How to talk to your doctor about information you find online

More and more people are going online to search for information about their health. Though it can be a minefield, where unverified sources abound, searching the internet can help people to understand different health problems, and give them access to emotional and social support.

10 dec 2017--For many in the UK, getting to actually see a GP remains difficult, and constraints around appointment times mean that some discussions are often cut short. But by using the internet, patients can prepare for appointments, or follow up on issues that were raised in the consulting room but left them with unanswered questions.
But not everyone is so keen on patients using the internet in this way. Some GPs and other heath professionals have doubts about the quality and usefulness of the information available. There are also suggestions that "cyberchrondria" may be fuelling a surge in unnecessary tests and appointments.
Similarly, though so many people are using online resources to fill in gaps in their knowledge, or to help them ask the right questions, they may not be comfortable bringing it up in the consulting room.
For our latest research project, we wanted to find out just why it can be so difficult to discuss online information with doctors. We found that in addition to people being embarrassed in case they have misunderstood the information, or can't remember it accurately, they also fear a negative reaction from the GP who may think they are difficult or challenging.

How to make it work

So how can you as a patient bring up online information with your doctor? First, it sounds obvious but you need a good, open relationship with your GP. Tell them you have been looking online, but ask for their feedback on the information, and for any useful sites they know of. We found that patients with a good doctor relationship felt able to discuss information and ideas from websites and online forums in a considered and critical manner.
Importantly, it is not about the patient trying to be the doctor. Ideally, patients should bring along their information, use it to help explain their key concerns, or detail the options they've explored, but also make clear that they still want and value their GP's input on their findings.
Some of the patients we spoke to told us that they are acutely aware of their doctor's negative feelings towards the internet. In these situations, people are sometimes tempted to disguise the source of their information. Rather than openly discussing their findings from the internet, they may pretend they got the information elsewhere when mentioning it to their doctor or be very careful not to reveal its origin at all.
For some people we spoke to, the process of trying to integrate the results of their web searches into their communications with the GP was frustrating to say the least. They felt uncomfortable, embarrassed, and sometimes held back key information. This made for unproductive meetings which were felt to be a waste of time.
This process can definitely be improved. As more appointments are going to be conducted over smartphone rather than face to face, and some GPs have admitted using Wikipedia to diagnose patients, the rest of the process needs to catch up with technology.
There needs to be a new and more productive way to integrate online information into doctor-patient discussions. First of all, there should be better ways for patients to collect and organise accurate information online so that they can organise their thoughts and prepare for a visit.
In the consulting room itself, GPs should use the research as an opportunity to have more productive discussions, and use it as a way to teach patients more about their own health issues. They need to question the information source, message and credibility, but GPs could also use it as an opportunity to nudge patients to think about their health options and consider what's important to them.
Just as a GP is not solely responsible for the health of a patient, neither is the patient themselves. Internet research can no longer be dismissed. Even if inaccurate, it can help build a better relationship between patient and doctor, and give them both a better understanding of managing health in the modern world.

This article was originally published on The Conversation. Read the original article.

Provided by The Conversation

Race, education, income impact trust in health information

Race, education, and income impact health information-seeking, confidence in obtaining health information and trust in health information sources.

02 dec 2012--A recent study in the Journal of Healthcare for the Poor and Underserved, found that while 70 percent of all U.S. adults seek health-related information from the Web, their doctors, television and other sources, factors such as race, ethnicity, education level and economic status can make it harder for some to access such essential information.

The study of 3,243 respondents to the Health Information Network Trends Survey (HINTS), found that minorities, especially those with less education and lower incomes, were less likely than Whites to seek health information and were not as confident about their ability to obtain health information. And, although doctors and other health professionals were rated as the most trustworthy source of information, Hispanics and Blacks were slightly less likely to trust them.

"It is critical that everyone has equal access to and trust in our healthcare system," said Amanda Richardson, Ph.D., lead author of the study. "Unequal access and lack of trust only contributes to existing disparities in health outcomes."

