1. The Doctor as the Second Opinion and the Internet as the First By: Lisa Neal Gualtieri Health Communication Program Tufts University School of Medicine
2. Introduction The introduction of the Internet to many different domains has dramatically changed how people get the information and services they need. Finance and Travel What about Healthcare?
3. Healthcare, and the Internet Initial use – online support groups Expansion – used to learn about a disease, to determine whether professional medical care is needed, to diagnose, to learn what treatment options exist, and for peer support
4. Poor Health-Literacy Skills Health literacy Problems Searching Online Results – Patients cannot understand or act on medical information whether it be received online, or by doctor visit
5. Problems, Made Worse Poor health literacy compounded and made worse There is reliable health information online, but…
6. Reliable Information Some people start looking for health information at well-known and established sites More then half of health-information seekers reported that their most recent online health-info session affected how they care for themselves or someone else Decisions without the awareness of or feedback from professionals
7. Internet as the First Opinion Internet – convenient, easy to use, reflexive use to diagnose a problem, look up symptoms, and determine what to do Professional medical care becomes the second opinion In some cases, the second opinion, is not even taken into consideration, and many people attempt to solve their health problems on their own In other cases, the first opinion from the internet leads to seeking the second opinion.
8. Communication Frequently neither the patient tells the doctor about their internet provided first opinion, nor does the doctor inquire about it, for a multitude of reasons
9. Consequences Strong Doctor-patient relationship is based on trust, not sharing crucial information about previous research, and concerns, can erode this trust, without the doctor even being aware of it Third opinion following doctor’s visit – confused, immediately go to Internet, again.
10. True Stories Whooping Cough – Mary Ann P. Bat Bite – Diana C. Uterine Cancer – Julie Z.
11. What Can Patients Do To Use the Internet More Effectively? Strive to become empowered healthcare consumers Guidance by their healthcare providers about how to integrate their internet research with their visits
12. What Can Doctors Do? Doctor’s need to acknowledge their patients concerns They can give recommendations Collect information about internet use through surveys and such
13. What Can HCI Professionals Do? Collaborate with the medical community to develop a gold standard for consumer health web site design Ultimately, anyone using a health website is trying to feel better or stay well, the design should address that
14. Conclusions The medical community today fails to acknowledge the extent at which patients do health-related online research. More information is needed about the reasons patients rely heavily on the Internet. Why do they use it for their first opinion? Why do they not disclose to physicians any fears or concerns regarding their online diagnoses? Patients benefit if they are more knowledgeable and have better relationships with their doctors. Doctors benefit if their patients are more knowledgeable and less confrontational or fearful. With 80% or more of American’s of all ages, to say nothing of Internet users in other countries, using the Internet for health, improving healthcare should be a collaborative priority of the medical and human computer interaction communities!
Editor's Notes
The introduction of the Internet to many different domains has dramatically changed how people get the information and services they need.Finance and Travel – The internet provides consumers with the information and services they need so that they do not need to interact with a broker or travel agent.What about Healthcare? Doctor- patient relationship hasn’t been destroyed by the internet, but a distinct shadow system exists largely in parallel with the current healthcare system: the use of the internet by healthcare consumers for diagnosis, education, and support.
84% of American adult internet users, or about 160 million people looked for medical information online in 2007, up from 80% in 2006, according to a 2007 Harris pollAs internet use grows, use of internet for health will probably grow as well.Initial use – online support groups, among people with similar health problemsExpansion – used to learn about a disease, to determine whether professional medical care is needed, to diagnose, to learn what treatment options exist, and for peer support with other people with similar conditions
Health literacy means the skills necessary to understand and use health informationMost patients who engage in searching for online health information do so without sufficient health literacy skills, or even pertinent internet skills, such as locating and evaluating information for credibility and qualityResults – Patients cannot understand or act on medical information whether it be received online, or by doctor visit
Poor health literacy is compounded and made worse by the uneven quality of online information, lack of education or guidance about how to use the internet for health purposes, and the desire for miracle cures and easy solutionsYes, there is reliable health information online, but a lot of information found online is of poor quality, misleading, or dangerousExample – Youtube video that depicts treatment that incorrectly claims to reverse the affect of Alzheimer’s, viewed by thousands of people. Videos, and websites that give out incorrect, or miracle cures, are often misleading potential users, and making the problem worse.
