Original Paper



Survey of Respondent Use of the Medical Internet and the Impact on the Patient/Physician Relationship


Michael Tobin, M.D., Ph.D.
copyright © 2002, All Rights Reserved






TABLE OF CONTENTS



Abstract [removed] Acknowledgments
Introduction References
Methodology Selected Respondent Comments
Result Highlights Tables
Discussion Demographics
Conclusion


INTRODUCTION


The author, a practicing physician in a New York City hospital, undertook this study to see what effect the Internet might have on people and their health care. He was interested in learning why people use medical websites on the Internet, if they were satisfied with the information they found, how much they trusted it, and how the medical Internet impacted on their relationship with their doctors.

We hypothesized that people are driven to finding medical information on the Internet because of the decreased time doctors are able to spend with them. We thought we would find patient resentment of their doctors to be an important motivating factor for consulting the medical Internet and that people might be substituting medical websites for their doctors. We also hypothesized that the medical information and misinformation on the Internet would lead to further strain in patient-physician interaction.

We wanted to learn about people's privacy concerns, the role they felt the government should play in policing medical websites, and the future they envisioned for the medical Internet.

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METHODOLOGY


The survey was conducted over the Internet in November/December, 2001 by Russell Marketing Research, Inc., an independent research firm based in New York. Russell Marketing Research contributed to the development of the questionnaire, and was responsible for the sampling and recruitment of respondents, dissemination of the study questions via the Internet, and the gathering and tabulation of data.

A total of 2000 randomly selected individuals were contacted and invited to participate in this survey by filling out a questionnaire on a website maintained by Russell Marketing Research. Respondents were members of Survey Sampling, Inc.'s (SSI) Survey Spot Online Panel. Under the administration of Russell Marketing Research, the recruitment was conducted in two phases:

Phase One: SSI recruited online users from over 1,000 online and offline methods, including website registrations, banner ads, mail-in postcards, and telephone. These people are included in what SSI calls their "e-LIT" population. This population currently has about 9 million Internet users.

Phase Two: SSI sent e-mails to the e-LIT population, recruiting them to join the Survey Spot panel. This panel currently represents 260,000 households and over 900,000 individuals. Various demographic and usage data was captured upon registration.

An incentive was offered for completion of the survey. All respondents were entered into a drawing where they could win one of several cash prizes totaling $10,000.

An absolute requirement for entry into the survey was use of the medical Internet. Of the two thousand (2,000) people contacted, 231 completed the questionnaire, a response rate of 11.5%.

Apart from standard demographic inquiries, two types of questions were used in this survey.

The first type was a closed-ended question in which the respondent was asked to indicate his/her level of agreement with a statement by selecting a rating from a 5-point agreement scale. The 5-point agreement scale used in this study was strongly agree, somewhat agree, neither agree nor disagree, disagree somewhat, and strongly disagree.

The other type used was the open-ended question in which the respondent was given the opportunity to express in his/her own words his/her opinion in response to a given question.

Because of the small number of respondents, we have grouped together strongly agree and agree somewhat as "agree" and disagree somewhat and strongly disagree as "disagree" when presenting results. The tables, from which the results are derived, maintain the separate categories.

The margin of error for this survey was +/- 6.9% at the 95% confidence level.

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RESULT HIGHLIGHTS

  1. Respondents were relatively frequent visitors to medical websites. (Table 1)

    • The mean number of respondent visits to medical websites was 4.6 times per month, or slightly more than once a week.

  2. The reason most respondents visited a medical website for the first time was information about illness, pain and medications. (Table 2)

    • 76.2% were researching a specific illness
    • 14.3% were looking for help with chronic pain.
    • _3.0% wanted information about medications.

  3. A majority of respondents were confident in the quality of the information they receive on medical websites. (Table 3)

    • 59.8% were extremely/very confident in the medical Internet.
    • 38.5% were somewhat confident.
    • _1.7% were either not too or not at all confident.

    3a. "Extremely/very confident" respondents reported that the information on medical websites correlated with what they knew or could learn from other sources. (Table 3a)

    Among the "extremely/very confident" respondents,

    • 16.7% found other sources that substantiated the medical information (most frequent response).
    • 14.5% found that it agreed with what their doctors told them.
    • 10.9% believed that the information comes from doctors.
    • _6.5% felt it verified what they already knew.
    • _3.6% were confident because they only visit reputable websites.

    3b. "Somewhat confident" respondents seemed less sure about the medical facts they found on the Internet. (Table 3b)

    Among the "somewhat confident" respondents,

    • 25.8% weren't sure where the medical information came from.
    • 19.1% weren't sure if the medical facts were accurate/valid.
    • 11.2% weren't sure if the medical facts were true.
    • _9.0%% wanted to double-check the information.
    • _4.5% wanted to confirm with their doctor.

  4. The "extremely/very confident" subgroup of respondents appeared to develop a better, more involved relationship with their doctors as a result of the information they gained from medical websites. Because of the small response rate, not all differences reached statistical significance at the 5% level. (Table 4)

    As a result of consulting medical websites, "extremely/very confident" respondents, compared with the "somewhat confident," were more likely to

    • Ask their doctors questions (71.7% vs. 49.4%).
    • Agree that medical information on the Internet is at least as reliable as that provided by doctors (62.3% vs. 18.0%).
    • Agree that the medical Internet often explains things better than their doctors (58.7% vs. 20.2%).
    • Feel more like partners with their doctors regarding their health care (49.3% vs. 22.5%).
    • Question their doctors about diagnoses and recommendations (43.5% vs. 29.2%).
    • Have more faith and trust in their doctors (37.0% vs. 14.6%).
    • Be more selective about the physicians taking care of them (32.6% vs. 15.7%).

    Also, the "extremely/very confident" respondents were more often

    • Female (56.5% vs. 41.6%).
    • Married (62.3% vs. 43.8%).
    • In favor of e-mail for receiving reports (56.5% vs. 44.9%) and being able to communicate with their doctors (79.7% vs. 71.9%) but the differences were not statistically significant at the 5% level.

  5. Respondents tended to visit better known, traditional websites. (Table 5)

    • 84.0%, WebMD.com
    • 19.9%, DrKoop.com
    • 16.5%, Mayoclinic.com
    • 10.4%, Medscape.com

    As a group, respondents were aware of a wide variety of medical websites.

    • In addition to the 14 pre-listed websites offered in the survey, respondents as a group were aware of, or visted, approximately 100 others.

      • Some of the additional names volunteered by 18% of respondents ranged from the well-known and general, such as abcnews.com and cnn.com, to the less-well known and/or more specialized such as aids.ru, edocamerica.com, oxygen.com, obgyn.com, among many others.

    Some less traditional sites were less frequently visited.

    • 19.0%, Prevention.com
    • 13.0%, Mothernature.com
    • _7.8%, Naturesway.com
    • _5.2%, Altmed.net

    Interestingly, some excellent, traditional, but highly specialized websites received relatively few respondent visits.

    • 3.9% visited Pubmed, a website that allows user to search the medical literature.
    • 1.3% visited Oncolink, an award-winning website providing cancer information.

    Some subgroups of respondents were either more likely to have been aware of, or have visited, certain medical websites. (Table 5a)

    • Aware of Pubmed (7.9% vs. 1.7%, males vs. females).
    • Visited the DrKoop website (33.0% vs. 16.1%, households with total income > 50K vs. those with less.)
    • Visited Cancernet
      • Those with negative feelings toward doctors vs. those without, 13.7% vs. 9.8%.
      • Those with current health problems vs. those without, 9.3% vs. 2.4%.
    • Visited Prevention.com
      • "Extremely/very confident" vs. "somewhat confident," 26.1% vs. 9.0%.
      • Age > 50 vs. age < 50, 26.3% vs. 15.2%.
      • Those with current health problems vs. those without, 23.6% vs. 12.0%.

  6. Respondents who visit medical websites do so for information, often about specific diseases or medication. (Table 6)

    • 22.1% were there for information/research.
    • 20.3% sought information about illness/disease.
    • 14.3% were seeking information about medications/treatments.

    Only a minority of respondents were using the medical Internet to find out how to achieve a healthy lifestyle or to find out about medical aspects of chemical and biological terrorism. (Table 6a)

    • 54.5%, Use the Internet to learn about a specific disease rather than how to achieve a healthy lifestyle.
    • _9.1%, Use medical websites to find out information about chemical and biological weapons and treatment for them.