Those with less education, especially with a high school diploma or less, were less confident in their ability to find health information and less likely to trust government health agencies than those with college degrees. People with lower incomes were less likely to trust a doctor or health professional or the Internet as sources of information than those with higher incomes.

"People who are not well informed are going to make worse decisions," said Doug Evans, Ph.D., professor of Prevention and Community Health and of Global Health at the George Washington University School. "They are not going to know how to promote or maintain their own health, how to seek proper screenings or seek care in a way that will keep illness from progressing."

The answer, says Richardson, is better communication. "Outreach efforts from the healthcare community, tailored health messages and improved communication between health care providers and underserved populations will likely improve health information seeking among those who most need it, as well as the confidence and trust they have in our healthcare system," said Richardson.

Further research may be needed to determine the best method of delivery.

"We need to make it easier," said Evans. "For example, many people now have Internet access but for some lower income folks, the primary means may be a mobile device. There is reliable information out there, but the question is how to get it to traditionally medically disadvantaged populations. That's the question we need to ask."

More information: A. Richardson, J. Appleyard Allen, X. Haijun, D. Vallone (2012). Effects of Race/Ethnicity and Socioeconomic Status on Health Information-Seeking, Confidence, and Trust, Journal of Health Care for the Poor and Underserved.

Provided by Health Behavior News Service

Logging On for a Second (or Third) Opinion

By JOHN SCHWARTZ
03 oct 2008--When Terri Nelson learned she had a large fibroid tumor in her uterus, she went online.
There is nothing new in that, of course. The intrepid and the adept were going to the Web for health information as long ago as the 1980s, well before Google and other search engines made it accessible to a wider audience.
These days, that is pretty much everyone. At least three-quarters of all Internet users look for health information online, according to the Pew Internet and American Life Project; of those with a high-speed connection, 1 in 9 do health research on a typical day. And 75 percent of online patients with a chronic problem told the researchers that “their last health search affected a decision about how to treat an illness or condition,” according to a Pew Report released last month, “The Engaged E-Patient Population.”
Reliance on the Internet is so prevalent, said the report’s author, Susannah Fox, the associate director at Pew, that “Google is the de facto second opinion” for patients seeking further information after a diagnosis.
But paging Dr. Google can lead patients to miss a rich lode of online resources that may not yield to a simple search. Sometimes just adding a word makes all the difference. Searching for the name of a certain cancer will bring up the Wikipedia entry and several information sites from major hospitals, drug companies and other providers. Add the word “community” to that search, Ms. Fox said, and “it’s like falling into an alternate universe,” filled with sites that connect patients.
As a result, said Dr. Ted Eytan, medical director for delivery systems operations improvement at the Permanente Federation, “patients aren’t learning from Web sites — they’re learning from each other.” The shift is nothing less than “the democratization of health care,” he went on, adding, “Now you can become a national expert in your bedroom.”
These expanded capabilities allow people to share information easily, upending the top-down path of information between doctors and patients. Today, said Clay Shirky, an expert in the evolving online world, patients are “full-fledged actors in the system.”
And they have plenty of company. Benjamin Heywood, the president of PatientsLikeMe.com, a site that allows patients to track and document their conditions and compare notes with other patients, says that with a growing online population, it becomes possible to research highly specific conditions — say, being a 50-year-old with multiple sclerosis who has leg spasms and is taking a certain combination of drugs.
“We are really about measuring value in the real world,” he said.
There are so many sites today and the landscape is changing so rapidly that it would take an encyclopedia rather than a newspaper to list them. But they can be grouped into five broad, often overlapping, categories:
GENERAL INTEREST Sites like WebMD (webmd.com), Discovery Health (health.discovery.com) and The New York Times (nytimes.com/health) provide information about disease, news and lifestyle advice, as do medical institutions like the Mayo Clinic (mayoclinic.com).
MEDICAL RESEARCH SITES offer access to the published work of scientists, studies and a window into continuing research. Examples include PubMed (ncbi.nlm.nih.gov/pubmed) from the National Library of Medicine; clinicaltrials.gov, which tracks federally financed studies; psycinfo (apa.org/psycinfo), with its trove of psychological literature; and the National Center for Complementary and Alternative Medicine (nccam.nih.gov), the government’s registry on alternative medicine research.