Some people start looking for health information at well-known and established sites, WebMD.com, MayoClinic.com, most people start at google. Has led to common references to Dr. Google, and the comments that “google is the de facto second opinion”People choose links with little guidance, other then their ranking on the results page, people could reach conclusions or act on what they read without the knowledge, experience, objectivity, or health literacy skills to make an informed decisionMore then half of health-information seekers reported that their most recent online health-info session affected how they care for themselves or someone else.They may make decisions without the awareness of or feedback from the very people who can best make accurate diagnoses and guide informed decisions : medical professionals
Internet – convenient, easy to use, reflexive use to diagnose a problem, look up symptoms, and determine what to doProfessional medical care becomes the second opinionIn some cases, the second opinion, is not even taken into consideration, and many people attempt to solve their health problems on their own, visiting a doctor, may cost too much, or take too long, and is almost never as convenient as just spending some time on the web, although it is almost always much more useful.In other cases, the first opinion from the internet leads to seeking the second opinion. Patients may be confused, angry and frustrated from the information, and in many cases, misinformation they find online, that they decide to see a doctor.
Frequently neither the patient tells the doctor about their internet provided first opinion, nor does the doctor inquire about it, for a multitude of reasonsNot wanting to look stupidSeem like a cyberchondriacDoctor’s haven’t been trained to ask patients about their internet research, or to inquire
The consequences of such communication issues are huge aStrong Doctor-patient relationship is based on trust, not sharing crucial information about previous research, and concerns, can erode this trust, without the doctor even being aware of it.Example – if a patient thinks that his or her diagnosis is correct, then hears the doctor say something different, they may become skeptical, and the doctor has no idea what’s going onThird opinion following doctor’s visit – confused, immediately go to internet, again. Not the best idea, because this is going to lead to even more confusion in a lot of cases.
Whooping Cough (child with cough, matched symptoms online, sought treatment, cough was cold, went away, did not voice concerns)Bat Bite (shooed bat out, had bite, checked web, confirmed bat bite, went to emergency room, told the doctors about online research, they treated her, effective communication)Uterine Cancer (obsessive searching, panic, not effective communication, negative, but still bad)
Strive to become empowered healthcare consumers, a term that refers to patients who have effective health-literacy skills, and who use the Internet judiciously and safely. Little training or education is available currently to help people to become empowered healthcare consumers, people develop them through persistence, determination, or need.Patients rarely receive specific guidance on how to use the internet generally or for health specifically, people rarely check quality seals, information about sources, the date material was created and any funding or sponsorship on health web sites. Guidance by their healthcare providers about how to integrate their internet research with their visits, Doctors rarely invite patients to bring web-based information or resources with them to appointments. It would assist patients if they were told whether to bring printouts or questions arising from their research online. Ideally some of this information exchange could occur outside the office visit, but a mechanism is needed for that to happen, many physicians do not even have e-mail contact with patients.
Doctor’s should acknowledge that the majority of their patients go online before the visit, and make it clear to the patient that they can ask about any lingering concerns regarding their diagnosis or treatment. They can recommend internet sites that will save patients time and effort, or educate their patients about how to recognize high-quality health websites.Collect information about internet use, which websites patients use, and what questions their research provoked.
Collaborate with the medical community to develop a gold standard for consumer health web site design. Gold standard web sites need to take into account the context of usage, or the needs of healthcare consumers who seek a diagnosis or answers to their questions.Ultimately, anyone using a health website is trying to feel better or stay well, the design and evaluation of health websites focusing on users experience and context of usage can lead to sites that better meet patients needs regardless of their health-literacy skills and diagnostic or educational needs. Doctors user experience as secondary users must also be considered for health web sites to be successful.Government agencies may be best suited to develop standards and guidelines in collaboration with HCI professionals, because they have the most at stake in improving the healthcare system.The websites themselves should be helping the patient to better use them, aside from symptom checker which recommends contacting a doctor, or going to the emergency room, this type of guidance is almost non-existant.
The medical community today fails to acknowledge the extent at which patients do health-related online research.More information is needed about the reasons patients rely heavily on the Internet. Why do they use it for their first opinion? Why do they not disclose to physicians any fears or concerns regarding their online diagnoses?Patients benefit if they are more knowledgeable and have better relationships with their doctors. Doctors benefit if their patients are more knowledgeable and less confrontational or fearful. With 80% or more of American’s of all ages, to say nothing of Internet users in other countries, using the Internet for health, improving healthcare should be a collaborative priority of the medical and human computer interaction communities!