  7. Respondents liked medical websites that gave them the information they were looking for. They also liked sites that were easy to use. (Table 7)

    Respondents liked medical websites that,

    • 13.9%, were informative; had good information.
    • 10.0%, were easy to use; convenient.
    • _8.7%, were easy to find information on a condition.
    • _7.8%, were easy to understand.
    • _7.4%, were detailed and thorough.
    • _6.5%, provided links to other websites.

  8. Almost half of the respondents found nothing to dislike about the medical websites they visited. (Table 8)

    When asked what they disliked about the medical Internet,

    • 48.5%, had no complaints.
    • _9.5%, cited not enough information.
    • _4.8%, complained of too lengthy/too much information.
    • _8.7%, did not know/no answer.

  9. Some respondents cited negative feelings about doctors as reasons for visiting medical websites. For example, 26% mentioned dissatisfaction with managed care as a motivating factor. (Table 9)

    Some negative reasons for visiting medical websites included,

    • 26.0%, dissatisfaction with managed care.
    • 21.2%, bad experiences of friends or families with doctors.
    • 20.3%, doctors who could not or would not spend time with them.
    • 17.8%, a desire to check up or replace their current doctors.

  10. Visiting medical websites had a positive effect on many respondents' subsequent behavior. (Table 10)

    Encouragingly, after visiting medical websites,

    • 62.3% were more likely to ask their doctor questions.
    • 38.5% felt more of a partner with their doctor regarding their health care.
    • 27.7% had more faith and trust in their own doctors.

  11. A relatively small percentage of respondents reported a negative impact of using medical websites on their relationship with their doctors. (Table 11)

    After using medical websites,

    • 37.7% were more likely to question their doctors' diagnoses and recommendations.
    • 26.0% felt that they were more up-to-date than their doctors.
    • 25.5% reported being more selective about the doctors taking care of them.
    • 21.6% were now more likely to use alternative medicine.
    • 20.8% reported now realizing that their doctor was not telling them the whole story regarding their health.

  12. Many respondents felt that medical websites often do a better job of explaining things than their doctors and are just as trustworthy. (Table 12)

    • 44.2% felt that medical information on the Internet was at least as trustworthy as that provided by their doctors.
    • 43.3% felt that medical websites often explain things better than their own doctor. Only 22.9% disagreed.

  13. Some respondents felt that doctors probably resent not being the exclusive source of medical information. However, most felt that doctors would not be upset with patients who consult the medical Internet. Indeed, some doctors are reported as encouraging their patients to visit medical websites. (Table 13)

    • 64.5% did not feel their doctors would be upset with them for consulting medical websites.
      • Only 4.3% hide their use of medical websites from their doctors.
    • 28.1% reported that their doctor encourages them to consult medical websites.
      • 65.8% felt that their doctors should encourage patients to use the medical Internet.
    • 20.8% thought that doctors want to be the only source of medical information.
    • 14.7% felt that doctors oppose medical information being placed on the Internet while 38.1% disagreed.

  14. Some respondents were concerned about privacy issues. Many see a role for government both in providing medical information and regulating medical websites. (Table 14)

    • 38.1% feel that many medical websites are little more than advertisements for drug companies.
    • 37.7% thought that medical websites are (? should be) legally responsible for their contents.
    • 25.1% expressed concern that medical websites might be maintaining information about them, including specific areas within the website that they visit.
    • 18.6% feel that their visits to medical websites are recorded.

    Respondents would like to see the U.S. Government more involved.

    • 59.3% would like the U.S. Government to make even more medical information available on the Internet.
    • 31.2% believe that the U.S. Government should regulate medical websites more closely.

  15. Respondents see a role for e-mail as a way of connecting them with their health care providers. As a group, they were hesitant about having their medical data stored on the Internet. (Table 15)

    • 76.2% want to communicate with their doctors by e-mail.
    • 70.6% would enjoy receiving reminders for office visits by e-mail.
    • 51.5% would feel comfortable receiving their medical reports via e-mail.

    Respondents were divided over whether they would feel comfortable having their medical information stored on the Internet, even if such information could be made secure from hackers.

    • 42.0% of respondents said they would feel comfortable having their medical information stored on the Internet. 39.4% would not.

  16. Respondents thought that the best thing about the medical Internet was the information it provides and the ease with which it can be accessed. The "anytime/anywhere" availability of information was a definite plus. (Table 16)

    • 10.8%, easy to access information.
    • 10.8%, informative.
    • _6.9%, available anytime/anywhere.
    • _3.9%, easy to use/convenient.

  17. Respondents had no one single response as to the worst feature of the medical Internet. Rather, they demonstrated awareness of multiple potential pitfalls, including self-diagnosis and misdiagnosis. (Table 17)

    • _8.7%, don't know where the information comes from.
    • _7.4%, some users may rely on self-diagnosis rather than doctor.
    • _6.9%, lack of security.
    • _6.1%, inacurate information.
    • _5.6%, potential for hackers.
    • _4.8%, misdiagnosis.

    However,

    • 17.7%, nothing (to criticize).
    • 14.7%, did not know/no answer.

  18. Respondents wanted accurate, up-to-date information on the Internet about diseases and medications. They also wanted to use the Internet to communicate with their doctors. (Table 18)

    • _7.8%, ability to communicate with doctor's office.
    • _4.8%, more information about drugs.
    • _4.3%, place where you can enter your symptoms and get a diagnosis.
    • _3.5%, easier terminology.
    • _3.5%, listing of all possibilities of an ailment.

  19. Female respondents differed from their male counterparts by being more likely to consult the medical Internet because their doctors could not, or would not, spend more time with them. There were other statistically significant differences as well. (Table 19)

    After consulting medical websites, compared with their male counterparts, female respondents were more likely to

    • Ask their doctors questions (70.1% vs. 54.4%).
    • Be "extremely/very" confident about the quality of information on medical websites (66.7% vs. 52.6%).
    • Consult medical websites because their doctor could not, or would not, spend enough time with them (27.4% vs. 13.2%).

    Females were also

    • More health conscious about food (67.5% vs. 51.8%).
    • Less likely to exercise daily (11.1% vs. 21.1%; 8.2 vs. 11.2, mean days exercise/month)

  20. Respondents with health problems serious enough to require a physician's care consulted medical websites more frequently, seeking information about diseases and medications. As a result, they often felt more up-to date than their doctors. Nonetheless, they were more likely to report an increase in faith and trust in their physicians after visiting medical websites than their healthy counterparts. (Table 20)

    Compared with the others, respondents with health problems were more likely to

    • Visit medical websites for information about diseases (53.6% vs. 31.3%).
    • Feel that many medical websites are little more than advertisements for drug companies (43.6% vs. 30.1%).
    • Have more faith and trust in their doctor since using the medical Internet (33.6% vs. 20.5%).
    • Feel more up-to-date than their doctors because of the medical information they have learned on the Internet (31.4% vs. 18.1%).
    • Agree that bad experiences with doctors have been a motivating factor in becoming interested in the medical Internet (25.7% vs. 12.0%).
    • Visit medical websites for information about medications (19.3% vs. 8.4%).

    Respondents with health problems,

    • Visit medical websites at least weekly, but not daily (26.4% vs. 8.4%; 5.5 vs. 2.9 mean days/month).
    • More likely to be health conscious about food (65.7% vs. 50.6%).
    • More likely to be married (60.7% vs. 47.0%).
    • More likely to be 50 years old or older (82.5% vs. 49.0%).
    • More likely for total household income to be less than $30,000/yr (30.7% vs. 18.1%).

  21. Respondents with negative feelings about doctors visited medical websites more frequently and were strong advocates of the medical Internet. After using the medical Internet, negative respondents were even more critical of their doctors and more likely to use alternative medicine. They were also more likely to be smokers (41.2% vs. 22.9%). (Table 21)

    After using medical websites, compared with the others, respondents with negative feelings toward physicians were more likely to

    • Visit medical websites more frequently (6.7 vs. 3.8 mean days/month).
    • Question their doctors' diagnoses and recommendations (72.5% vs. 23.7%).
    • Agree that medical websites often explain things better than their doctors (68.6% vs. 35.1%).
    • Realize that their doctors do not tell them the whole story regarding their health (62.7% vs. 8.4%).
    • Feel more up-to-date than their doctors (60.8% vs. 14.5%).
    • Feel more comfortable asking medical questions on Internet vs. in person with doctor (56.9% vs. 23.7%).
    • Be more selective about the doctor caring for them (47.1% vs. 16.8%).
    • More likely to use alternative medicine (45.1% vs. 14.5%).

    *************************************

    The subgroup of respondents with negative feelings was defined by agreeing strongly or agreeing somewhat with one or more of the following statements while never disagreeing with any of them. Respondents without negative feelings did not agree with any of these statements.