PATIENT SITES for groups and individuals are booming — so much so that they are increasingly used by researchers to find patients for studies. These include the Association of Cancer Online Resources (acor.org) and e-patients (e-patients.net), as well as Patients Like Me and Trusera (trusera.com), which provide a bit of Facebook-style social connectivity for patients, along with the ability to share their stories in clinical, data-laden detail.
DISEASE-SPECIFIC SITES focus on a particular condition and are often sponsored by major organizations like the American Heart Association (americanheart.org), the American Cancer Society (cancer.org) and the American Diabetes Association (diabetes.org). But smaller groups can put together extensive resources as well, with sites like breastcancer.org and Diabetes Mine (diabetesmine.com), which calls itself the “all things diabetes blog.”
WEB TOOLS These sites help people manage their conditions — for example, sugarstats.com for diabetes, Destination Rx (drx.com) for comparing drug prices, and YourDiseaseRisk.com, a service of the Washington University school of medicine that helps patients determine their risk for various problems.
All of the changes in the Internet and the ways people use it help explain why Terri Nelson’s experience in 2008 is very different from what it might have been in 1998.
Ms. Nelson, who lives in Portland, Ore., received her diagnosis on Aug. 11. She had two weeks before a follow-up visit with her surgeon. Ms. Nelson and her husband, Stewart Loving-Gibbard, used the time to research fibroids and the most common treatments.
Ms. Nelson started with straightforward information gathering, checking the articles on fibroid tumors at sites that included the Mayo Clinic and PubMed. Then she reached out to the community of people with fibroid tumors at ACOR and other sites. (“Those had to be evaluated carefully,” she said, “to find the nuggets of valid information in the vast sea of online hypochondria.”)
Having spent many years trolling roisterous online forums, however, she had developed that essential Internet tool: what might be called a personal baby/bathwater algorithm that helps people to sift through mountains of information to find what is relevant. She found a blog for the layperson, “Inquisitive Geek With Fibroid Tumors,” that featured wide-ranging discussions and, she said, “was really useful” and specific to her condition.
By the time she went into the consultation with her surgeon, she knew that the old-school way of dealing with her grapefruit-size tumor would probably have been a hysterectomy. But that can impair sexual response, among other side effects; a growing number of doctors prefer abdominal myomectomy, which leaves the uterus intact. The surgeon laid out the options and recommended that approach as well, confirming Ms. Nelson’s research.
During the surgery and recovery, Mr. Loving-Gibbard used Twitter, the short-message communication service, to keep friends and family apprised of her condition. Twittering an operation might seem frivolous, but when Ms. Nelson’s teeth began chattering after the procedure, a friend following the updates suggested it could be a potentially hazardous side effect, tardive dyskinesia, that can occur with one of the antinausea drugs Ms. Nelson was taking. Mr. Loving-Gibbard, who had been researching that very point when the message from the friend, Ken Yee, came in, was able to get the medication changed.
After the procedure, they posted photographs of the surgery and tumor on the photo-sharing site Flickr.com under the heading “Extracting a Pound of Flesh” (flickr.com/photos/littlecrumb/sets/72157607218121711/).
They are not for the squeamish, but as Ms. Nelson said, “My husband’s family is mostly doctors, so they were all interested in seeing the photos, and most of my friends are morbidly fascinated.”
As patients go online to share information and discuss their care, they are becoming something more: consumers. Amy Tenderich, the creator of Diabetes Mine has turned her site into a community for diabetes patients and an information clearinghouse for treatments and gadgets — even going so far as to publish an open letter last year to Steven Jobs, the Apple Computer co-founder, challenging him to design medical devices like insulin pumps that are as sleek and easy to use as an iPod.
Dr. Talmadge E. King Jr., chairman of the department of medicine at the University of California, San Francisco, says doctors are coming around to seeing the value of a patient who has gone online for information.
Patients in his pulmonary practice, he said, sometimes come into his office holding medical journal articles he has written “and quiz me.” The better-educated patient might stump the doctor, he went on, but these days “it’s much easier for me to look them straight in the eye and say, ‘I don’t know’ ” and promise to get back to them. “Patients know you’re not all-knowing,” he said. “They’re not upset by that.”
Can online information be trusted? The answer, increasingly, is yes. In a study earlier this year, a report in the journal Cancer looked at 343 Web pages about breast cancer that came up in online searches. The researchers found 41 inaccurate statements on 18 sites — an error rate of 5.2 percent. Sites promoting alternative medicine were 15 times as likely to offer false or misleading health information as those sites that promoted conventional medicine, the study found.
Matthew Holt, who with Indu Subaiya created a conference, Health 2.0, that showcases innovation, says the marketplace in information can correct itself over time.
“In the end,” he said, “the more people you have in the conversation, the better information drives out the worse information.”

