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Guest Blog: What Fuels Patients Searching Online

Andrew Schorr
Thursday, May 10th, 2012

Andrew Schorr is the founder and host of Patient Power ®, a website and radio program designed to connect people with news and experts on health. Want to know more about Andrew Schorr and Patient Power? Go to: www.patientpower.info or follow him on twitter. This post originally appeared on the Patient Power Blog.

From day one, Patient Power has been about giving a voice to patients and addressing the real concerns and issues of patients and caregivers. That’s one reason we do regular visitor surveys, such as our current Spring 2012 survey. We constantly strive to better understand the people we serve; their needs and concerns; and the impact of what we provide. The initial results are fascinating and I wanted to share some here (click here to see the up-to-date results) . If you haven’t already participated in the survey, please add your voice right now.

  • While 94 percent of survey respondents who visit Patient Power are confident in their knowledge about their health concern, 9 percent are not confident their doctor is knowledgeable. And 26 percent say they doctor does not do enough to help them as patients be more knowledgeable or in control.
  • 35 percent say they look for updates on their condition every day.
  • The number one reason they come to Patient Power is to see or hear interviews with experts in their condition.

When we asked them to rank the sources of their information:

  • Doctor or Nurse was number one but Patient Power was a very close second followed by patient advocacy groups.
  • Pharmaceutical company websites were at the bottom of the list and the general news media was only slightly higher.

When you wonder what people do with the information, the survey told us:

  • 84 percent said they have or will discuss what they learned from Patient Power with their doctor and the number one benefit they cite is that it gives them more confidence in their discussions
  • 97 percent have or will recommend Patient Power to others

My takeaways from this:

Among patients with serious illnesses, like those we serve, patients are becoming very savvy and active as they search for information frequently. They wish their doctors would do more, but since they don’t patients go searching themselves and become confident in what they know.

Despite millions spent by pharmaceutical companies and general health sites, patients eventually zero in on sources that are the most specific and current for them. That remains their doctor or nurse or niche websites or advocacy groups that speak directly to them. Then they depend upon these sources as their “radar” to tell them when there is something new and to put it in perspective.

I am gratified Patient Power ranks so highly and that visitors recommend us to others. If you are one of them, thank you! And you can be sure we are noting your suggestions and will improve with your guidance. We know what we do can make a huge difference in your health and we honor the trust you put in us.

Wishing you and your family the best of health!

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Guest Blog: A Second Opinion from Dr. Google

Carolyn Thomas
Monday, April 16th, 2012

Carolyn Thomas is a heart attack survivor and a 2008 graduate of the annual WomenHeart Science and Leadership Symposium at Mayo Clinic in Rochester, Minnesota – the first Canadian invited to attend this prestigious training event.  She was also named by “Our Bodies Ourselves” of Boston in 2009 as one of 20 inductees from seven countries acknowledged as “Women’s Health Heroes” for community activism in promoting women’s health.  You can read more from Carolyn on her two blogs: Heart Sisters and the Ethical Nag.

I’ve often suspected that if only the E.R. doctor who misdiagnosed me with indigestion had bothered to just Google my cardiac symptoms (chest pain, nausea, sweating and pain radiating down my left arm), he and Dr. Google would have almost immediately hit upon my correct diagnosis: myocardial infarction, or heart attack. But instead, he pronounced that I was “in the right demographic” for acid reflux. I was sent home that day feeling horribly embarrassed for having made a fuss over nothing but a case of indigestion. As time went by, however, and my debilitating symptoms became truly unbearable, I turned to Dr. Google.

And that’s why I forced myself, despite my embarrassment, to return to the E.R. – but with the pronouncement of that E.R. doc still ringing in my ears:

“It is NOT your heart!”

Many physicians out there, however, are not happy when their patients consult Dr. Google to research troubling symptoms like mine.

A female heart patient from Wisconsin, for example, shared recently:

“When I first began discussing my condition with my doctor, he said he hadn’t realized I was a doctor. I told him I’m not a doctor, but I am a very good researcher. He gave that small, insulting half-laugh that doctors reserve for this response and said that he wasn’t sure he approved of patients doing research.

“I told him I had no inclination to apologize for it. I said that I knew he was interested in my health, but not nearly as interested as I am.

“It’s his job, but it’s my life.”

Dr. Stuart Foxman of the College of Physicians and Surgeons of Ontario has written about doctors’ reaction to the growing phenomenon of patients who are self-educated “medical Googlers”. On his blog for physicians called DocTalk, he cited a survey of physicians that found many docs rate the know-it-all Googler as somewhere between “frustrating” and “irritating”.

This study noted a number of doctors’ concerns.  Some patients used the information gleaned on their own for self-diagnosis or self-treatment. Some doctors believed that the information caused the patient unnecessary confusion and distress. Dr. Foxman explained:

“All of these seem like legitimate concerns on the part of physicians. The highly curious and informed patients were sometimes perceived as ‘challenging’ with a tendency to test the knowledge of physicians. Some doctors felt that these patients were overly assertive, undermined their authority, and did not show sufficient trust in their health care provider.”