    The defining statements for physician negativity were:

    • Negative experiences with managed care have been a motivating factor in my becoming interested in the medical Internet.
    • Bad experiences with doctors have been a motivating factor in my becoming interested in the medical Internet.
    • I visit medical websites because the doctor could not, or would not, spend enough time with me.

  22. Some respondents were more likely to visit medical websites more often than others. Frequent visitors included those who were currently suffering health problems serious enough to be under the care of a physician or healer, those who expressed negative feelings regarding physicians or the health care system, and those who were "extremely/very confident" of the quality of information on the medical Internet. (Table 22)

    Frequent users of medical websites included

    • Those with negative feelings toward physicians or the health care system, as defined in Question 20, compared with those without (6.7 vs. 3.8 mean days/month viewing medical websites).
    • Those who were "extremely/very confident" of the quality of information on the medical Internet vs. those "somewhat" confident (5.8 vs. 2.9 mean days/month viewing medical websites).
    • Those with current health problems compared with those without (5.5 vs. 2.9 mean days/month viewing medical websites).

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DISCUSSION

Health care has undergone nothing less than a revolution in the last decade. For patients, this has meant a rationing of health care and restricted access to specialized treatment. For doctors, this has meant managed care with loss of meaningful control of patient care, capitated payments, and endless forms. Loss of physician prestige is typified by the apocryphal patient who, feeling fully equal to the doctor in medical knowledge, appears at the office with diagnosis in hand and demands a specific treatment or he will sue. In the past, such a patient, when quizzed, might admit that his diagnosis and choice of therapy was offered by family or friends. Now, according to anecdotes of fellow physicians, the source of information is the Internet.

Although there are undoubtedly individuals who fit this behavior pattern just as there are undoubtedly those who view their doctor as Hippocrates, the current survey suggests that most people are consulting medical websites for information relevant to their health care and not to replace or check-up on their doctors. Many saw the information as empowering them, allowing them to be more in control of their health care and, in the final analysis, as improving their interaction with their doctors.

Respondents were relatively frequent visitors to the medical Internet and the more frequent their visits, the more aware they were of the wide variety of websites offering medical information, some quite specialized. In addition to the 14 websites listed in the questionnaire, respondents knew of, or visited, approximately 90 others. When viewing these websites, they sought information about specific illnesses, diseases and/or medications. Only 16% were visiting medical websites because of a desire to achieve a healthier lifestyle.

Of interest were the 14% of respondents who were searching medical websites for help with chronic pain. This would be distressing were it to indicate that physicians are not adequately treating chronic pain, something for which they have been criticized in the past.

Although most respondents cited positive reasons for consulting medical websites, there were 20 to 25% who were motivated by negative factors including negative experiences with managed care, bad experiences with doctors, or the inability or unwillingness of doctors to spend time with them. Respondents with negative feelings about doctors and the health care system became even more negative and estranged from traditional medicine after consulting medical websites. 45% of negative respondents reported becoming more likely to turn to alternative medicine.

Respondents generally felt good about the information they found on medical websites. They also liked websites that provided detailed information and were easy to use. About 60% of respondents were extremely or very confident about the quality of medical information on the Internet. Indeed, 44% of respondents thought that information on medical websites was at least as reliable as that provided by their physicians. In spite of overall satisfaction, at least a few respondents objected to requests for payment for use of certain services or features of medical websites, apparently ignoring the costs of creating and maintaining such sites.

Respondents tended to be confident about information that they could verify in other ways, including by correlating it with what their physicians told them. The reverse also appeared true. Finding on the Internet what their physician told them in person tended to validate the physician.

43% of respondents reported that medical websites often explain things better than their own physicians and 34% reported feeling more comfortable asking medical questions on the Internet. The communication problem between physicians and patients has been documented previously and the present survey suggests persistence of this problem.

Although respondents had many positive things to say about medical websites including their anytime/anywhere availability, they also had concerns about the accuracy as well as the source of the medical information on the Internet.

There were privacy issues as well. About 25% of respondents suspected that medical websites maintain information about them, including specific areas they visit. 38% felt that many websites are little more than advertisements for drug companies. It is not surprising, then, that 31% of respondents believed that the U.S. Government should regulate medical websites more closely and that 59% wanted the U.S. Government to make even more medical information available on the Internet.

Even under the best circumstances, obtaining information from medical websites has inherent dangers. At least some respondents recognized these pitfalls, including the potential for misdiagnosis and relying on self-diagnosis rather than consulting a doctor. Nonetheless, some respondents reported using the medical Internet in lieu of a doctor, at least in some situations.

66% of respondents felt that doctors should encourage their patients to consult medical websites and our survey suggests that there may be reasons why they should. There are several positive behavioral modifications that respondents report occurring as a result of gaining medical knowledge from the Internet. 62% of respondents report being more likely to ask their doctor questions, 39% felt more like a partner with their physicians regarding their health care and 28% had more faith and trust in their doctors after visiting the medical Internet.

Even replies that might be regarded as negative behavioral responses may be positive ones when viewed differently. The 38% who reported becoming more likely to question their doctor's diagnoses and recommendations after visiting medical websites may have become more active participants in their own health care . The 25% of respondents who report becoming more selective about the doctors taking care of them may be demanding a higher practitioner standard of care. Finally, for the 21% of respondents who report now feeling more up-to-date than their physicians, we can only hope that if they are correct, the new information they introduce will spur their physician's desire to increase his/her own fund of knowledge.

Although our respondents were overall strong supporters of the medical Internet, they wanted even more contact with their doctors and suggested e-mail as the way to accomplish it. In the largest area of consensus in this survey, 76% of respondents expressed a desire to communicate with their doctors by e-mail. 71% said that they would enjoy receiving e-mail reminders for office visits and 51% reported that they would feel comfortable receiving their medical reports via e-mail. Individual comments suggest that they also want medical information.

Respondents were divided as to whether they would feel comfortable having their medical information stored on the Internet, even if it could be made safe from hackers. The potential for abuse of such information may just be too great, but we did not pursue this issue further at this time.

With a survey as small as this, it was gratifying to find many statistically meaningful differences in responses between different subgroups of respondents. We were intrigued to find, for example, that females were much more likely than males to be consulting medical websites because their doctor could not, or would not, spend enough time with them. They were also more likely to ask their doctor questions.

Respondents differed from the U.S. population at large in that all had access to computers, the Internet, and had the skills to use the computer and perform Internet searches. Further they all visited medical websites, which was a criterion for inclusion in this survey.

Cumbo et al. estimated that 60% percent of US household have visited medical websites. [1] Gruen suggested that, in 1999, more than 40% of Internet searches were for health-related information.[2] Dakins in 1999 suggested that 60 million patients consulted the Internet. [3]

This does not mean that all individuals in all households with Internet access are equally capable of searching medical websites. Indeed, Licciardone suggested that the ability to acquire health information on the Internet may be limited in those with age > = 60 years, education = < 12 years, and living in rural areas. [4]

Although respondents in our survey were overall strong believers in the quality of medical information on the Internet, several reports question this assumption. For example, Kisely evaluated websites providing information on the chronic fatigue syndrome and concluded that there was a large amount of information on the Internet that was neither balanced nor consistent with evidence-based practice. [5]

In another study, Kunst et al. evaluated commercial and non-commercial medical websites that provide information on COPD (chronic obstructive pulmonary disease) and evaluated their credibility and accuracy. [6] These authors found commercial sites to be of poorer quality, in particular, by not providing information about simple preventative treatments. He concluded by citing the need to be vigilant about information offered on medical websites about COPD. [6]

In still a third study, Impicciatore et al. evaluated websites providing advice for managing fever in children and found that only a few websites provided complete and accurate information. [7]

These and other studies validate respondent fears that medical information on the Internet may not always be accurate and support the approach of many in confirming what they learn with their physician.

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CONCLUSION

Message for Patients

Our study suggests that many visitors to medical websites are patients under medical care. Although a great deal of medical information is readily available on the Internet, not all may be accurate. This concerned many of our respondents who recommended visiting reliable websites and confirming any new information discovered with other sources. The problem with this approach is that it places the burden of deciding which websites are reliable squarely on the patient. The literature suggests that this is a non-trivial task. [8]

Our respondents, especially those most satisfied with the medical Internet, suggested visiting websites sponsored by the government, medical organizations, e.g., American Diabetes Association and medical centers, e.g., the Mayo Clinic and confirming information with doctors, books, magazines, etc. Some respondents reported looking for a doctor's name, references, and/or links to other websites. Others received recommendations about which websites to visit from their doctors.

