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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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More on…Patient Navigators and Talking to Your Pharmacist

Conversation Continues
Friday, April 20th, 2012

Conversation Continues feature ongoing discussions or news on current health topics with links to related materials.  They are part of the Center for Advancing Health’s portfolio of free, evidence-based coverage of what it takes to find good care and make the most of it. 

Two recent online posts build on topics we’ve explored previously on the Prepared Patient Forum. The first on finding and using patient navigators/advocates, the second on the value of working closely with your pharmacist.

On The Doctor Weighs In, Linda Alder, in Understanding Patient Advocates and Patient Navigators, explores the nuances between navigators and patient advocates. Linda notes that “The effort to engage and assist patients has been growing steadily over the last twenty years, and notable approaches have emerged to help patients increase their involvement in their medical care.  A couple of decades ago, research on geographic variation and subsequent variability in outcomes gave rise to Shared Decision Making, where patients were offered decision aides to help them learn about their diagnosis in order to make informed decisions in partnership with their medical providers. As personal computers have become ubiquitous, there has been the accompanying emergence of “e-patients”, where health consumers participate online to share experiences, offer advice and crowd source their data. Finally, propelled by current legislation and the emphasis on preventing hospital readmissions, we see the emergence of the “patient centered home”, where patients are the focus of the care plan.

It’s logical then, given the momentum, that there’s an interest in expanding the care team to provide professional expertise in assisting patients with the complexities of illness.” Click here for Linda’s full post.  See also Jessie Gruman’s Patient Navigators: Are They Necessary or Just Nice?

Patient Power’s Andrew Schorr reminds us to Don’t Hesitate to Ask Your Pharmacist! in a new video filmed at his local pharmacy.  Andrew shares the questions he thinks you should ask your pharmacists about your meds, side effects, etc. and remarks, “Pharmacists are among the most accessible of medical professionals, but sometimes we hesitate to consult with them about our medications, or we forget they are there to help. ”  For Andrew’s video click here.   For related posts see Jessie Gruman’s   Check Box Medicine …. and Herb Wells’ post: A Near Miss. A Good Pharmacist. A Serious Lesson.

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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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Guest Blog: The Disconnect Between Hospital Marketing and What Patients Need

Andrew Schorr
Tuesday, March 6th, 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.

If you have an acute health problem like a heart attack or stroke, the ambulance will usually take you to the nearest hospital. For something less urgent you will probably go where your primary care doctor refers you. But if you have something chronic and long-term – it could be diabetes, ongoing heart problems, or a cancer – you might have more to say about it and where you choose to get care. And a hospital’s claims of highly rated care or state-of-the-art, multimillion dollar equipment may be only part of the equation.

Hospital marketers don’t understand that. In our online and social networking media world, it is less about what THEY say about themselves and more about what WE say about them. Yes, they are being thrown into the same process as restaurants and hotels. Comments from other “customers” matter and WE are their customers, not just a “case” or HIPAA protected medical record number.

This week I am speaking to an audience of hospital marketers and communications people in Texas about this. A few of them “get it” already. But across the U.S. many don’t. They are relying on bragging about their doctors and equipment and, in only a limited way, give their patients a voice. And they don’t work hard to be part of the conversation with patients on an ongoing basis.

Think about this: when patients network with one another online the odds are the other patients don’t receive care at the same hospital or clinic. So it’s natural to compare notes. This conversation goes on all the time now on Facebook, on listservs, on patient advocacy group sites and in online groups. But few hospitals make it a foundation of what they do to be part of these conversations – to listen as well as to offer education and suggestions. Their normal “M-O” is that they do everything well (that’s what their CEO wants to believe), when a quick check among patients will show that they don’t. A little honesty and dialogue can go a long way.

Another thing they can do is acknowledge the other resources beyond diagnosis and treatment patients need. That’s where the myriad of patient advocacy groups come in. I believe hospitals should not only promote them but partner with them throughout the year. Don’t just exhibit at a non-profit’s fun run, but be involved with their services to patients month in month out and talk them up!  I would respect a hospital that educates me on what they believe they do well, explains other options, and also tells me how other organizations support me too. Yes, I know discharge planners do this and there are flyers in waiting rooms. But I mean much more, in marketing and PR the hospital spends money on. Explain how a hospital is part of our journey as a patient to be returned to a full life or as full a life as possible. A hospital is part of a team. They are not the whole team.

As my friend Betsy deParry, from Ann Arbor, says, “Hospitals need to include the voice of the patient in what they present. It’s not about them. It’s about us.”

Wish me luck with my speech. I’ll let you know if they 1) throw tomatoes 2) say what I envision is impossible for their business or 3) say they’ll try to do better.

Wishing you and your family the best of health!

 

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