Three-quarters of Internet users in the U.S. are going online to answer questions about their health. But with hundreds of thousands of health websites, separating the useful and reliable from the questionable and potentially harmful can be a tough task. We look at how Americans are using online health resources and how they’re changing the doctor-patient relationship.

Guests

  • Dr. Rahul Parikh Pediatrician and writer.
  • Susannah Fox Associate Director, Pew Internet & American Life Project, Pew Research Center.

Comparing Online Symptom Checkers & Their Medical Diagnoses

Do an Internet search for “symptom checker” and the top results are likely to be WebMD, Mayo Clinic and Drugs.com. Health websites like these yield a list of possible diseases and conditions that match at least one of your symptoms selected from a drop-down menu of factors. Though all include disclaimers about the medical advice given and recommend calling 911 if symptoms worsen or persist, the variety of possible diagnoses can vary widely among the websites.

For example, a search for the possible cause of moderate knee joint pain in a 25 to 34-year-old male turns up eight to 28 different results:

WebMD Mayo Clinic Drugs.com
Repetitive Motion Injuries ACL injury Ankylosing spondylitis
Tendinitis Gout Anterior cruciate ligament (ACL) injury
Pseudogout Osteoarthritis Arthritis associated with Inflammatory Bowel Disease
Septic Arthritis Posterior cruciate ligament injury Bursitis
ACL Injury Pseudogout Chondromalacia
Bursitis (Prepatellar) Rheumatoid arthritis Fibromyalgia
Chondromalacia Patella Septic arthritis Fracture
Gout Sprains and strains Gout
Knee – Meniscus Tear   Joint infection, including Lyme disease
Knee Strain   Knee sprain
Lupus   Osteoarthritis
Lyme Disease   Posterior cruciate ligament (PCL) injury
Obesity   Pseudogout
Osteochondritis Dissecans   Psoriatic arthritis
Patellofemoral Pain Syndrome   Reiter’s syndrome
Psoriatic Arthritis   Rheumatoid arthritis
Rheumatic Fever   Spondyloarthropathy
Rheumatoid Arthritis   Tendonitis
Sarcoidosis   Torn meniscus
Sickle Cell Crisis    
Sickle Cell Disease    
Sporotrichosis    
Stress Fractures    
Ulcerative Colitis    
Crohn’s Disease    
Henoch-Schonlein Purpura    
Posterior Cruciate Ligament Injury    
Shingles (Herpes Zoster)  

In another case, trying to diagnosis heart palpitations in a 45 to 54-year-old female can come back with a handful of responses or 17 responses:

WebMD Mayo Clinic Drugs.com
Atrial Fibrillation Atrial fibrillation Sinus tachycardia
Panic Attack Heart arrhythmias Certain types of arrhythmias
Generalized Anxiety Disorder Hyperthyroidism (overactive thyroid)  
Acute Stress Reaction Premature ventricular contractions (PVCs)  
Excessive Caffeine Use    
Heart Rhythm Disorder    
Low Potassium (Hypokalemia)    
Premature Ventricular Contractions (PVCs)    
Mitral Valve Prolapse    
Fibromyalgia    
Aortic Regurgitation    
Atrial Flutter    
Hyperthyroidism    
Supraventricular Tachycardia    
Thyroid Storm    
Vitamin B12 Deficiency    
Pseudohypoparathyroidism  

Ear pain in a child, however, result in more similar diagnoses across the websites:

WebMD Mayo Clinic Drugs.com
Ear Canal Infection Common Cold Common Cold
Earwax Blockage Ear Infection Fluid In Ears
Middle Ear Infection    
Chronic Sinusitis    
Foreign Object In The Ear Canal    
Respiratory Syncytial Virus    
Ruptured Eardrum    
Swimmer’s Ear  

Transcript

  • 12:06:41

    MR. KOJO NNAMDIFrom WAMU 88.5 at American University in Washington, welcome to "The Kojo Nnamdi Show," connecting your neighborhood with the world. It's Tech Tuesday. Imagine you have a bad stomachache and decide to check your symptoms online. One site says you probably have indigestion. No big deal. But another brings up a red flashing box on the screen telling you to head straight for the hospital.

  • 12:07:19

    MR. KOJO NNAMDISo is it an emergency, or should you just take an antacid? A third of American adults are using the Internet for online diagnoses, finding resources on the Web much more convenient than a trip to the doctor since you can access hundreds of thousands of health websites with a click of the mouse. But surfing the medical Web does have its risks. It can mean the patients instead of doctors are the ones trying to decide whether their appendix has burst or their lunch disagreed with them.

  • 12:07:47

    MR. KOJO NNAMDIHere to help us navigate the unregulated world of online health and ask how the Web could make patients smarter and doctors more effective is Susannah Fox. She's an associate director of the Pew Research Center. She studies the intersection of technology and health care. Susannah Fox joins us in studio. Welcome.

  • 12:08:07

    MS. SUSANNAH FOXThank you.

  • 12:08:08

    NNAMDIGood to have you here. And joining us from U.C. Berkeley's journalism school studio is Dr. Rahul Parikh. He is a physician and writer in the San Francisco Bay area. Dr. Parikh, thank you for joining us.

  • 12:08:22

    DR. RAHUL PARIKHHi. Thanks for having me. Good morning, Susannah.

  • 12:08:24

    FOXGood morning.