Consider, for example, Dr. Scott Haig‘s classic TIME magazine essay called ‘When The Patient Is A Googler’ - a scathingly arrogant attack that describes  his Googling patients as:

“. . . suspicious and distrustful, their pressured sentences bursting with misused, mispronounced words and half-baked ideas.”

Just a tad oversensitive to having his authority undermined, wouldn’t you say?

The reality, of course, is that, despite doctors like Haig, patients are indeed consulting Dr. Google in growing numbers.  According to the Pew Internet and American Life Project, 80% of us use the internet to “prepare for or recover from” our doctor visits.

Well-known physician blogger Dr. Kevin Pho believes that it’s time to stop debating whether or not patients should research their own symptoms.  It’s happening already, as he warns:

“The medical profession would be better served to handle this new reality.”

My heart sister Laura Haywood-Cory survived a heart attack at the age of 40, caused by Spontaneous Coronary Artery Dissection. She recently explained her own need to seek information and support online in her essay on the Stanford School of Medicine blog, Scope:

“As a patient with a rare condition that most cardiologists have never encountered, I and others like me have had to become our own experts. And since our numbers are small, we aren’t able to gather for support in person; we do it online.

It seems to me that the answer isn’t to discourage people from seeking medical information from Dr. Google, but rather to teach people, starting in school, some critical thinking skills. How to sift the online wheat from the chaff and how to determine which sites have credible information, versus ones that are just selling the latest formula of snake oil.”

Dr. Michael Lowenstein, co-director of the California-based Waismann Institute, believes that the more educated patients are about their health, the better care they’ll get. He also says patients need to be their own advocates in today’s health care environment. For example:

“There are patients who educate themselves and go to reputable websites that have good information. It makes for an intelligent dialogue between doctor and patient about the medical condition and treatment options.”

Since we know that many patients are already inclined to go online and search for information, physicians should look at this as an opportunity to enhance their own websites, warns Erin Sharaf of Northeastern University.

“It’s smart for medical practices to have a website and steer their patients to better resources. Refer them to other reputable external sites with links from your own website, so that patients know they are credible, respected and have accurate information. It’s also important to both stay up to date with the medical literature as well as the lay press so you know what your patients are reading.”

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Participatory Medicine 2.0

Chris Gibbons
Tuesday, March 20th, 2012

Chris Gibbons, MD, MPH, is the associate director of the Johns Hopkins Urban Health Institute, the director of the Johns Hopkins Center for Community Health, and holds faculty appointments at the Johns Hopkins Schools of Medicine and Public Health. Dr. Gibbons is a member of the Board of the Center for Advancing Health. He blogs regularly on the Healthcare Disparities Solutions Blog , a blog about healthIT innovation for disparities solutions. Want to read more from Dr. Gibbons? Subscribe to the RSS feed. This post originally appeared on Project HealthDesign.

In “Participatory Medicine: Must You Be Rich to Participate?” in the Journal of Participatory Medicine, Graedon and Graedon pose a question: “Is the participatory movement leaving [the non-affluent] behind?” Their article suggests that only the affluent members of our society can afford care that is participatory. Their premise appears to be built on two assumptions that should be regarded as faulty.

Redefining patient engagement

The first is that the only engagement relevant to the participatory community is the engagement between a patient and a clinical provider. The primary causes of morbidity and mortality in contemporary society are chronic diseases. By definition, individuals have these ailments for up to 30 or 40 years. Antecedents of atherosclerosis (fatty streaks) have been documented in 10-year-old children (5), yet most individuals only become aware of the existence of a problem after the age of 50. As such, the actions, behaviors and exposures that impact health begin early in life and are often the result of engagement with a vast array of individuals (relatively few of which are medical providers). In addition, most patients are actually in clinical settings for a relatively short period of time over the course of their lives. In other words, most of the interactions, or participation, that govern the important behaviors that impact health occur outside of the clinical setting and between patients and non-clinicians.

This reality is in no way an attempt to downplay the importance of either clinical encounters or clinical providers, but rather an attempt to illustrate the fact that when we fail to understand the full context of participatory medicine, we may similarly fail to understand the true barriers, drivers and opportunities for participatory medicine to make a difference. More importantly, we may also be unable to fully understand why patients have such difficulty achieving clinical goals or why well-intentioned and elegantly designed interventions yield only marginal results. In fact, emerging data suggest that patients are participating in their health care in a big way, just not as much with their health care providers.

Patients turn to the Internet for health information and support

For the first time ever, more Americans are turning to the Internet for health and medical information than are turning to health care providers.(1) In addition, emerging evidence suggests that the Internet has considerably more influence over consumer health decisions and actions than traditional channels like print, TV and radio.(3) The numbers of online health seekers have swelled to more than 175 million people to date.(6) Increasingly, they report having become informed and empowered. They have generally been able to find what they are looking for and report that the Internet is increasingly helping them to connect to emotional support and practical help for dealing with their health issues.(2) In fact, racial and ethnic minorities and the poor appear to be using some forms of technology more than their non-minority counterparts.(4)

We can argue and speculate as to why these things are happening or the long-term impact of these shifts, but the reality is that these shifts are, in fact, happening. These changes may represent an important opportunity to reach and engage many patients, including those who historically have been left behind. The most important questions then become:

Do our evolving notions of what health care and participatory medicine need to become include the realities in which patients live?
Will current and future health care providers embrace these realities and lead the inevitable change?
If not, we may be destined to well-intentioned but largely unrealistic notions that ultimately leave the health care system far behind where many patients are already going.

