Report on National Assessment of Consumer Health Information Demand and Delivery - John Harris, Vice President, Reference Point Foundation

The study was sponsored by the Office of Disease Prevention and Health Promotion, the National Library of Medicine, and the Centers for Disease Control and Prevention. The research was done by Reference Point Foundation. The purpose was to provide a baseline for understanding consumer health information. We began with a review of the literature, held a committee meeting in December, and held focus groups around the country. Finally, we did a small benchmark survey on certain key questions.

The term consumer health information needs definition. It is imprecise and ambiguous; we may think of it as patient information, but that can sometimes mean instructions, at other times patient records. In the patient's mind it's anything they need or want in health care access. The true scope of consumer health information is huge and diverse -- broad, personal, and specific needs.

And analysis of MEDLINE revealed that number of topics is quite large: medical instructions, personal data, decision support, health education, health care shopping, non-medical services, alternative medicine, and wellness. Our focus groups were given a list of some ten subjects for them to rank; they were frustrated with those ten, and selected many others. No two focus groups were the same; even within the groups there was tremendous diversity.

We found two predominant interests: quality doctors and treatment options. Problems with the studies included inadequacies in the data: rarely was there a distinction between active and passive consumption, between education and counseling. We don't have a clear understanding of consumer behaviors. We tend to ignore the issue of mental health consumption, and to confuse the issues of sources, media, and authorities.

We must recognize that our state of knowledge has many gaps. We will offer here very tentative general findings.

The first is that supply is huge and delivery is varied. There are at least 40,000 producers of information, through various media. There are more health than business periodicals, and over 1,000 new health books a year. There are 61 national organizations; 28,000 new audiovisual productions. In one year, there are 1.5 billion health encounters, and 5,100 hospitals with health education programs. 9% of all high school credit hours are in health and physical education. There are eight million citations in MEDLINE, but only 2% are meant for lay consumption.

66% of families rate health education as very important. 92% are concerned about diet and exercise. 79% want online access to health information. Most Americans, however, have some unanswered health questions; many say they are not well informed. Roughly 68% have some questions, but whites have fewer questions than blacks, and the disabled have twice as many as the non-disabled.

When consumers have a health problem, they will generally seek out a physician. At any given time, 35% claim they have a mental or physical problem in their household, and 86% attempted to get information. 90% got the information they needed, 86% of the time from a professional. Consumers seek out multiple sources of information: first to a doctor, then to magazines, books, pamphlets, and then friends and relatives.

The problem is what to do with all this information. From our focus members: "You wind up so confused, so you have a lack of trust in doctors in general. Five dentists gave me different answers on a basic question, and I don't know who to trust." "They push you around, and no one wants to tackle the problem."

What the doctor referred to as drowning is what we call the adjudication of information. The problem is too much, too varied information, and they can't figure out what to make of it. Add to that literacy problems, and the new responsibilities for choice and decision, and we have a serious issue in consumer health information.

Of the many surveys, we found 13 common variables: gender, age, etc. Many of these factors affect consumption, but for many we lack data. Future studies must consistently address access to health care.

With respect to age, we know consumption increases. Older consumers like many sources of information; younger consumers more likely to use information technology. Those with chronic conditions and disabilities consumer more, and are more dissatisfied, but there may be no satisfactory answer for chronic condition questions.

Women tend to be better informed, and are more frequently consumers on behalf of others. African-Americans and Hispanics have higher interest and lower usage. This may be caused by distortions from other factors such as income, rather than cultural differences. For Hispanics this may be a matter of English literacy.

The strongest correlation was income and education. This was consistent across all studies and surveys. As education rises, there are better and healthier lifestyles, and more varied and higher quality sources of information.

This created an image for us of the "health poor" versus the "health wealthy." The gap was between the lowest and highest levels of education and income. This applies to availability both of health care, and healthy conditions for living. This may be the greatest challenge we face.

Economically, 25% of the poor did not get consumer health information when had a problem, versus 9% of the wealthy. 32% of poor felt they had poor health care, versus 8% of the wealthy. 26% of the poor believe in home remedies, versus 5% of the wealthy. 34% poor versus 14% wealthy smokes; 55% poor versus 35% of the wealthy get 8 hours of sleep per night. In a surprising reversal, 59% of the poor drink no alcohol, while only 255 of the wealthy.

Consumer health information is driven by the trends of health care that were mentioned earlier: patient responsibility, self care and care for others, and the increased volume of consumer health information, which will drive demand. Networked consumer health information holds promise for timely and better organized consumer health information, but poses the same problems for accessibility, as the poor have less access to Internet, online services, home PCs, cable televisions, and even have the lowest use of public libraries.

To better serve demand, we're going to need to know more about the complexities of consumer health information demand, the role of active versus casual consumption, and the results on behavior of this consumption. We need much better detail on key demographic variables: race, literacy, etc.

It is fitting that the symbol for this conference is the Hand of God reaching for the Hand of Man [from Michaelangelo]; it's a human hand that delivers our health care. Our information is not just teaching, but also caring and coping. No matter how well we develop our network consumer health information, information exchange will always be a human exchange.

Dr. McGinnis:

Thank you, John. Reed Tucson reminded us that we need to revisit the notion of what we're trying to accomplish, and what we're must fundamentally trying to accomplish is to make information available to the consumer; and your study gives us a better understanding of the nature of that audience.

Return to the main page.