  • 12:08:25

    NNAMDIWell, it's good morning there. It's good afternoon here.

  • 12:08:28

    PARIKHYes.

  • 12:08:28

    NNAMDIYou can call 800-433-8850 if you like to join the conversation. You can also send email to kojo@wamu.org. You can send us a tweet, @kojoshow, using #TechTuesday or simply go to our website, kojoshow.org, to join the conversation there. How do you find answers to questions about your health? 800-433-8850. Susannah, so three quarters of all Internet users are getting health information online. What are some of the questions they're looking to answer?

  • 12:09:00

    FOXWell, what we see is that people are looking for all kinds of things. The most common questions are looking for something specific just as you described a symptom or a treatment they're considering. What's really interesting to me is that half of all health searches are conducted on behalf of someone else, not even the person with the fingers on the keyboard. And so that shows that health is a very social activity.

  • 12:09:27

    NNAMDIWhen we talk about online health, pages like WebMD and Yahoo Health come to mind. What sites for online tools are we using to find health information?

  • 12:09:37

    FOXIn our latest survey, we asked people where they begin their last search for health information, and what was striking is that it was the same as what we found in the year 2000 that eight out of 10 people looking online for health information start a general search engine. We joke that Dr. Google is the de facto second opinion in the United States. It was then, and it is now.

  • 12:09:59

    NNAMDIWhen last -- when asked to think about the last time they hunted for health information, 77 percent of online health seekers say they begun at a search engine such as Google, Bing or Yahoo.

  • 12:10:11

    FOXYeah.

  • 12:10:12

    NNAMDIThey just start out like we look for everything else.

  • 12:10:14

    FOXRight. Well, a lot of people have learned this behavior because it's worked for them in other areas of life. When people are looking for travel information or restaurants or anything, it turns out that search engines are pretty good at beginning to triage that information.

  • 12:10:30

    NNAMDIRahul, with more patients doing their own medical research on the Web, how has the rise of online health change the way that you and your colleagues practice medicine?

  • 12:10:41

    PARIKHWell, I think Susannah was actually modest by saying Dr. Google is a second opinion. I think in many experiences it's the first opinion. When patients come to see me, parents of patients because I'm a pediatrician, they are often saying I looked it up online, and here's what I think is going on. And I'll often ask them, where did you find that online, and their answer is often they started with Google and went to a website, perhaps a commercial website like WebMD or a university website like, you know, the Mayo Clinic.

  • 12:11:14

    PARIKHAnd they found some stuff. And so what I am doing increasingly -- and I think what most doctors have to get used to doing increasingly -- is managing information that their patients are bringing to them and helping them navigate through it. I think a great story about this is from an old-time colleague of mine who back in the mid-'90s, I think, you know, he was an oncologist, and he had a patient come in with newly diagnosed breast cancer.

  • 12:11:43

    PARIKHAnd she was online early and often and had come up with printouts of many, many pages of information and had very strong opinions about what she thought her treatment plan should be. And this physician sort of scratched his head and said, you know, you seem to be very informed and knowing what you want to do. What is it that you need from me?

  • 12:12:04

    PARIKHAnd the woman replied, well, what I really need you to do, Doctor, is help me sort through this information, figure it out. And I think that's a very telling story about how the relationship between a doctor and a patient has been affected by the Internet. And for the most part -- I think for the most part in a very positive way, although we do tend to remember a lot of the negative stories.

  • 12:12:27

    NNAMDIWell, I was about to get to that. What potential risks do patients run when researching their symptoms online before talking to their doctors?

  • 12:12:36

    PARIKHWell, I think there's a couple of factors at play here. One is the ability of search engines to potentially kind of guide you to the wrong place, and there's no better example in my profession than the discussion about vaccines and autism. Now, a few years ago, if you Googled the word vaccines or Googled the word vaccines and autism, the phrase, you would be taken on the first page of Google results to some very dubious websites, you know, put up and perhaps optimized by anti-vaccine groups to perpetuate the notion that vaccines cause autism and to scare parents into not vaccinating their kids.

  • 12:13:18

    PARIKHIf you were not to go beyond, say, the first 10 or 20 results and go into a more wide search, you might be taken down a very deep rabbit hole, and that rabbit hole would link you to --from one place to the next to the next all perpetuating the notion that vaccines cause autism, which we know they do not. And so there's a little bit of that and plus I think -- so there's a little bit of the traps in search engines and search engine technology.

  • 12:13:46

    PARIKHThere's also I think the issue of health literacy in this country and how that plays out when people are searching for information. And we know from many studies that Americans' understanding of health terms and health terminology and basic health education can often be subpar. And that, of course, plays a big role when you're doing a search, trying to figure out whether, as you said in the beginning of the show, you have appendicitis or just a bad stomach bug.

  • 12:14:11

    NNAMDIHave you ever found yourself in a stalemate with a patient because he or she would not let go of an online diagnosis?

  • 12:14:18

    PARIKHOh, yeah. I mean I think I had a story from a few years ago where a relatively healthy adolescent came to see me with his parent. The parent -- I was very -- it was a very -- a little perplexed by why they were there because it was for a relatively what I thought was a minor problem, but that was sort of a gateway into my office to discuss the parent's theory that this individual teenager had Lyme disease.