References:
1) Cybercitizen Health v8.0. 2008. New York, NY, Manhattan Research.
2) E-Health Solutions for Healthcare Disparities. New York: Springer Pubs; 2008
3) Cybercitizen Health v9.0. 2010. New York, NY, Manhattan Research.
4) Korzenny F, Vann L. Tapping into thier connections: The multicultural world of social media marketing. 2009. Talahassee, FL, Florida State University Center for Hispanic Marketing Communication.
5) Tanganelli P, Bianciardi G, Simoes C, et al. Distribution of lipid and raised lesions in aortas of young people of different geographic origins (WHO-ISFC PBDAY Study). World Health Organization-International Society and Federation of Cardiology. Pathobiological Determinants of Atherosclerosis in Youth. Arterioscler Thromb 1993; 13(11): 1700-10
6) Taylor H. Cyberchondriacs on the rise? [electronic article]. 2010.

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Guest Blog: How Information Can Help Conquer Fear

Andrew Schorr
Monday, March 19th, 2012

Andrew Schorr is the founder and host of Patient Power ®, a website and radio program designed to connect people with news and experts on health. Want to know more about Andrew Schorr and Patient Power? Go to: www.patientpower.info or follow him on twitter. This post originally appeared on the Patient Power Blog.

I spent one day last week at MD Anderson Cancer Center in Houston.  I was there for a checkup, having first visited the center 16 years ago. There are several new buildings now and its much bigger, but the leukemia center is still on the 9th floor and many of the people who work there are still the same – only a bit older, just like me. One of the things I love about the leukemia center is that it hasn’t moved. The waiting room is sizeable but quickly becomes jammed with people. They have chronic lymphocytic leukemia or CLL, like me, as well as other types of leukemia. Some look the picture of health. Others wear masks and are pushing IV poles. We’re all crammed together in a way that intrudes on our personal “space.” But so what?  We’re all there because we have a serious diagnosis and we want to see doctors who are among the best. The faces show a mixture of fear, courage and confidence.

I have sat in all these chairs. In 1996, it was the fear chair, I had just been diagnosed and I was afraid I did not have long to live. After all, leukemia is a “terminal” condition right? It was just after getting up from that chair and coming into the exam room with Dr. Michael Keating, a CLL expert, that the fear began to fade because I was being educated. No, it was not aggressive in my case. No, I did not need treatment right away. Yes, my wife and I should consider having a third child. And yes, when I needed treatment there will probably emerge something better – to make a longer life possible.

The other day – 16 years later – I was the one in the confident chair. Dr. Keating had been right. New treatment had come along when I needed it. And it worked. But, last week, there were people sitting around me who were back where I had started. One was a vascular surgeon – a doctor. He was quite worried with the new diagnosis of CLL. While I know many have more aggressive disease than I have had I basically told him what a savvy patient told me, “chill out.” It would be very unlikely he’d be dying anytime soon and that he needed information to understand his specific situation.

I told the same thing to a young man sitting across from me with chronic myelogenous leukemia or CML. Here the situation looked even better. An approved medicine had already been working well for months and he felt good. Coming to MD Anderson was to ratify what their local doctor had started. He and his wife were looking for more information from an expert to give them peace of mind. I was happy for them, and knew the doctor with CLL would get there shortly, as well.

The power of information on what you are dealing with can immediately help you conquer your fear. Yes, I was in a whole roomful of people with worrisome diagnoses. It’s scary and our friends and relatives lose sleep over what the future holds for us. But there’s a medicine we can take and we can urge them to take too: information. Step one is get a clear picture of YOUR diagnosis, not that of the person in the next chair who may seem like you, but may not be. Step two is get the latest information from the most reliable sources that relates to that situation. At MD Anderson that usually gets down to what subtype of a disease do you have, how early is it, and is there an existing or experimental medicine that may match up?

Yesterday I interviewed a urologic oncologist who has prostate cancer himself. It has spread. He agrees that few doctors can keep up on all the new developments and what may apply to each patient. A lot is happening in many illnesses, thank goodness. The information is there. But, as he said, “You have to be a student of your disease. You have to strive to be in the know, to know what questions to ask so that the best care is served up for you.”

Back in the waiting room the other day, it developed into a “coffee klatch” like it does almost every day. People don’t hide their fears, they share them. And they share information and a boatload more is served up in the exam rooms by devoted staff. The day goes on, information flows in, and the fear begins to melt just a little bit.

I marvel at the process. It worked for me and I know it will work for you.

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