At least some of our participants warned of using the Internet for self-diagnosis and treatment. Misdiagnosis and failure to seek medical help were seen as potential pitfalls because medical information can be misunderstood. Some respondents cautioned that only a physicians can put medical information into context for an individual patient. There are also issues of privacy and security on the Internet.


Message for Doctors

Doctors are aware that at least some of their patients consult medical websites, but may be unaware of the large number of visitors to such sites and the faith patients put in them. Our survey suggests that patients want our encouragement to use medical websites, our recommendations about which sites to visit, and our insight and perspective about what they have read. Our findings also suggest that people not only use physicians to validate what they find on the Internet but also evaluate us by the degree to which what we say correlates with what they read.

Our survey suggests that many patients, after consulting medical websites, become more satisfied with their doctors and more active in their health care. These are good reasons for encouraging patient use of the medical Internet. However, physicians must also be aware that our study suggests that medical information on the Internet has the potential of making patients with negative feelings toward physicians even more negative. Assessing patients' response to what they find on the Internet would seem important to a population that may be 25% or more of patients using the Internet.

Many participants noted that it was easier to understand explanations from the medical Internet than from their doctors. Some participants claimed they were visiting medical websites because their doctors could not, or would not, spend time with them. Clearly, there are issues that need to be addressed regarding patient-physician communication and/or the time available for listening to patient concerns.

Finally, physicians are being asked by their patients to use e-mail to communicate with them. It is, of course, not clear where the time will come from for what could be a potentially time consuming endeavor. Further, physicians are being asked, if not expected, as a group, to become more involved in presenting and evaluating medical information on the Internet. Because of the time and expense involved, this may be a task more suited for major academic institutions that might act as significant educational resources themselves as well as establish guidelines for commercial sites.


Message for Medical Websites

Clearly, patients are enthusiastic about the potential of the medical Internet but concerned about accuracy on information as well as its timeliness. Medical websites need to share this concern as well. The need for referencing medical information and providing links to even more information has been expressed in this study.

Respondents felt that some websites were little more than advertisements, often for drug companies. This perception leads to mistrust of medical information presented on such sites.

Finally, at least some participants requested greater government supervision of medical websites. Some also felt that medical websites are legally responsible for the information they present. It would behoove medical websites that provide patients with medical information and advice to take these findings into account.

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ACKNOWLEDGMENTS

The author would like to thank Russell Marketing Research, Inc. and, especially, John DeBiasio and Janet Birnholz, for their pro bono work on this project.

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CONFLICTS OF INTEREST

None

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REFERENCES

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Return to Table of Contents


SELECTED RESPONDENT COMMENTS

Annotated Respondent Comments
Verbatim Respondent Comment Author Commentary
Set 1: Main Reason(s) For Visiting Medical Websites (Next Set)
(See Table 6)
I work for an HMO There are as many reasons for visiting medical websites as there are people. However, as this survey has found, the underlying motivation is a question for information. Sometimes the information is about diseases and sometimes about the drugs and therapies used to treat them.

Respondents did not seem to be at odds with their doctors. They wanted to understand what their doctor told them and, in many cases, go beyond the explanations they were given. Many wanted to find out the latest news about their ailments and treatments. Some respondents, did, however, want to verify what their doctor told them.

Some respondents used the medical Internet as a source for second opinions and even as a guideline for when to go to the doctor. A few used the Internet for self-diagnosis and treatment.

The possible role of medical insurance, or lack thereof, in forcing people to use the medical Internet as their primary physician was not explored in this survey.

Class assignments
I'm a medical assistant
I have diabetes and I wish to have all the information I can get.
I was suffering from chronic menstrual pains, and had exhausted all other resources of information at my disposal.
I just have information in certain things and was taking a class in medical billing.
I had a pain in my toe and wasn't sure what was causing it, but it wasn't bad enough for me to go to the doctor's office. I researched the toe pain and found a way to fix the pain.
To find out some things my Doctor told me, and to better understand them
My granddaughter had been diagnosed with Dyslexia and I wanted to find out all that I could.
To check for current clinical trial; see if any new medications have come out; check out new pain reduction techniques.
To research and find information about illnesses for friends and family. To verify information given to me by my Doctor.
Interested in any new treatments for osteoporosis, hormone therapy, and cholesterol medicine side effects.
Set 2: Feelings About The Quality Of Information on Medical Websites (Next Set/Previous Set)
(See Table 3a/b)
Because some of the sites are not updated and the information could be old and, therefore, no longer accurate. Respondents wrestled with the question of what they could believe within the large amount of medical information available on the Internet.

Some felt that the mere existence of medical information on the Internet was reason enough to believe it, especially if it were presented in a professional way.

Others seemed quite skeptical, claiming, for example, that medical websites are little more than advertisements or that the information they present is biased.

However, the respondents who statistically had the most confidence in the medical Internet were the ones who realized that what they were reading could be inaccurate or out-of-date and took the time and effort to validate it in some other way, such as confirming their findings with their doctors. Some respondents cross-checked the information they found on one website with that presented on others.

Some people tried to ensure that they were getting quality information by visiting only those medical websites run by the U.S. government, major medical centers, e.g., the Mayo Clinic, or established organizations, e.g., American Diabetic Association.

Although respondents did the best they could to ensure they were getting quality, unbiased information, at least some realized that the information might not be applicable to their specific medical situation.

Because everything I research via the web, I double check with my doctor or pharmacist.
Canned answers-I feel they don't want to go out on a limb or commit themselves to protect them from potential lawsuits.
I only visit government-based health sites.
The sites I went to did not overtly suggest any one treatment or drug. So I think it is objective. However, since it is "just information," I can't be sure that it really applies to my specific case.
Because it is still to easy for someone who is not a real medical authority to set up a medical website.
Information is presented in a professional, easy to understand format.
The writer appears to have a lot of info and experience along with references.
Gives me a basis to talk to my doctor about.
Because I double-checked the information with my doctor who confirmed it.
It's not a doctor; just internet research.
Many things I have researched have been reported on multiple websites.
I don't know who put the information on the website, unless it is a well-recognized organization. Even then, not all can be trusted.
There are so many opinions about fibromyalgia that I don't really know who to listen to.
The information agreed with information I had read from other sources.
Searching through various medical websites and comparing the information to visits with medical practitioners and other printed materials and phone calls, has confirmed the accuracy of information on medical websites.
Overall, I feel somewhat confident on the sites, on average. I am diabetic and feel very confident with the ADA site. I feel somewhat confident of the others because I don't really know where the information I receive is coming from.
Helped determine condition correctly, did not have to see a doctor.
I use the Mayo Clinic site, and I think [it has] good information.
I feel very confident because I read all the information available on any ailment or condition I may have. All I have investigated has been accurate and agrees with my doctor's diagnoses and seem to be well researched.
Most of the sites that I visit have articles that are written by professionals in the field or by persons diagnosed with whatever I'm researching, so I feel confident that the information is accurate.
I know that many things mentioned in articles can be interpreted in more than one way. They can be slanted to reflect the researcher's results. Material can also be incomplete.
The word of my local doctor seems to me more valid and I can explain my problems in my way and he understands.
The doctors online were real and working out of a familiar hospital at the time of my inquiry. They would not give specifics because they did not have me in front of them but did give excellent advice.
Some websites are merely advertisements.
Some of the content is provided by parties with vested interests.
I did some research on something my doctor said I had and asked him some very specific questions. He reviewed the information I had brought him from the Medical Internet website and told me I had some very good information. He then said how good the website was.
Because websites like PubMed really are true about the information they post.
The information I received fairly well matched what the doctor was telling me. I just wanted someone else to give me a second opinion. I felt more confident having Carpal Tunnel surgery knowing the doctor was telling me the full story.
I had an extremely rare form of cancer and couldn't find information about it anywhere. I work at a hospital and the medical library personnel helped me locate information from the Internet. It confirmed what my doctor in Houston had told me about the cancer.
The information presented was in terms I understood, was the same on each of the sites I visited, and corresponded with what my physician had told me. I appreciate the disclaimer on the websites-no one should attempt to diagnose himself or herself without the aid of a physician!
Normally, the knowledge I gather via the Internet is the same basic knowledge I've read in various health magazines, etc. Personally, I'd rather learn about things on my own than go to an actual doctor. I know there are some things a doctor would know that I may not read elsewhere.
Set 3: What was Liked About Medical Websites (Next Set/Previous Set)
(See Table 7)
It gave me the answers I was looking for and was easy to navigate. Because our respondents were using the Internet to gain medical information, it is not surprising that they appreciated websites that allowed them to find the subject matter they were looking for and which presented it in language they could understand. They appreciated thorough discussions but at the same time did not want to be overwhelmed with non-essential information, whatever that might mean to a given individual. And, of course, they wanted the information to be current and accurate. References supporting the medical information presented were appreciated as well as were links to other informative medical websites.