  • 12:14:46

    PARIKHAnd she had gone online and printed out rims of information and from a chatroom about Lyme disease and had come to the conclusion that her son needed a very specific test for Lyme disease. And when that came up, I -- this was not a test that I'd routinely order, and it was not a test that was so easy to get. This mom had taken her child to a sort of "special practitioner" whose expertise was Lyme disease diagnosis.

  • 12:15:20

    PARIKHSo we had about an hour-long conversation, which is much longer than usually doctors have time for. We went back and forth. What we agreed to -- I agree to do a little bit more background research into what she had asked of me to do. And when I did that, I realized that essentially what this parent had done is gone to what amounted to I think a very dubious practitioner who had I ordered such a test probably would have come back positive and committed this individual adolescent to some several months of antibiotic therapy for no good reason, which has its own risks.

  • 12:15:57

    PARIKHSo when I got on the phone with this parent later, we came to a stalemate, and we just agree that perhaps it would be better for her to go find a different doctor to seek this test from and to seek a second opinion from. That's probably the most memorable story in my practice so far, but I suspect I could come up with many more.

  • 12:16:18

    NNAMDIYou failed to validate her diagnosis. Susannah, people joke about online symptom checkers leading to a diagnosis of brain cancer when really it's a headache. In fact, it's a theory that you tested yourself.

  • 12:16:32

    FOXI sure did. I was quoted in an article where someone else was quoted saying that if the Internet -- if you search for headache and the Internet returns brain cancer, then question it. And I thought, gosh, let me look online. It's been a while since I've searched for headaches. So I went to every search engine that I could think of and searched for headache and took a picture and put it on Twitter and started crowdsourcing as I like to do on Twitter and got all sorts of people involved in my little project for about half an hour.

  • 12:17:04

    FOXAnd indeed, brain cancer comes up in a couple of searches, just a plain search on headache. So it was really interesting to me to see what the variations are on different websites and with just different search engines.

  • 12:17:16

    NNAMDIDid you actually begin to believe that you had brain cancer?

  • 12:17:19

    NNAMDIOne would hope not. By the way, if you go to our website, kojoshow.org, you'll see that we have posted a comparison of results from different symptom checkers, including knee pain, heart palpitations and ear pain in a chart, so that you can see for yourself. It's a Tech Tuesday conversation on health information online.

  • 12:17:37

    NNAMDIYou can join this conversation by calling us at 800-433-8850. Do you research your symptoms online or consult your health care provider first? Let's know. 800-433-8850 or send email to kojo@wamu.org. Rahul, if a patient is going to go online for information, which sites would you stir them toward and which would you recommend they avoid?

  • 12:18:02

    PARIKHYou know, it would be difficult for me to sort of point out one particular website I love, except perhaps my own...

  • 12:18:09

    PARIKH...which, you know, with my group of physicians out here on the West Coast, we have developed our own set of Internet content that I like to routinely direct members to, my patients to. However, I think that if you were to go to, you know, government websites, I think major universities tend to be reliable. Again, the CDC, the FDA, I think that they have very good neutral, commercially neutral information.

  • 12:18:35

    PARIKHI think that's one of the first things you have to do. One thing I would encourage folks to do who are going to search on the Web is just go to the National Library of Medicine. They actually have some nice tips and, I think, a tutorial that allows people to better understand how to search as a savvy Internet consumer. And I've always been a fan of that site just for some basic information on how to do it.

  • 12:18:58

    PARIKHI think whatever you find if you have questions or concerns as, you know, Susannah brought up the example of headache, it's best to just ask your physician. I really believe that. I think that if you don't feel you have a physician who is going to be open to the discussion about what you found online I think you're practicing -- your physician is probably practicing in a bygone era.

  • 12:19:21

    NNAMDIWe're talking with Rahul Parikh. He is a physician and writer in the San Francisco Bay Area. And Susannah Fox, she's an associate director of the Pew Research Center. She studies the intersection of technology and health care. It's a Tech Tuesday conversation on health information online. Susannah, what are the red flags or, well, green lights that patients should pay attention to when they're seeking out health information online?

  • 12:19:46

    FOXThe Medical Library Association has been my resource on this. And what they talk about is the importance of looking for the source and date of the information that you find online. The problem with that, though, is that the Department of Health and Human Services did a study that looked at how many health websites feature that information, whether they actually disclose the source and date, and it's actually quite a small percentage.

  • 12:20:13

    FOXIt's less than 5 percent of health websites that display all the information quality markers. And so the fact that consumers don't necessarily look every time for the source and date of health information online, they might be forgiven because they can't find it.

  • 12:20:32

    NNAMDIBut you would highly recommend that if they can, that source and date are two important factors that they need to look for.

  • 12:20:39

    FOXWell, I'll say that the Medical Library Association can recommend it 'cause as a researcher, I call myself an Internet geologist because I don't judge what's happening online. I just tell you what is actually happening.

  • 12:20:52

    NNAMDIGot to take a short break. If you have called, stay on the line. We will get to your calls. The number is 800-433-8850. Do you trust a site like WebMD as much as you trust, oh, well, your doctor? 800-433-8850. I'm Kojo Nnamdi.

  • 12:22:44

    NNAMDIWe're discussing health information online on this Tech Tuesday with Dr. Rahul Parikh. He is a physician and writer in the San Francisco Bay Area. And Susannah Fox, she is an associate director of the Pew Research Center, who studies the intersection of technology and health care. The National Network of Libraries of Medicine defines health literacy as the ability to find and appropriately use health information and resources. Starting with you, Rahul Parikh, how do you think technology has and could further improve health literacy?