You’re Sick. Now What? Knowledge Is Power.

By TARA PARKER-POPE
01 oct 2008--Are patients swimming in a sea of health information? Or are they drowning in it?
The rise of the Internet, along with thousands of health-oriented Web sites, medical blogs and even doctor-based television and radio programs, means that today’s patients have more opportunities than ever to take charge of their medical care. Technological advances have vastly increased doctors’ diagnostic tools and treatments, and have exponentially expanded the amount of information on just about every known disease.
The daily bombardment of news reports and drug advertising offers little guidance on how to make sense of self-proclaimed medical breakthroughs and claims of worrisome risks. And doctors, the people best equipped to guide us through these murky waters, are finding themselves with less time to spend with their patients.
But patients have more than ever to gain by decoding the latest health news and researching their own medical care.
“I don’t think people have a choice — it’s mandatory,” said Dr. Marisa Weiss, a breast oncologist in Pennsylvania who founded the Web site breastcancer.org. “The time you have with your doctor is getting progressively shorter, yet there’s so much more to talk about. You have to prepare for this important meeting.”
Whether you are trying to make sense of the latest health news or you have a diagnosis of a serious illness, the basic rules of health research are the same. From interviews with doctors and patients, here are the most important steps to take in a search for medical answers.
Determine your information personality.
Information gives some people a sense of control. For others, it’s overwhelming. An acquaintance of this reporter, a New York father coping with his infant son’s heart problem, knew he would be paralyzed with indecision if his research led to too many choices. So he focused on finding the area’s best pediatric cardiologist and left the decisions to the experts.
Others, like Amy Haberland, 50, a breast cancer patient in Arlington, Mass., pore through medical journals, looking not just for answers but also for better questions to ask their doctors.
“Knowledge is power,” Ms. Haberland said. “I think knowing the reality of the risks of my cancer makes me more comfortable undergoing my treatment.”
Dr. Michael Fisch, interim chairman of general oncology for the University of Texas M. D. Anderson Cancer Center, says that before patients embark on a quest for information, they need to think about their goals and how they might react to information overload.
“Just like with medicine, you have to ask yourself what dose you can take,” he said. “For some people, more information makes them wackier, while others get more relaxed and feel more empowered.”
The goal is to find an M.D., not become one.
Often patients begin a medical search hoping to discover a breakthrough medical study or a cure buried on the Internet. But even the best medical searches don’t always give you the answers. Instead, they lead you to doctors who can provide you with even more information.
“It’s probably the most important thing in your cancer care that you believe someone has your best interests at heart,” said Dr. Anna Pavlick, director of the melanoma program at the New York University Cancer Institute. “In an area where there are no right answers, you’re going to get a different opinion with every doctor you see. You’ve got to find a doctor you feel most comfortable with, the one you most trust.”
Keep statistics in perspective.
Patients researching their health often come across frightening statistics. Statistics can give you a sense of overall risk, but they shouldn’t be the deciding factor in your care.
Jolanta Stettler, 39, of Denver, was told she had less than six months to live after getting a diagnosis of ocular melanoma, a rare cancer of the eye that had spread to her liver.
“I was told there is absolutely nothing they could help me with, no treatment,” said Ms. Stettler, a mother of three. “I was left on my own.”
Ms. Stettler and her husband, a truck driver, began searching the Internet. She found Dr. Charles Nutting, an interventional radiologist at Swedish Medical Center in Englewood, Colo., who was just beginning to study a treatment that involves injecting tiny beads that emit small amounts of radiation. That appeared to help for about 18 months.