Respondents also appreciated little niceties that eased their task. Websites with easy navigation, good graphics, minimal advertising, and a print facility were all favored.

Several websites provided physician responses to users' medical questions. Although the medical professionals, of necessity, were only able to provide general answers rather than individual diagnosis, our respondents praised this service when it was available.

Still, the positive response to on-line physicians may indicate the continued need for people to have individual attention and perhaps human understanding. At the very least, our respondents found generic responses frustratingly unhelpful.

Respondents liked that medical websites and the information they contain, are available 24/7 while their doctors are not. A few respondents mentioned the apparent cost-free nature of the medical Internet versus the cost of visiting a doctor, perhaps not fully recognizing the role -- and consequences -- of website advertising and economic considerations and compromises inherent in any commercial enterprise.

Our survey did not explore the role of "chat groups" and their impact on the physician/patient relationship. Clearly, for many of our respondents, it was important to be able to communicate with others having the same medical condition.

I liked the convenience of the website; it was easy to get around. And I was very pleased with the promptness with which an online pharmacist answered my question.
The medical information on the site, as well as links to other sites and group discussions with people suffering from the same illness.
I like the articles written by doctors current in their particular field. I also like seeing what others are doing to cope with a chronic illness and try to find help with regard to new books, etc.
The information provided was easy to access and I could print it out for the person(s) I was trying to find information for. Availability of links to other similar sites/forums/chat groups, etc.
Information was clear and concise, easy to understand.
Simple and easily understandable vocabulary. No doc jargon.
WebMD is the easiest to use and gives you levels of information, quick searches and options, like news and chat groups. I also like the pharmaceutical sites when searching for specific drug information. Prevention is good for information on new treatments, including alternative medicine and fitness. All seem to make it easy to find what you are looking for. I especially like the spell check feature on WebMD, since a lot of times the doctor says a medicine name or condition name and you can only guess at the spelling, this helps those of us who didn't go to med school find what we are looking for.
User friendly, helpful facts, and links to other websites.
The thoroughness of the information I was seeking. The "lay" person type of language used.
It was very easy to understand and helped me to know what to ask the doctor when I went to him and how better to take care of myself.
They gave the most up to date information. Also gave a lot of new research information.
The doctors answered my questions through a direct link.
Set 4: What was Disliked About Medical Websites (Next Set/Previous Set)
(See Table 8)
I think that someone needs to update the information in the site regarding maps to providers. I have tried to use two different maps for providers and they take you well out of the way (distance-wise) and one even took me down a dead end road! Because our respondents view the medical Internet as a source of information, they quite naturally dislike anything that impedes their search or provides them with inaccurate information. Disorganized sites that made information difficult to find were especially criticized.

Many respondents wanted specific answers and, if this means an answer which is specific to an individual, it may be impossible to provide remotely, i.e., without an adequate history, physical examination, laboratory tests, imaging studies, and possible even biopsy. Generic answers may be frustrating but may be all that is appropriate medically and, possibly, legally.

It is relatively straightforward to provide information about a disease and its commonly associated symptoms. However, some respondents wanted to go in the other direction. They wanted to know the diseases associated with a given set of symptoms. Physicians recognize this sometimes monumental task as providing a differential diagnosis from a set of related, but often incomplete and conflicting, set of facts. Indeed, deciding whether the rash on the hand is related to the pain in the knee is not trivial. It is difficult for medical school and residency training to provide this information, much less a website.

As some respondents realized, it is often difficult to find information about rare conditions or uncommon medications because the financial success of many websites, especially commercial ones, depends in one way or another on the number of visitors to the website. There are simply fewer people with Scheurmanns disease than with diabetes or heart disease. Fortunately, there are often small websites maintained as a "labor of love" by a physician or patient but this is not always the case.

Some respondents had concerns about privacy and anonymity when consulting medical websites. Commercial websites are routinely able to collect information about a visitor without his or her knowledge. Any personal information volunteered to gain access to a specific area of a website or provided as part of a purchase is captured as well. Our respondents did not comment on whether or not the websites they visited had an information disclosure policy or, if they had, whether or not they read them.

Finally, it is worth noting that many respondents like the medical Internet precisely as it is and could find no fault with it.

Generic answers.
Some want you to sign in.
Cannot ask a computer follow up questions to my needs and concerns.
I had some difficulty figuring out where I needed to look on the site to find the problem I was looking for. I eventually found an alphabetical list and went through all the possible options until I found toe pain. It took longer that I would have liked and I had to go through many pages of jargon before I found a simple one telling me that I had a corn on my toe and how to treat it. It just wasn't easy to navigate.
If you have a modem, sometimes site is slow to load.
The manner that they have for displaying the information and how to go about looking it up isn't the best in the world unless you are some one that knows a few medical terms.
Inability to find diseases based on a specific set of symptoms.
Could not always get a fast link to them. Other sites put too much medical mumbo jumbo in their explanations.
I am frustrated by my inability to find information on more obscure conditions or situations.
I could have used more complete information on that problem.
Some of them contained too much information.
Some of the information is just not correct. The views are clearly slanted and there are no real helpful articles.
Some of the sites were not very well organized.
Not truthful at all.
Often they don't have any information on newer treatments/drugs. For example, the doctor was using Cervidil on our daughter. A WebMD search produced nothing on this, except chat room information. That means more intensive searching on the whole web and a variety of sites. Also, sometimes you can't find information without knowing the diagnosis, medical term or drug. You have to read through a ton of information to find what you really want to know. An "Ask Jeeves" type of scenario would make it easier.
Sometimes hard to navigate and most did not give specific information about certain specific conditions, instead only covering the more "popular" condition. For example, all listed info about urinary incontinence, but very little info was found on urinary urge/frequency.
Possibility of information being sold to third parties/"Big Brother."
Not enough information, most sites are too brief and don't answer my specific questions.
A few were harder to navigate, some do not differentiate between areas aimed at public and areas aimed at professional, could really confuse lay people with info they really have no way of understanding.
Too much garbage mixed in with the information.
Set 5: What Was Thought Best About The Medical Internet (Next Set/Previous Set)
(See Table 16)
The ability to find out about almost anything you want to know about diseases and treatment options. Respondents were appreciative of the tremendous amount of medical information on the Internet and its constant availability. The Internet was also seen as bringing medical information to the home-bound.

Respondents commented on how medical websites improved their understanding of their ailments and allowed them to participate more fully with their doctors in their own health care.

Respondents feared that their doctors might be too rushed to tell them everything or, for whatever reason, might omit some important information or treatment option. Medical websites were seen as particularly valuable in this scenario providing complete but easily understandable information which could be reviewed and digested at one's own pace. Some respondents realized that even when a physician does offer complete information, it is often difficult for a patient to understand and remember everything all at once.

Our respondents saw the Internet as enhancing their relationship with their doctors, empowering them to ask more meaningful questions of their doctors and providing them the information to choose among treatment options. They saw the Internet as possibly even guiding them as to when to see a doctor. In short, respondents saw the medical Internet as supplementing the information given by their doctors and not as a substitute for their physicians.