  • 12:23:21

    PARIKHWell, I think the challenges with health literacy are to find places online resources that speak to the right reading level of the American consumer. And that, I think, Susannah would agree. I would guess she would agree that those are very challenging. I think when it comes to health literacy, it's less about technology and more about the person who's searching and their understanding and also the ability of their physician to explain complexities to them or a health provider to explain complexities to them.

  • 12:23:57

    PARIKHSo for many years, I used to like using some more technical terms. I thought it -- early in practice, I thought it was fairly cool. You know, I was out training. I knew -- I thought I knew a lot, and I would use words like anti-inflammatory or cardiovascular. And what I found was, as I learned more about health literacy, you know, it's better to use the word pain reliever or heart and lungs. And people understand that, appreciate it more.

  • 12:24:26

    NNAMDISusannah, same question.

  • 12:24:28

    FOXWell, there have been studies that show that a majority of health information online is written out in 11th grade reading level. And the average for the American public is a six grade reading level. So that is a challenge. One possibility for where technology can help is that so many people share what they find online with family members or other patients who share their same condition as well as with their doctors.

  • 12:24:57

    FOXYou know, what I've heard people say is that I may not understand what I read online. But I have a niece who's a nursing student who can help me. And we see that in our research. As I said, half of health searches are conducted on behalf of someone else. And in many ways, information is the new chicken soup that people bring to someone who's sick. So it's not just the reading level of the person who's not feeling well. It's the reading level of their whole social network.

  • 12:25:31

    NNAMDIOn to the telephones. We'll start with Rip in Reston, Va. Rip, you're on the air. Go ahead, please.

  • 12:25:38

    RIPHi. Just one anecdote: We had a doctor from our family practice that I took my daughter to and all my family to regularly for quite a while. And my daughter developed some symptoms. And I took her three times over the course of two or three weeks. And every time this doctor tested her for strep, and even though I think it came up negative, he continued to try to treat her for strep.

  • 12:26:04

    RIPShe went on the Internet. She was about 13 at the time, went on the Internet and came back and said, I think have mono. And I just sort of, you know, dismissed that. But the next time I took her, he said, well, let's test her for strep. I said, no, you've tried that. Forget strep. Look at her symptoms and tell me what you think she has. And he said, well, she could have mono, and he tested her for mono, and sure enough, she had mono. So what I learned from that is we needed another doctor.

  • 12:26:36

    NNAMDIWell, I thought that working in collaboration with your doctor after you made that suggestion was one of the ways in which Rahul Parikh feels that it should be approached. Rahul Parikh, what do you say about his decision to change doctors after that?

  • 12:26:52

    PARIKHOh, I certainly think it's his prerogative. I mean, there's probably more to that story in terms of the nature of the interaction than, you know, if the physician, for example, was dismissive in a hurry or seemed to instead of, you know, taking the time to sit down and think about not only the strep issue but what the other possibilities were. Those are things that play into that. In health care...

  • 12:27:14

    NNAMDIOK. Allow me to interrupt you for a second because -- Rip, thank you very much for your call. But I think Marilyn has a remark or question that has to do with dismissive. Here she is, Marilyn in Frederick, Md. Marilyn, you're on the air. Go ahead, please.

  • 12:27:29

    MARILYNThank you very much. And I called after listening to the particular comments from your panel regarding this example of the experience with the patient who felt they have Lyme disease and that all that, you know, transpired with that. And I found their familiar tone that rang through with me. I had quite a similar experience having been diagnosed with Lyme disease, being tested for some other things.

  • 12:28:04

    MARILYNBut what I found with that disease is a great gap in theories of treatment, in theories of existence of chronic Lyme versus acute Lyme. Do we do at western blot, do we not? And just because you used that example, I felt, you know, I became my own best advocate. And I also found myself as many other people do with these difficult to diagnose diseases and such that you get into a very -- it's very frightening. You feel very powerless.

  • 12:28:44

    MARILYNAnd unless you have a physician that really steps forward and says, I'm going to be your partner in this, without some dismissive sort of, you know, tones with that and, hang in there, we'll get through this together. And I never really got that from my primary care physician. And I got, you know, just, let's look in the book and see what to do. And I have since become a much better advocate for myself, so much stronger. Yes, the Internet can cause great confusion, and you can get way off track, and -- but there is a fine line, I think, there.

  • 12:29:23

    NNAMDISusannah Fox.

  • 12:29:25

    FOXWell, something that I wanted to add, Marilyn, is your story of becoming a better advocate. We see that in the research that we do, not just in terms of health but in all sorts of aspects of life where people are able to get up to speed very quickly on the topic to make a better decision, whether it's choosing a school, choosing a car, making a financial decision. And we see it really particularly in terms of health.

  • 12:29:53

    FOXAnd, you know, in a lot of ways, it's really ancient, this instinct that we have to share what we know with other people. And the ability to do that has always been present for people who have something in common. You can always find somebody in your neighborhood who might be suffering from the same stomach bug or who maybe had a baby at the same time that you did.