When her disease progressed again, Ms. Stettler searched for clinical trials of treatments for advanced ocular melanoma, and found a National Institutes of Health study of “isolated hepatic perfusion,” which delivers concentrated chemotherapy to patients with liver metastases. After the first treatment, Ms. Stettler’s tumors had shrunk by half.
“I don’t like statistics,” she said. “If this study stops working for me, I’ll go find another study. Each type of treatment I have is stretching out my life. It gives me more time, and it gives more time to the people who are working really hard to come up with a treatment for this cancer.”
Don’t limit yourself to the Web.
There’s more to decoding your health than the Web. Along with your doctor, your family, other patients and support groups can be resources. So can the library. When she found out she had Type 2 diabetes in 2006, Barbara Johnson, 53, of Chanhassen, Minn., spent time on the Internet, but also took nutrition classes and read books to study up on the disease.
“I was blindsided — I didn’t know anybody who had it,” said Ms. Johnson, who told her story on the American Heart Association’s Web site, IKnowDiabetes.org. “But this is a disease you have to manage yourself.”
Tell your doctor about your research.
Often patients begin a health search because their own doctors don’t seem to have the right answers. All her life, Lynne Kaiser, 44, of Plano, Tex., suffered from leg pain and poor sleep; her gynecologist told her she had “extreme PMS.” But by searching the medical literature for “adult growing pains,” she learned about restless legs syndrome and a doctor who had studied it.
“I had gone to the doctors too many times and gotten no help and no results,” said Ms. Kaiser, who is now a volunteer patient advocate for the Web site WhatIsRLS.org. The new doctor she found “really pushed me to educate myself further and pushed me to look for support.”
Although some doctors may discourage patients from doing their own research, many say they want to be included in the process.
Dr. Fisch of M. D. Anderson recalls a patient with advanced pancreatic cancer who decided against conventional chemotherapy, opting for clinical trials and alternative treatments. But instead of sending her away, Dr. Fisch said he kept her in the “loop of care.” He even had his colleagues use a mass spectroscopy machine to evaluate a blue scorpion venom treatment the patient had stumbled on. It turned out to be just blue water.
“We monitored no therapy like we would anything else, by watching her and staying open to her choices,” Dr. Fisch said. “She lived about a year from the time of diagnosis, and she had a high quality of life.”
Dr. Shalom Kalnicki, chairman of Radiation Oncology at the Montefiore-Einstein Cancer Center, says he tries to guide his patients, explaining the importance of peer-reviewed information to help them filter out less reliable advice. He also encourages them to call or e-mail him with questions as they “study their own case.”
“We need to help them sort through it, not discourage the use of information,” he said. “We have to acknowledge that patients do this research. It’s important that instead of fighting against it, that we join them and become their coaches in the process.”

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Microsoft Enters Health Information Domain with HealthVault

WASHINGTON, Oct. 4 -- Computer giant Microsoft is surfing into the health-care information field.
The company announced today the creation of what it calls HealthVault, a free "software and services platform" that allows people to store health information securely online.
Information such as blood pressure or weight loss can be uploaded and -- once online -- can be shared with doctors or any other recipients a user chooses, the company said.
The goal is to reduce "unnecessary confusion, paperwork and delays," Microsoft said.
"The launch of HealthVault makes it possible for people to collect their private health information on their terms and for companies across the health industry to deliver compatible tools and services built on the HealthVault platform," Microsoft said in a statement.
The company said a number of companies and organizations are already involved in with project, including among others the American Diabetes Association, the American Heart Association, Home Diagnostics Inc., and NextGen Healthcare Information Systems Inc.
The HealthVault software is available online, the company said.
Microsoft is also offering a search function that will allow consumers to track down health-related information. Advertising on the search engine is expected to support the free HealthVault site, the company said.