That it gives you access to medical information at your finger tips, and would allow you to ask your doctor questions that are information-based as opposed to rumor-based.
Lots of information. Nobody knows everything, but the Net is a place where you can search the collective knowledge of many smart people.
A chance to print information, rather than try to remember what the doctor said, and have it on file or easily accessed.
The majority of information that people can read and digest at their own pace.
I like finding out about medicines that I am taking and always check for things that the doctor may not have told me about reactions, etc.
The medical Internet provides people with easily accessible information that they might not otherwise be able to find when they need it. Also, it is incredibly convenient.
The ability to ask very personal questions from the privacy of your home or office, and getting as frank an answer as possible.
I can go there anytime, instead of waiting to get in to see the doctor.
It helps me to be more in control of my health, and my options.
24-hour access.
That you have many options/articles to choose from.
It gives you advice on whether you need to see a doctor or not or maybe just change something in your lifestyle.
Information about bodily functions, diseases, drugs, etc. can help alleviate the "fear of the unknownš that can over-stress some people who don't get enough clear information from health care professionals.
It is a good tool for medical advice on conditions that do not immediately require a doctor visit. A good tool to use in conjunction with your own doctor.
The most information available that you may never ask about because you are rushed at the doctor. And it's free to visit the website "doctorš.
You don't have to wait for your doctor's nurse to call you back to find out what you want to know and then wait for the message answer to get back to you. You can at least get a general idea of what you need to know from the Internet.
Being able to learn more about a problem before going to the doctor.
It helps you make up your mind whether you think you would like to have surgery or try some alternative method.
For people that can't get out of the house.
It can give some people a better idea about a medical problem they might have.
I can look up information myself, and not rely on my physician to get it from. It is private and I don't have to go to a library to research.
You can get the whole story, not just what your doctor tells you. You can also look for alternative treatments that the doctor might not mention. It gives you a sense of security that all of the right steps are being taken or that you can go back to your doctor and ask, "Why didn't you recommend this?" Being informed makes you more active in your care and you don't just have to accept what the doctor tells you as the only way to approach something. In recent years, it seems like doctors almost expect you to diagnose yourself. They don't look beyond the surface, don't follow-up. With information from the Web, I feel that I have a better idea of what is going on and can catch things that my doctor isn't taking the time to look for.
Being able to obtain information has made be more confident with my Doctor and I am better informed about conditions I encounter and feel I can ask intelligent questions.
It can confirm good things about your recovery from your illness; tell you the bottom line about your illness so you can know how to prepare yourself to fight the illness; find a different medical center to go to if there is one available that has doctors who are specialists in your problem. You can make the appointment yourself, get travel info, where to stay, etc.
Better dissemination of medical information to the public.
It provides a very needed service, in that, Doctors are too busy to provide some details that we need.
More information can be had and digested at my leisure, rather than having to try to digest at once the info from my doctor.
The ability for the public to see first hand, new information, in a timely fashion.
I think that it is useful in getting people more involved in their own care.
It gives people a place to look up answers to questions that may be difficult to ask a doctor face-to-face.
Information at your finger tips without having to make a $60 appointment with a doctor.
Set 6: What Was Thought Worst About The Medical Internet (Next Set/Previous Set)
(See Table 17)
Possible inaccuracies due to age of information. Respondents were concerned that the medical information on the Internet might be old, inaccurate or incomplete and that they might be dangerously misled by it. They were concerned that people might use the information on the Internet for self-diagnosis instead of consulting their doctors.

Respondents pointed out that medical information can be frightening and that a doctor is needed to put that information in context. People may misinterpret their symptoms and even imagine symptoms and diseases that they do not have. There was also the concern that patients might find out something unsettling about their medical condition that they might not be able to handle.

In short, respondents felt that although medical websites provide a valuable service in educating patients, not all are trustworthy and, in any case, are no substitute for a physician. Even so, there were at least a few respondents who did use the Internet precisely in this way.

Several respondents resented that some medical websites requested payment for use of some their services or access to some areas of their sites. An even larger number complained of advertisements, especially the pop-up kind. Some complained of the uncaring people on the Internet who would take advantage of the ill by selling them things. Others cited the need for privacy to be maintained; that no one should know that they visit medical websites, why they visit or what they see.

The possibility that information may be published which is not clinically proven.
It gives hypochondriacs a source for more symptoms.
The inability to find ALL information that is available on infectious diseases, medical conditions and their treatment options without needing some sort of clearance to gain access. Worst of all, when they want to charge for information!!
I think the information needs to be protected for security reasons by the AMA.
Possibility that people may rely on it for self-diagnosis and cut out the medical professional completely.
There are those who would try to take advantage of those in need. Anybody can slap together a slick looking website to sell things that don't work. That is why I am wary of sites that sell just one product. I would check with other sources before making the purchase.
I imagine to certain people, it can be scary. Especially to someone who does not like to see the truth and is scared of reality.
The fact that these same people may simply accept the information they get from the Internet as truth and not confirm it with their doctors.
When looking at physical problems, you might think you have one problem, and without the doctor's advice, you might be mistaken about what you have, and not do the proper thing to take care of yourself.
There is a possibility of being provided with false information, which, in regards to treatment and care options, could be very dangerous.
It's unavailable to many elderly people or people who could use the advice.
You may not want to know the answer to the questions you are seeking answers to.
The possibility that some people would not use the information properly.
My secrets might be recorded.
People may tend to rely heavily on information that is not approved by a credible doctor or by a doctor that is familiar with the patient's specific condition. There does not seem to be as much responsibility for the health of individual patients for serious problems.
People may jump to conclusions about symptoms they have; may try to self-diagnose
Not being able to communicate with the source.
Concern that people running a site may be more concerned with selling something than in presenting all sides of the information.
There is no face to face with a person.
Not regulated; misinformation may be present.
False diagnosis.
If medical records were kept online and available to view by the patient, I might be concerned about others obtaining that information without the patient's permission.
The sophomoric quality of much of the information.
Sometimes the basic information isn't detailed enough.
Not everything on the medical Internet is correct. Referencing on the medical Internet is only as good as the site. I think that only over time can you decide if one particular site is more accurate or better than another.
It doesn't really give you all the alternatives to be used and it isn't private from hackers.
Most people do not understand the information they get, and therefore are more likely to take or dispense something that is totally unsafe.
Some people will try to treat themselves, when they should go to a doctor.
Often they post information without updating it. They do not always give the total information about a medication and other uses it may have. Information should always be the latest breakthroughs.
Not knowing what to believe, due to dishonest people trying to play Doctor.
Too much information can be dangerous. It's a bit of a Catch 22. You want to know everything, but "everything" can be frightening. I think you need to use the information in conjunction with the doctor's input and feedback. We read up on some of the treatments the doctor was using on our daughter during her pregnancy and it increased our anxiety knowing that in certain circumstances that could cause severe injury or death to the mother and child. But being able to ask the doctor the specifics made us feel more in control and able to get the answers to the questions. The information from the website has to be put into perspective and you usually need a doctor to do that.
Someone may get information and interpret it in the wrong way. There seems to be many conditions and diseases that have the same or similar symptoms and some people may try to self-diagnose and not see a professional.
It's hard to ask questions and get answers from a computer!
There is too much information on minor conditions.
Information could possibly be taken too seriously. Any illness should be properly diagnosed by a doctor to be treated with the right procedures and medication.
Set 7: What Was Wanted For The Medical Internet (Next Set/Previous Set)
(See Table 18)
Up-to-date, accurate information on medical problems. Complete information, including pictures of pills and medicines. Although many respondents were satisfied with the medical Internet, others wanted "more," especially more detailed information about diseases, drugs, and the doctors caring for them. They also wanted medical websites to be more user-friendly with jargon-free information they could understand. Respondents wanted fewer advertisements, no "pop-up" windows, and more privacy. They wanted more doctor involvement with medical websites more regulated support groups.

A large percentage of our respondents wanted to be able to communicate with their doctors via e-mail and individual comments reflected this. They wanted reports, medical information and advice, prescriptions, and reminders of office visits. They also wanted pharmacies to provide via the Internet lists of their medications along with information about them, including possible side-effects and interactions.

Although one respondent mentioned using video phones on the medical Internet, none of our respondents mentioned the possibility of telemedicine, in which patients could be monitored and, to some extent diagnosed, remotely by their physicians. We did not introduce this topic in our current survey.