  • 12:30:14

    FOXBut it's more difficult if you have something rare undiagnosed. And the Internet, therefore, expands your neighborhood to include the whole world, and it speeds it up to bring those conversations closer to home. There are definitely dangers, but what we see is that patients are able to network with each other to get towards more information and then become, indeed, better advocates for themselves in those clinical conversations.

  • 12:30:39

    NNAMDIWhich, I guess, is very admirable, but, Rahul Parikh, the fine line that Marilyn describes is the one that concerns me a little bit because in your situation, you had the parent of a patient who asked you to check for Lyme disease, and what you did, you did test for Lyme disease. Did you not?

  • 12:30:59

    PARIKHNo, I did not in this case. I've made a decision based on clinical judgment, and the nature of the test that this individual has requesting, this parent was requesting, this was not a prudent test to administer because the likelihood of it being falsely positive was fairly high.

  • 12:31:16

    NNAMDIAnd that, I guess, is the thin line. How does one, I guess, distinguish because Marilyn talks about having the kind of relationship with your physician? I guess the bottom line in that relationship, Rahul Parikh, has to be trust on both sides, correct?

  • 12:31:34

    PARIKHIt has to be trust and communication and, I think, humility on certainly the physician's part to listen and understand and empathize. The Internet comes into that when it can help to support and strengthen the information, you know, being exchanged.

  • 12:31:52

    NNAMDIOK. Marilyn, thank you very much for your call. We move on now to John in Arlington, Va. John, you're on the air. Go ahead, please.

  • 12:32:01

    JOHNYeah. Thank you. Good show. I manage a refugee health information network which is a multilingual, multicultural health information resource funded by the National Library of Medicine. And although our materials are available to refugees or persons for whom English is not their principal language, more importantly, I think it's a resource for providers working with refugees.

  • 12:32:28

    JOHNThey can look at trusted health information about a variety of topics in a variety of languages and see that what they're looking at in English is the same document that they're sharing with their client or with their patient. And we found that there's a tremendous and growing need in the U.S. for people for whom English is a second language. And it's not just a literacy issue. It's cultural issue, the importance of pictorial information, video, as well as audio and print.

  • 12:33:02

    NNAMDIOK. Thank you very much for sharing that with us. Care to comment on that, Rahul Parikh?

  • 12:33:09

    PARIKHYou know, diversity in health care remains an incredible challenge, I think, for many of us who are physicians. And part of its language and, of course, there are some basic workarounds for that including using interpreters, but really, it's culture and how you view health and wellness and illness and everything. And I think that as this country has gotten more diverse, we are still, in many ways, playing catch-up with that.

  • 12:33:34

    PARIKHHow do, for example, Latinos and African-Americans, how do they like to get their health information? Do they like to read it? Do they like to watch a video about it? Do they like to get it at church or other community events? I think we have a lot of digging to do on that and to put it into practice, so that when an individual patient comes to the door, we know how to address those things better.

  • 12:33:58

    NNAMDI800-433-8850 is our number, or you can simply send us a tweet, @kojoshow, using the #TechTuesday. Are you a health care provider who's appreciative or frustrated by medical advice online? Susannah, majority of Americans are Internet users, but there are stills groups that can't or don't go online in rural areas in the U.S. For example, one in four adults do not use the Internet. Are these groups at a disadvantage when it comes to being informed about their health?

  • 12:34:26

    FOXWell, when you think about in your own life how information that you found online has improved the choices that you were able to make and open up the world of possibilities to you, that's really when you understand the difference that the Internet can make, and there are pockets of people who remain offline. And the biggest concern among people who look at these groups are that they often say that not only have they never been online, they don't know anyone who goes online.

  • 12:35:02

    FOXAnd so if you're talking about a rural area or you're talking about an immigrant community or you're talking about elders, when we look at older adults, those are the folks who are least likely to have access to the Internet. They don't even really understand what it could mean for them to have access, and they're not interested. Another significant divide is when we look at disability, people who've lost their sight, for example. And, you know, as they say, health is social and technology can be social, but there are still these people who don't have any access.

  • 12:35:41

    NNAMDIWhich is, I think, the question that Kathy in Arlington, Va. is looking for an answer to. Kathy, you're on the air. Go ahead, please.

  • 12:35:49

    KATHYYes. Thank you. I wanted to ask about people who are, you know, have less means and -- or poor who don't have access to the Internet and how they deal with this and getting supplemental information or information to begin with about their health care because many of them don't have access to primary care physicians. They have to be treated through the emergency room or maybe you're on Medicaid and don't get to a doctor in a timely basis.

  • 12:36:20

    NNAMDISusannah has written, "Imagine being a newly-diagnosed patient in a rural area, where you don't have access to all the information and community that many of us take for granted. How would your life be different?" Precisely the question that Kathy raises. Any recommendations?

  • 12:36:35

    FOXWell, the Pew Research Center has a special study going on right now about the impact of libraries on Internet access and really the primacy of libraries in many people's lives especially people, again, who live in rural areas who may not have Internet access except for at a library, people on the lower education, lower income scale. Another trend that we're seeing -- and this is particularly true for young people -- is the idea of cellphone being someone's access point for the Internet.

  • 12:37:08

    FOXThere's the rise of people who are cellphone-only not only in terms of not having a landline phone but who use the Internet over their smartphone or their cellphone. And so it's important when people are designing websites and designing interventions to remember that someone might be looking at it on a very, very small screen. They might be sharing it via text message and making sure that accessibility and universal design are part of the program.

