before sustained evidence of efficacy can be

added to the medical research. For example, insulin

pumps became available in 1979. They are useful for

some patients, but expensive. Some insurance

companies would not cover them at first; others

required providers to provide written justification of

the need for an insulin pump.

HEALTHINF 2008 - International Conference on Health Informatics

10 CONCLUSIONS

Throughout the United States, medical and nursing

practitioners are rapidly becoming interested in

solving some of the information challenges

described here, as they exist specifically for pre-

diabetes and generally for every other disease and

syndrome. Healthcare professionals are integrating

technology into the everyday delivery of care. As

their familiarity and level of comfort increase, they

will seek IT support for their patients as well.

Clinicians, often led by early adopters of

technology, are commissioning IT applications from

commercial providers and academic research teams

to solve day to day medical problems. The

application developers are often unfamiliar with the

realities of healthcare. These applications tend to be

stand-alone; they rarely generalize well to wider use.

Individual public health, medical and nursing

researchers are seeking major grant funding for large

scale development of IT solutions to healthcare

conundrums. In “Toward an Informatics Research

Agenda: Key People and Organizational Issues,”

Kaplan et al. present a research agenda model that

addresses individual, institutional, trans-

organizational, and transnational concerns, aligning

them with the social science disciplines that may be

brought to bear on their exploration. Those

disciplines include cognitive psychology, social

psychology, sociology, and cultural anthropology

(Kaplan, Brennan, Dowling, Friedman, & Peel,

2001). In this context, and with these observations of

pre-diabetes, in Table 1 we suggest some areas of

productive research.

At present, many healthcare IT solutions fall

short of their intentions because patients and

providers do not respond to those solutions as

anticipated. Social and organizational factors are

often at the core of those unanticipated,

unsatisfactory responses. Money is being spent that

does not result in real human benefit. The emphasis

needs to shift from the construction of specific

technologies to human and organizational behavior

in interaction with those technologies. Informatics

researchers should lead the way toward

incorporating a respect for and expectation of social

science research in IT development.

Table 1: Pre-Diabetes Informatics Research.

Public health and community informatics

• Identify effective tools, such as community dashboards, to educate individuals and communities about pre-

diabetes and the importance of life change styles to reduce the risk of diabetes; develop those tools in ways

that help communities set priorities for spending on such activities as screening.

• Design and fund public health and community information systems that allow data about pre-diabetes to flow

between and among Federal, state, and local agencies, as well as advocacy groups, clinicians, and

individuals.

• Explore and evaluate information gathering patterns in individual communities; design reliable, predictable

information pathways for publicizing new information in the domain of public health.

• Find ways for important public health messages to rise above the “noise” of a media-saturated environment;

develop and place screening tools in the media that healthcare consumers already use, rather than trying to

train them to use new technologies; develop the ability to target individuals with personalized messages about

their specific risk for pre-diabetes.

Knowledge dissemination and management/information alerts

• Identify tools for primary care physicians with which they can effectively screen, organize, absorb, and

implement the substantial amounts of new medical information created each year; consider ways to

effectively manage the information burden placed on busy clinicians.

• Study search strategies and patterns of information seeking in domain experts such as physicians and nurses;

develop knowledge dissemination patterns that fit into the existing work flow rather than disrupting it.

• Identify ways to reduce the lag time between the introduction of new information or recommendations about

pre-diabetes and diabetes, and the subsequent formation of clinical guidelines, the necessary adaptation of

paper or electronic record systems, and the adoption of new practice patterns in the office and clinic.

• When presenting clinicians with new information, assist them with clear information on how to implement

screening and treatment recommendations at the point of care.

PRE-DIABETES - An Informatics Research Agenda

Decision support and clinical guidelines

• Study existing processes for the institutional adoption of new standards of care; develop models for

identifying the social and organizational barriers that slow the implementation of new expert knowledge;

develop systems that will alert organizations and institutions to new evidence-based medical research and

assist them in implementing it, rather than relying solely on practitioners to come into contact with and

absorb that new knowledge on a clinician by clinician basis.

• Identify effective ways to marshal current expert knowledge about diabetes and pre-diabetes, update existing

medical information systems to reflect that knowledge, and provide communication technologies, strategies,

and incentives for busy primary care physicians to pay attention to these recommended changes in practice.

Health literacy and technological literacy

• Identify effective means to test the health literacy and technology literacy of pre-diabetes and diabetes

patients and match them with web sites and other communication means that are suited to their particular

health and technology literacy.

• Develop rubrics for measuring whether best practices in promoting health literacy are being incorporated into

healthcare technologies.

• Understand the ways in which healthcare consumers gather information about their health and the health of

their families, the ways they use technology to support that process, and the thresholds or decision points that

prompt them to take action, such as scheduling an appointment or attempting to change a habit or behavior.

Patient, pharmacy and laboratory feedback systems

• Identify technologies and procedures that will extend communication and a sense of connection between the

diabetes provider and the patient with pre-diabetes or diabetes outside the walls of the exam room. These

might include, for example, web-based tools such as interactive risk assessments, exercise diaries, and diet

planners, virtual health coaches, or two-way communication systems using PDAs between patients and

providers that allow that patient to record and report data and ask questions.

• Design systems to provide feedback to providers about how well patients are adhering to the prescribed

treatment (medications, diet, exercise, further tests or medical consultations); those systems should be

sensitive to patient privacy issues and avoid overwhelming providers with data that does not contribute to

decision-making or increases their legal liability.

• Create and evaluate systems that optimize the capture of patient adherence data even if that data exists across

multiple organizations.

Interface design issues and reminder systems

• Develop and evaluate treatment support systems that “follow” the patient into his or her work and home

environments; patients should be able to choose from among a number of support systems based on their

individual profiles and preferences.