Warning sign if any for the public preparedness.
Information on herbal/drug interactions.
More information on endocrinology.
More easily accessed information on cold/flu or infectious disease threats in any given area, based on hospital emergency-room reports and doctors' databases.
Appointments sent to me via e-mail.
More info on ALS and other rare diseases.
Better security and knowledge that you are not being tracked if you look at certain areas.
More sites that are unbiased and review each available treatment and discuss the pros and cons of each.
More info and diagrams.
Up-to-date research-listing ALL the possibilities of an ailment, (not catering to a few loud voices)
I would like to be able to communicate with my doctor's office about certain reports and answers about diagnoses.
I would like to see regular updates on the treatments of specific conditions inquired about from MY doctor. What are his rates of success in treating that condition? What are the alternative methods of treatment?
More holistic approaches to care and treatments.
Ability to input information about medications being taken and have potential interaction problems identified. Have possible alternative treatments identified which could be discussed with the family physician.
Less advertising.
I don't really know I believe that there is a lot of information out there, but it needs to be in a little different type of format so that it would be easier to understand for the average person.
More medical information on how to live a healthier lifestyle in order to pro-actively fend off diseases and illnesses.
A search engine in which you could list symptoms and be given a few suggestions of what the ailment might be, along with a recommendation of whether or not it is serious enough to see the doctor in person.
They cover about everything imaginable; can't think of a thing to add.
An honest to God REAL doctor who would answer your e-mail and give you medical advice that I could be sure would not kill me.
When finding pages on the topics I'm interested in, a more "printer friendly" option would be nice.
Doctors and medicines covered by company insurance.
Simple search engine words for medical conditions instead of medical terms. 2. Local doctors who specialize in the particular area of research. 3. List of office visit prices, insurance accepted and office hours.
Record for kids so I can print them for school, sports, etc., and know if one of them or myself needs a check-up.
I think that using the Internet for medical records would facilitate visits to the doctor. Both the patient and the doctor would be more prepared for the visit.
About what I read now. I use the Internet to learn more about medical conditions, diseases, or treatments and have been satisfied with the information that has been provided.
The opportunity to communicate with my PCP and obtain referrals as needed.
Information directly related to topics that I am searching for without having to go through several pages and NO pop up windows.
Interactive chat with medical providers, like the ask-a-nurse telephone services.
Anything that will minimize office visits.
I definitely would like to be able to ask my doctor questions and to be able to have prescriptions forwarded to me over the Internet.
I would like to see all aspects of a disease or illness; how it's diagnosed; its symptoms; various treatments; expectations as well as alternative treatments and where to find good ones.
Multiple possibilities regarding treatments of illnesses and success rates. ALL doctors' information, i.e., education, credentials, grades/achievements, pending litigation, residencies (all states), probation, if any, patient deaths in their care, misdiagnosis records, etc.
More access to medications and their uses and side effects. Access also to the latest and most update information on different illnesses. That medical sites should keep their sites updated and not leave information there for a long period of time without updating it.
Maybe more information concerning local doctors and their approaches to the care and treatment of their patients, i.e., maybe some comments from their current patients concerning bedside manner, time spent waiting beyond appointment time, etc.
More info that is detailed and in-depth, not this candy coated junk.
Prescription information to track your prescriptions, cost of same, link to drugstore or refill site; patient information for new prescriptions, including side effects, etc.
I would like to see the medical Internet regulated so that non-professional articles are separated from professional articles.
A current PDR, so that you could check out the drugs being prescribed....
I would like to be able to access my medical records.
Ways to get health insurance if you don't have any and your company doesn't provide any.
Regulated support groups.
More doctors becoming involved with it.
Video phone with the medical Internet.
I'm happy with it as it is currently.
Set 8: Additional Comments About The Medical Internet (Previous Set)
Healthy recipe or nutrition-based food ideas. Although our respondents were strong advocates of the Internet, they also recognized its limitations.

Some respondents argued that medical websites, and perhaps medicine itself, should focus more on preventive medicine.

I feel the better informed that we are, the better. You must only use the information as a guide though. It is not a concrete medical diagnosis.
More doctors and/or a list of doctors that one could go to.
I have seen too many generalizations.
I would like to see you advertise to young people to go to med websites for help for fatal and other problems so that they can catch them early and seek a doctor. Sometimes, it's hard for them to talk to someone but they will go on the net for the answer. Maybe it could save a life.
The medical community should be promoting proactive ways to fend off diseases and illnesses. Today, doctors make way too much money on treating diseases and illnesses after they occur instead of focusing on prevention. In ancient China, the doctor did not get paid until the patient became well.
With doctors being so busy I believe the more educated the individual is about their own health the better the doctor can treat them.
I think any mode of information about our health given in a comfortable format will encourage us to be frank and honest with both our questions and answers.
I would like to see information on "normal" body functions, organs, etc-- just for general information--for example, what does the liver do, how does hair grow, things like that.
I strongly agree that anyone putting out a medical "advice" website should be a registered medical professional.
I'd like to see local doctors' information on the Internet without having to pay for it. I'd also like there to be a way to complain about a doctor and have that complaint heard by anyone who chooses to see it.
There needs to be some way of assuring users that the personal information obtained on the site is not stored or passed on to anyone else.
Keep the current format if the drooling morons (80% of the population) need this, but put a link for those of us that would like actual information and I will visit more often.
I would like to see traditional and alternative medicines combining their interests in favor of the interest of patients, i.e., the sick and infirm.
More information on specific drug treatments. I take copaxone for my multiple sclerosis. I would like to know more about the drug and how it works.
Ban drug ads and separate professional and non-professional articles.
It has been very convenient and informative for me. I can research questions I forget to ask my doctor or find questions to ask him.
I like having the option of being informed on issues about my health. Doctors don't have the time or willingness to tell you everything. My mother's doctor (actually the nurse) recently called with the results of a test and said she had high potassium levels. What does that mean? That is all that was said and the doctor was out of town. My mother's upset and has no idea if she is going to fall over dead from this or if it is a minor concern. I was able to go online and find information on this and what immediate steps she could take to reduce it, what food she could or couldn't eat and what might be causing the problem. It was immensely reassuring to her to be able to do something and to me to be able to help. This is why we need good medical Internet.
An "A++" for scientific research medical websites like WebMD or PubMed.
I think more info on questions like, "What should be the normal size of the prostate" and get an answer like 40mm or more, and if it quite larger what would be the next move toward reducing size. Understand that my doctor is the only one I would listen to but I can give some input from the Internet info that I get.
Thank goodness information is available! Please try to keep current info available. Don't publish the "latest study" results unless they are definitive. Too many of my friends get "freaked" by reading results one day that say "DON'T DO THIS" and then "We may have new results that refute the previous" the next!
Confidentiality of sites visited and personal medical info that you share-it should be the highest of confidences, even more than credit card numbers.
I could go forever on this subject. However, the major point I want to say is that medical sites should be geared towards information and not towards selling medications.
A chat room for specific illnesses or operations. Nothing better than hearing different views.
I would like more physicians' credentialing information, i.e., the ability to efficiently and accurately track a physician's history. I would also like to see a physician's survival rates published somewhere.
Most sites are easy to use but should refer you more often to your doctor's advice, noting that it does not replace your doctor's dx or knowledge!
I wish it would be more reliable and doctors would use and monitor it.
It would be wonderful if someone's own doctor could be able to answer their questions overnight without having to wait by the phone for an answer to a non-emergency question.

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TABLES

TABLE 1
Frequency of Visiting Medical Websites.
Frequency Percent Respondents
Every day 1.3%
At least once a week but not every day 19.0%
At least once a month but less than once a week 33.3%
Less than once a month 44.2%
Don't know 2.2%
Mean days/month 4.6
Standard deviation 6.2

Return to Question 1

TABLE 2
First Things That Make Respondents Visit Medical Websites.
(responses 3% or greater)
Reason for Using Medical Websites Percent Respondents
Researching Specific Illness. 76.2%
A desire for wellness/desire to live healthier. 16.0%
Help for chronic pain. 14.3%
Recommendation from friend/relative. 6.5%
Recommendation from doctor. 3.0%
Medications. 3.0%

Return to Question 2

TABLE 3
Confidence Rating On The Quality Of The Medical Information On Medical Websites.
Confidence Level Percent Respondents
Extremely confident 11.7%
Very confident 48.1%
Somewhat confident 38.5%
Not too confident 1.7%
Not at all confident 0.0%

Return to Question 3

TABLE 3a
Respondent comments
Reasons For Being Extremely/Very Confident About Information On Medical Websites.
(responses 4.5% or greater)
Reasons For Being Extremely/Very Confident Percent Respondents
Information agrees with other sources. 16.7%
Said what the doctor told me. 14.5%
Information comes from doctors. 10.9%
Informative/good information. 8.7%
Accurate information. 8.0%
Verified what I already knew. 6.5%
Gave me what I was looking for. 6.5%
Reliable information. 5.8%
Easy to understand. 5.1%

Return to Question 3a

TABLE 3b
Reasons For Being Somewhat Confident About Information On Medical Websites.
(responses 4.5% or greater)
Percent Respondents
Not sure where information came from. 25.8%
Not sure if information is accurate/valid. 19.1%
Not sure if medical facts are true. 11.2%
I have to double check information. 9.0%
Couldn't get the answer/information I was looking for. 7.9%
Information was too general/not specific. 6.7%
Have to confirm with my doctor. 4.5%
No reason 5.6%