  • 12:37:42

    NNAMDIThank you very much for your call, Kathy. You bring up mobile devices. That allows me to bring in Liber (sp?) in Northwest Washington. Liber, you're on the air. Go ahead, please.

  • 12:37:52

    LIBERThank you. I'm calling because I recently had bunion surgery, and I'd like to recommend an app that was really helpful to me. It's called PatientPilot, and it has links to authoritative medical information, important questions so that you remember to ask things when you get to that all-important doctor's office, and it has interactive checklist so that it'll help you narrow things down for legitimate treatments and possible pitfalls.

  • 12:38:25

    LIBERAnd I also want to say I'm a doctor's daughter, so it really hit me when Dr. Parikh said that if doctors don't go with this new technological advance, they're in a bygone era. And I will just fire any doctor who won't take time for a few questions based on Web info. I've used it to see animations of my surgery. My doctor was great, but I've had some bad experiences, too. And I think doctors need to be better trained to allow patients to say, hey, it's my body. PatientPilot really helped me with that.

  • 12:39:05

    NNAMDII think that Dr. Parikh would agree with you, but I'd like to talk to him a little bit about the question of mobile apps because that's what Liber was talking about. Last year, there were 40,000 medical apps for smartphones and tablets, Rahul, and the FDA is beginning to regulate apps that make medical claims. As a physician, how great a role do you think the government should take in regulating mobile and online medical tools because Liber had a good experience, someone else might not.

  • 12:39:35

    PARIKHWell, I think, you know, there is a trend not just around delivering information on mobile devices. I think the FDA's interest in this is when mobile devices are actually used as medical devices so to make diagnostic decisions. So if a physician is making -- remotely looking at X-rays or CT scans, is the quality of the image accurate enough to make a diagnosis if necessary?

  • 12:40:00

    PARIKHAnd it's those kind of questions where I think the FDA is headed, and I think, yeah, they do have a very important role to play in that because it improves access to health care for patients, but also allows physicians to be accessible in more places than they were before.

  • 12:40:17

    NNAMDIGo ahead, please.

  • 12:40:19

    PARIKHNo, go ahead. I like -- I think that, you know, as Susannah mentioned, mobile is really the new wave of Internet technology. And all of us as physicians and patients are -- I think there are tremendous opportunities there for us.

  • 12:40:36

    NNAMDIWell, only a small portion of smartphone users are actually using this growing number of medical apps on the market. Susannah, why do you think mobile health is an area that still hasn't really developed?

  • 12:40:48

    FOXWe recently did a study where we asked people, first, if they have a cellphone, and then if they have a health app. And what we find is that the uptick has been essentially flat: 2010, 2011, 2012. It's only about one in 10 cellphone owners and one in five smartphone owners who have a health app, even as we see this proliferation of different kinds of apps. And so we dug a little deeper and asked people, if they track any aspect of their health, how do they keep track?

  • 12:41:20

    FOXAnd what we found is that seven in 10 American adults track their weight, diet, exercise routine or health indicator or symptom, which sounds like a lot until you ask the follow-up question: How do you track? Half keep track just in their heads, and I call those the skinny jeans trackers because maybe they just put on their skinny jeans to see if they fit. They have maybe a number in their head that they try and keep near.

  • 12:41:46

    FOXAnd then a third use pencil and paper, and it's particularly true among people who are older, among people who actually have a serious health concern that they need to keep track, like someone with diabetes or hypertension. And, you know, I want to honor that paper is a technology, too. And so if you're a health app developer, your challenge is to attract people who are already finding utility with paper and pencil or keeping track in their head. How can you make something so inviting and useful that they make the switch?

  • 12:42:22

    NNAMDIGot to take a...

  • 12:42:23

    PARIKHIf I could just make a...

  • 12:42:24

    NNAMDIPlease do, Rahul.

  • 12:42:25

    PARIKHSo I think where the sweet spot with mobile is I think there's a philosophical question here, and that is: Is a health app or a health website more like a banking website where you go to conduct transactions with somebody? Or is it more like a knowledge base where you go to look, say, for -- like you search for news, whether sports or other things?

  • 12:42:44

    PARIKHAnd I think the sweet spot with mobile and, increasingly, the Internet is if the app can communicate somehow, allow you to complete a transaction, or it can remind you that you are due for vaccines, you are due for a checkup or your family members are, there's some -- it can be customized in that way. That, I think, has tremendous power, and I think we have a long way to go in most places in this country where that's going to be available.

  • 12:43:08

    NNAMDILiber, thank you very much for your call. We're going to take a short break. When we come back, we continue our conversation on health information online. If you have called, stay on the line. We'll try to get to your calls. The number is 800-433-8850. What health apps or health sites or mobile apps do you find useful? 800-433-8850. I'm Kojo Nnamdi.

  • 12:45:09

    NNAMDIGot a number of tweets in our Tech Tuesday confirmation -- conversation about health info online with Susannah Fox. She's an associate director of the Pew Research Center. She studies the intersection of technology and health care. And Dr. Rahul Parikh is a physician and writer in the San Francisco Bay Area. We're encouraging your calls at 800-433-8850, or you can send us a tweet @kojoshow.