• Design inexpensive, reliable reminder systems that are patient-specific; avoid generic applications that

require the patient to wade through information or reminders that are not specific to his or her situation.

Information quality and consumer informatics

• Develop tools to assure consumers that they are accessing the highest quality health information as they

interact with the Internet and other information resources.

• Develop operational standards of quality of information and tools that allow both website developers and

users to rate the quality of their information on the site.

• Redesign search engines to lead patients to reputable information and away from “health mythology” propagated

by participatory tools such as chat rooms and blogs that may transmit information with little basis in fact.

Security and privacy

• Develop legal, economic, technological, and social means to increase the privacy of patients’ confidential

information; develop technologies and protocols that protect the trust and tradition of the doctor-patient relationship.

• Design systems that ensure that stigmatizing information is kept private so that patients feel they can confide

in their physicians; allow treatment information can be collected without fear it will be used to penalize

patients at a later date, for example, by cutting off care for those with pre-existing conditions.

HEALTHINF 2008 - International Conference on Health Informatics

REFERENCES

American Diabetes Association. (2007a). Diabetes Risk

Test [Electronic Version] from

http://www.diabetes.org/risk-test.jsp.

American Diabetes Association. (2007b). How to Tell If

You Have Pre-Diabetes [Electronic Version] from

http://www.diabetes.org/pre-diabetes/pre-diabetes-

symptoms.jsp.

American Diabetes Association. (2007c). Pre-Diabetes

[Electronic Version]. Retrieved June 14, 2007 from

http://www.diabetes.org/pre-diabetes.jsp.

American Diabetes Association, & National Institute of

Diabetes and Digestive and Kidney Diseases. (2003).

The Prevention or Delay of Type 2 Diabetes. Diabetes

Care, 26 Supplement(1), S62-S69.

Diabetes Prevention Research Group. (2002). Reduction in

the evidence of type 2 diabetes with life-style

intervention or metformin. N Engl J Med, 346(6), 393-

403.

Eysenbach, G., Powell, J., Kuss, O., & Sa, E. (2002).

Empirical studies assessing the quality of health

information for consumers on the World Wide Web: a

systematic review. JAMA: Journal of the American

Medical Association, 287(20), 2691-2700, 2723-2694.

Ferris, N. (2007, January 24). Vets can see EMR data.

Government Health IT News.

Freudenheim, M. (2007, April 17, 2007). AOL Founder

Hopes to Build New Giant Among a Bevy of Health

Care Web Sites. New York Times.

Healthcare Information and Management Systems and

Society , P. H. S. (2006). US Healthcare Industry

HIPAA Compliance Survey Results: Summer 2006.

Ho, P. M., Spertus, J. A., Masoudi, F. A., Reid, K. J.,

Peterson, E. D., Magid, D. J., et al. (2006). Impact of

Medication Therapy Discontinuation on Mortality

After Myocardial Infarction. Arch Intern Med,

166(17), 1842-1847.

Joint Commission. (2007). "What Did the Doctor Say?":

Improving Health Literacy to Protect Patient Safety

(White Paper).

Kaplan, B., Brennan, P. F., Dowling, A. F., Friedman, C.

P., & Peel, V. (2001). Toward an Informatics Research

Agenda: Key People and Organizational Issues. J Am

Med Inform Assoc, 8(3), 235-241.

Lohr, S. (2007, February 27, 2007). Microsoft to Buy

Health Information Search Engine. New York Times.

Medco Health Solutions. (2007, May 17). Unmanaged,

diabetes drug costs could surge nearly 70 percent

within three years. Drug Trends Extra.

Mills, M. E., & Davidson, R. (2002). Cancer Patients'

Sources of Information: Use and Quality Issues

Psycho-Oncology, 11, 371–378.

Modern Healthcare. (2006). Google introduces health-info

subscription service [Electronic Version]. Retrieved

May 14.

Narayan, K. M. V. a. p., Imperatore, G. m. e., Benjamin,

S. M. e., & Engelgau, M. M. c. e. a. s. b. (2002).

Targeting people with pre-diabetes: Lifestyle

interventions should also be aimed at people with pre-

diabetes. BMJ, 325(7361), 403-404.

Pulliam, D. (2006, May 1). Hackers access personal

information on TRICARE servers. Government

Executive.

Schillinger, D., Grumbach, K., Piette, J., Wang, F.,

Osmond, D., Daher, C., et al. (2002). Association of

health literacy with diabetes outcomes. JAMA: Journal

of the American Medical Association, 288(4), 475-

482.

Stein, R. (2006, June 5). Medical Privacy Law Nets No

Fines. Washington Post.

Stout, D., & Zeller Jr., T. (2006, March 24). Agency

Delayed Reporting Theft of Veterans' Data. New York

Times.

Tarn, D. M., Paterniti, D. A., Heritage, J., Hays, R. D.,

Kravitz, R. L., & Wenger, N. S. (2006). Physician

communication about the cost and acquisition of

newly prescribed medications. American Journal of

Managed Care, 12(11), 657-664.

Ybarra, M. L., & Suman, M. (2006). Help seeking

behavior and the Internet: A national survey.

International Journal of Medical Informatics, 75(1),

29-41.

Zeller Jr, T. (2006, December 18). An Ominous

Milestone: 100 Million Data Leaks. New York Times.

Ziebland, S., Chapple, A., Dumelow, C., Evans, J.,

Prinjha, S., & Rozmovits, L. (2004). How the internet

affects patients' experience of cancer: a qualitative

study. BMJ, 328(7439), 564.

PRE-DIABETES - An Informatics Research Agenda