Return to Question 3b

TABLE 4
Some Differences Between Extremely/Very Confident And Somewhat Confident Respondents.
(Top-two box summary; results statistically significant at the 5% level)
Agreement Statement Extremely/very confident Somewhat confident
Doctors should encourage patients to use the medical Internet. 81.2% 44.9%
Enjoy doctor reminding me of office visits via e-mail. 76.1% 62.9%
More likely to ask my doctor questions since using the medical Internet. 71.7% 49.4%
The U.S. Government should put even more medical information on the Internet than it already does. 71.0% 42.7%
Medical information on the Internet is at least as trustworthy as that provided by my doctor. 62.3% 18.0%
Medical websites often explain things better than my doctor. 58.7% 20.2%
Feel like more of a partner with my doctor regarding health care since using the medical Internet. 49.3% 22.5%
More likely to question my doctor's diagnoses and recommendations since using the medical Internet. 43.5% 29.2%
Have more faith and trust in doctors since using the medical Internet. 37.0% 14.6%
Doctors encourage my use of the medical Internet. 34.1% 20.2%
Feel more up-to-date than my doctor concerning my medical condition since using the medical Internet. 34.1% 14.6%
More selective about the doctor taking care of me since using the medical Internet. 32.6% 15.7%
More satisfied on how health care is provided in the United States since using the medical Internet. 22.5% 5.6%
Visits to the medical Internet (mean days/month) 5.8 2.9
Female 56.5% 41.6%
Married 62.3% 43.8%

Return to Question 4

TABLE 5
Medical Websites Visited (responses 4.5% or greater)
Website Percent Respondents
WebMD.com 84.0%
DrKoop.com 19.9%
Prevention.com 19.0%
Mayoclinic.com 16.5%
MotherNature.com 13.0%
Medscape.com 10.4%
Naturesway.com 7.8%
Webrx.com 6.5%
Cancernet.org 6.5%
Altmed.net 5.2%
Other medical websites 12.6%

Return to Question 5

TABLE 5a
Differences In Subgroup Awareness and Use of Medical Websites
(statistically significant at the 5% level)
Website Respondent Subgroup Percentage Website Usage
Cancernet Negative opinion about doctors 13.7% vs. 3.8% Visited
Current health problems 9.3% vs. 2.4% Visited
DrKoop Income > 50k 51.3% vs. 27.1% Aware
Income > 50k 33.0% vs. 16.1% Visited
HerbNET Negative opinion about doctors 9.8% vs. 2.3% Aware
Income > 50k 10.3% vs. 2.5% Visited
MayoClinic Female 21.4% vs. 11.4% Visited
MotherNature Income > 50k 37.2% vs. 20.3% Aware
Male 17.5% vs. 8.5% Visited
Prevention.com Age > 50 years 26.3% vs. 15.2% Visited
"Extremely/very confident" 26.1% vs. 9.0% Visited
Current health problems 23.6% vs. 12.0% Visited
Pubmed Males 7.9% vs. 1.7% Aware
Webrx "Somewhat confident" 21.3 vs.10.9% Aware
Other websites not listed "Extremely/very confident" 23.2% vs. 11.2% Aware
Current health problems 22.1% vs. 10.8% Aware
Current health problems 13.6% vs. 4.8% Visited

Return to Question 5a

TABLE 6
Respondent comments
Reasons for Visiting Medical Websites (responses 4.5% or greater)
Percent Respondents
For information/research 22.1%
Information on illness/disease 20.3%
For medication/treatments 14.3%
Curiosity 4.8%

Return to Question 6

TABLE 6a
Specific Uses of the Medical Internet (responses 4.5% or greater)
Agreement Statement Agree Strongly Agree Somewhat Neutral Disagree Somewhat Disagree Strongly
I am more likely to use the Internet to learn about a specific disease rather than how to achieve a healthy lifestyle. 23.4% 31.2% 26.0% 5.2% 14.3%
I am using medical websites to find out information about chemical and biological weapons and treatment for them. 4.3% 4.8% 14.3% 14.3% 62.3%

Return to Question 6a>

TABLE 7
Respondent comments
Anything Liked About Websites Visited (responses 4.5% or greater)
Percent Respondents
Informative/Good information. 13.9%
Easy to use/Convenient. 10.0%
Easy to find information on a condition. 8.7%
Easy to find what you are looking for. 8.2%
Easy to understand. 7.8%
Detailed, through information. 7.4%
Most information was available. 7.4%
Had all the information I needed. 6.9%
Referred to another site/Gave links. 6.5%
Specific information. 4.8%
Easy to read. 4.8%

Return to Question 7

TABLE 8
Respondent comments
Anything Disliked About Websites Visited (responses 4.5% or greater)
Percent Respondents
Nothing/none/no problems 48.5%
Not enough information 9.5%
Too lengthy/Too much information 4.8%
Don't know/no answer 8.7%

Return to Question 8

TABLE 9
Negative Reasons for Visiting Medical Websites
Agreement Statement Agree Strongly Agree Somewhat Neutral Disagree Somewhat Disagree Strongly
My negative experiences with managed care have been a motivating factor in my becoming interested in the medical Internet. 10.4% 15.6% 26.0% 14.7% 33.3%
Bad experiences my family, friends and I have had with doctors have been a motivating factor in my becoming interested in the medical Internet. 9.5% 11.7% 23.8% 15.2% 39.8%
I spend time surfing the medical Internet because my doctor cannot or will not spend enough time with me. 9.5% 10.8% 20.8% 16.9% 42.0%
I am using the medical Internet to check up on my current doctors and to look for new ones. 6.1% 11.7% 22.9% 13.9% 45.5%

Return to Question 9

TABLE 10
Positive Affect Of Medical Internet Usage
Agreement Statement Agree Strongly Agree Somewhat Neutral Disagree Somewhat Disagree Strongly
I am more likely to ask my doctor questions. 24.2% 38.1% 25.1% 6.1% 6.5%
I feel more like a partner with my doctor regarding my health care. 10.4% 28.1% 39.8% 12.6% 9.1%
I have more faith and trust in my doctor. 7.8% 19.9% 56.7% 7.8% 7.8%
I am more satisfied with how health care is provided in the United States. 4.8% 10.8% 49.4% 15.2% 19.9%

Return to Question 10

TABLE 11
Negative Affect Of Medical Internet Usage
Agreement Statement Agree Strongly Agree Somewhat Neutral Disagree Somewhat Disagree Strongly
I am more likely to question my doctor's diagnoses and recommendations. 8.7% 29.0% 35.1% 13.9% 13.4%
I am actually more up-to-date than my doctor concerning my medical conditions. 7.8% 18.2% 31.2% 19.0% 23.8%
I am more selective about the doctor taking care of me. 9.1% 16.5% 41.6% 10.4% 22.5%
I am now more likely to use non-traditional, alternative medicine. 5.6% 16.0% 36.4% 19.0% 22.9%
I realize that my doctor does not tell me the whole story regarding my health. 7.4% 13.4% 33.8% 17.3% 28.1%

Return to Question 11

TABLE 12
Perceived Strengths Of The Medical Internet
Agreement Statement Agree Strongly Agree Somewhat Neutral Disagree Somewhat Disagree Strongly
Medical information on the Internet is at least as trustworthy as that I receive from my doctor. 11.7% 32.5% 35.9% 12.1% 7.8%
The medical Internet often explains things better than my doctor. 14.3% 29.0% 33.8% 11.7% 11.3%

Return to Question 12

TABLE 13
How Doctors Are Perceived As Feeling About Patient Use Of Medical Websites
Agreement Statement Agree Strongly Agree Somewhat Neutral Disagree Somewhat Disagree Strongly
I think doctors should encourage their patients to use the medical Internet. 31.6% 34.2% 27.7% 3.9% 2.6%
My doctor encourages my use of the Internet as a source of medical information. 11.3% 16.9% 61.0% 3.5% 7.4%
Doctors want to be the only source of medical information. 7.4% 13.4% 29.0% 23.8% 26.4%
Doctors oppose medical information being placed on the Internet. 4.8% 10.0% 47.2% 14.7% 23.4%
My doctor would be upset with me if he/she knew I was using the Internet to gain medical information. 1.3% 3.9% 30.3% 16.9% 47.6%
I hide the fact from doctor that I surf the Internet for medical information. 0.4% 3.9% 23.8% 15.2% 56.7%

Return to Question 13

TABLE 14
Respondent Concerns About Medical Websites
Agreement Statement Agree Strongly Agree Somewhat Neutral Disagree Somewhat Disagree Strongly
Many medical websites are little more than advertisements for drug companies. 10.0% 28.1% 41.1% 15.6% 5.2%
Medical websites are legally responsible for the information they present. 19.9% 17.7% 36.8% 8.7% 16.9%
I am concerned that medical websites maintain information about their visitors including specific areas they visit. 7.8% 17.3% 32.5% 19.5% 22.9%
I am concerned that my visits to medical websites are often recorded. 4.8% 13.9% 34.2% 19.9% 27.3%
The U.S. Government should put even more medical information on the Internet. 33.3% 26.0% 29.4% 6.5% 4.8%
The U.S. Government should regulate medical websites more closely. 12.1% 19.0% 34.6% 11.7