  • 12:45:31

    NNAMDIErin tweets, "Don't forget: Health associations can also be a reputable and trusted source of health info online." CE (sp?) tweets, "Don't forget: Your librarian can help you find reliable sources." Bossy (sp?) tweets, "I use the Internet to inform myself and better define symptoms to let the doctor use this as another tool that helps them understand how I feel." And Trashy (sp?) tweets, "Advice to doctors: Don't use digital devices while meeting patients. It kills interpersonal bedside manner." Does it necessarily kill interpersonal bedside manner, Rahul Parikh?

  • 12:46:07

    PARIKHWell, I use an electronic medical record in my office, and adopting that was quite a big challenge because you do find yourself having to look at the screen. But with some practice and some patience and some good tips from colleagues, a little, you know, social support, we've all gotten better at it. I think if you're using technology in the exam room to educate your patient, to inform them, to share some knowledge, it makes perfectly good sense.

  • 12:46:30

    PARIKHI, you know, Google, use Google Images to show pictures of things that patients have asked me about all the time. So if you're checking your stocks, well, there's a problem.

  • 12:46:39

    NNAMDIWell, Susannah, specific demographics are more likely to go online for medical information. For example, women are more likely than men. Why am I not surprised about that? What do you think encourages or discourages people from looking for answers online?

  • 12:46:56

    FOXPart of it is need. So we see that women are more likely than men, which makes a lot of sense 'cause women are often the gatekeepers for a family in terms of health and health care. We also see that...

  • 12:47:06

    NNAMDIA lot of men live in denial, but that's another story.

  • 12:47:10

    FOXIt's also that the parents are more likely to go online and people in the sandwich generation, people who are caring for their aging parents and caring for young ones still living at home. And it's also -- what's interesting, though, is that there are people who have a higher health need, like people who are living with disability or who are living with chronic conditions, but who are less likely, again, to have access to the Internet, and therefore they could benefit. But they don't have access.

  • 12:47:46

    NNAMDIOn to the telephones. Here is Dawit (sp?) in Washington, D.C. Dawit, your turn.

  • 12:47:52

    DAWITYes. Kojo, it's a wonderful show. I am a clinical pharmacist who actually encountered these patients who diagnose themselves with the Internet-based doctors and then bring me an Internet-based prescription. Their good doctor has just told us about the patient who diagnosed, you know, themselves with the Lyme disease, and I have the same kind of patients. Actually, I had a patient who diagnosed himself with Lyme disease and got a prescription, an Internet-based prescription, and this guy was going to be placed on a long-term antibiotic.

  • 12:48:37

    DAWITThis is the challenge that is for all health care providers, just not -- just only for the physicians. But then, you know, those of us that -- who has to see this patient stay today are also being challenged by the information that's out there. There's no, I mean, no doubt that revolutionized our, you know, our knowledge base and then our practice, but then, you know, the challenge is really there, I think. And I don't know if they have any comment about that.

  • 12:49:11

    NNAMDIRahul Parikh, are you familiar with the challenge that Dawit is describing?

  • 12:49:15

    PARIKHWell, I think so, and I think that there's just a larger point that I think he makes -- and I think Susannah brought it up earlier. Information -- I think she said something about information is sort of the chicken soup. And I would put a slightly different twist on that. Information is essentially data, but knowledge is where the power is. And so to be able to translate that information either into knowledge with a doctor or with other family members or other people who you trust is where it is.

  • 12:49:44

    PARIKHAnd I think that's an important distinction is that you may get information that suggest you have Lyme disease that may take you down an entirely different path and then a deep rabbit hole. But if you are able to find people who you trust to balance that knowledge -- that information off of and turn it into knowledge, you are in a different path perhaps and probably a better, safer, healthier path.

  • 12:50:08

    PARIKHAnd I think just to supplement that is as a physician myself, you know, people expect me to sometimes prescribe medications or to prescribe a lab test or an X-ray. I also would like doctors and patients -- one of the things I'm particularly passionate about is using information in a prescriptive way so to prescribe a website or to prescribe some content on a website, some health education to help patients get that knowledge.

  • 12:50:36

    NNAMDIThank you, Dawit, for your call. Jason writes on our Facebook page, "It sounds like you guys are talking about a condition I heard about called cyberchondria. It's essentially hypochondria that's made much worse by doing online searches of particular symptoms and then coming to the worst possible conclusions. I once took an online survey to determine if I was a hypochondriac.

  • 12:50:57

    NNAMDI"And I scored so high that the site said I was either an extreme hypochondriac, or there was definitely something severely wrong with my health and I should go to the doctor immediately. While I believe the Internet is a powerful tool, I could certainly see how too much information can be a problem for those of us who already have health anxieties." To which you say what, Susannah Fox?

  • 12:51:20

    FOXWell, I would be careful with the term cyberchondriac because I've heard it used to describe anyone who goes online for health information. And I would disagree with that. What we see in our research is that most people use good common sense when it comes to how they approach the health information especially when we look at -- when somebody has a serious health concern. The most likely place they're going to turn for advice is a clinician and that interaction is most likely to happened offline.

  • 12:51:50

    FOXThe Internet plays a supporting role for most people. You know, I think that there, of course, is always going to be people who get very anxious, who are frightened about what they see online. When we've asked questions about how people feel after they've done a health information search, they're much more likely to say they feel reassured or they feel ready to ask a doctor new questions. And it's a small group who say they feel frightened by what they find online.

  • 12:52:20

    NNAMDIHere is Scott in Bethesda, Md. Scott, you're on the air. Go ahead, please.

  • 12:52:24

    SCOTTYeah. I always am listening to this. And I actually worked on a help desk for database used by clinicians. But we ended up -- there's a lot of comments and questions from many people wanting to know about their problems. One of the things I learned was that there's a real lack of education with people concerning their own bodies and just basic principles of science and health that I think really should be enforced in -- starting even in grade school.

  • 12:52:58

    SCOTTChildren should understand some medical terms. They should be learning about their bodies, what questions to ask. And going to the Internet is sometimes a little bit like throwing somebody in the cockpit of a 747 and saying, OK, well, you know, here's some data. Go fly this thing. It's a little overwhelming.

  • 12:53:19

    NNAMDITo which, Dr. Rahul Parikh, you think -- how do you deal with the challenge of it being overwhelming for people who are not informed enough about their basic body parts?

  • 12:53:30

    PARIKHYeah. I'm, you know, I think it goes back to this original question of health literacy and when you start your understanding of your own body and the human body and everything out in biology. I think, again, doctors are very good at managing information. We're managing information from lab results and radiology results, and we're interpreting, and we are explaining.

  • 12:53:52

    PARIKHI think the information online becomes much like that except instead of coming from a laboratory or an office of a radiologist, it's coming from the patient. And it is our -- in my opinion, it is our responsibility to be able to take that information and bring it down to Earth for our patients.

  • 12:54:08

    NNAMDIScott, thank you very much for your call. We move on now to Martha in Fairfax, Va. Martha, you're on the air. Go ahead, please.

  • 12:54:16

    MARTHAThank you. This topic is so close to my heart. I worked for the Adult Congenital Heart Association as a volunteer board member because my son was born with a heart condition 27 years ago and has had seven open-heart surgeries. So the electronic monitoring medical information, to me, I would love it if you could just get a microchip. And anywhere I took him, they could just scan and he would -- everybody would know everything.

  • 12:54:41

    MARTHABut they are piloting a program in Washington Children's Medical Center and in conjunction with American College of Cardiology called Follow My Heart. And you're given a card and all your EKGs, CAT scans, CTs, casts, blood work, meds, everything is on there. The problem is and your -- one of your doctors mentioned it, who wants to manage this? Is it the 27-year-old who's living his life and is busy? Guess what? He doesn't want to manage it.

  • 12:55:13

    MARTHASo he's got this great system, but it doesn't work unless you're maybe 50 and retired, or your children are all grown, and you have lots of spare time. So I would like the doctors to maybe touch on how we can make medical cards like this which are so valuable when people aren't going to be able to treat my son at most hospitals because they've never seen a condition like his, and yet he won't put the information himself in the card because he can't be bothered.

  • 12:55:41

    NNAMDIRahul Parikh.

  • 12:55:42

    PARIKHWell, I think -- first, I want to say, I think the opportunity -- and I think we've sometimes lose this -- the opportunity to really deliver health care using either the Internet or mobile devices is tremendous right now. And I don't even think we're beginning to scratch the surface on where this could take us in terms of customizing diagnosis and therapy and education for patients.

  • 12:56:06

    PARIKHThere are many companies now and some of them are based right out here in Silicon Valley who are trying and working very hard to create the kind of information that would help your son and deliver to him on his own -- in his own way. My own medical group, we post our lab results online, release them to patients so they can look at them and get interpretations from us.

  • 12:56:30

    PARIKHWe let patients email us. We have mobile apps now that are delivering notifications to patients who need vaccines or the screening tests. So -- but we are just scratching the surface here. And we consider ourselves pretty far ahead of our own colleagues and other health systems.

  • 12:56:48

    NNAMDISusannah.

  • 12:56:49

    FOXWell, I wanted to say that I love that you called and -- because I've heard of some really interesting programs especially with parents of children born with -- in particular congenital heart defects. You'll never find a more passionate advocate than a mom, and this is the generation of people who are really wired. And if you give them tools to help their children and to help themselves then they'll use it.

  • 12:57:18

    FOXI also have to mention that since I've been working in technology for about 15 years, all I know is that I can never predict what people are going to use and what people are going to love. And the VA had an experience where they created a very simple download called Blue Button where people were able to download just the basics of their medical record from the VA health system. Nobody really knew how many veterans would be interested in this. They had over a million downloads in the first year.

  • 12:57:45

    NNAMDIAnd I'm afraid that's all the time we have. Susannah Fox is an associated director of the Pew Research Center. She studies the intersection of technology and health care. Susannah, thank you so much for joining us.

  • 12:57:56

    FOXThank you.

  • 12:57:57

    NNAMDIAnd Dr. Rahul Parikh is a physician and writer in the San Francisco Bay area. Rahul, thank you so much for joining us.

  • 12:58:05

    PARIKHThank you very much and thanks to Susannah.

  • 12:58:07

    NNAMDIAnd thank you all for listening. I'm Kojo Nnamdi.

Related Links

Topics + Tags

Comments

comments powered by Disqus
Most Recent Shows

Winter Reading 2014

Thursday, Dec 18 2014Whether you like horror stories or cookbooks, poetry or works in translation, we consider a range of titles that will keep you turning pages. And we want to know what's on your reading list, so join the conversation on air or on our website to share the best book you've read this year.