Genetic Code in Personal Health Record

Innovation and entrepreneurship are the foundation of business in America. I marvel at all that is going on in the medical world these days. Who knows where it will all lead. I came across an article entitled, “Can genomics encourage use of personal health records?” on searchhealthIT.com. It peaked my interest and I began contemplating what it would mean to have that data plugged into my electronic medical record for my physicians and I to consider as we made decisions about my care.

The question of using genetic testing for prevention is not new. People are doing it now if they choose to do so. I’m interested in knowing how you feel about the possibility of having your genetic code plugged into your electronic medical record.

• How do you feel about knowing the diseases you might have an X % chance of acquiring?
• How would it affect you emotionally? Would knowing cause you worry?
• Would you change your life style if it meant slowing or preventing onset of the disease?
• Do you think having information from genetic testing would increase your chances for more accurate and timely diagnosis?
• How would testing for the disease regularly affect you? Would you be anxious each time or cause you undo worry?
• Do you think all who have access to your medical records should have access to your genetic information?
• Would having your genetic information in your personal health record entice you to use it for managing your overall health? That is the main question in the article that spurred this post.

Before you answer these questions here is a video you might want to watch. It adds another wrinkle. Unregulated private companies are offering direct-to-consumer testing. Personally, if I were to have the testing done I would do it through my doctor at a certified lab and I’d answer these questions for myself first.

Image from: science.howstuffworks.com

Nine New Drugs Added to FDA Watch List

The FDA has added nine drugs to their watch list. Because the cause and effect relationship has not been determined no actions have been or will be taken until further evidence suggests it’s necessary. Because a drug appears on the list it doesn’t mean people should stop taking them or that doctors should not stop prescribing the drug.

When drugs are added to the Watch List they don’t usually raise media attention, so I am including this post for your awareness should you be taking any of them. The drugs are: Asenapine maleate (Saphris), Dronedarone HCl (Multaq), Fenofibrate products, Golimumab (Simponi), Ibuprofen lysine (Neoprofen), Morphine sulfate; Naltrexone HCl (Embeda), Oxycodone HCl controlled-release tablets (Oxycontin) [new formulation], Regadenoson (Lexiscan) and Sevelamer HCl (Renagel). For more information including potential signal of a serious risk / new safety information and additional information (as of February 15, 2011) see the FDA’s site.

Proactive Actions You Can Take

If you are, you may want to talk with your doctor. Ask about your personal risks given your medical history, your symptoms, if any, and your blood test results. Ask if there are any tests that can be done to monitor for the dangerous side effects.

Do you think lists like these should be made more visible to the public? I do. I think patients need every piece of information available so they can make decisions that are right for them personally.

Image from:all-allergies.com

CT Scan a Bigger Risk than We Think

“Margo, we found some questionable areas in your lung. It would be best if we repeat the CT scan three times; one in six months, then at one year and again in two years,” the doctor said when reviewing my scan that had been done for another reason. I didn’t question him. I grew up with second-hand smoke and was on an executive team whose members smoked constantly in our very long meetings. So I agreed. About eight months after the last scan I had another almost whole-body CT scan to evaluate the possibility of open my iliac vein that has been blocked with blood clots since 1984.
And then… I read a post today on Dr. Wachter’s blog entitled, A Game-changing Statistic: 1 in 250. Here is the startling statistic: “A 20 year old who gets an abdominal-pelvic CT scan has a 1 in 250 chance of getting cancer from that single scan.”
Oops! I had four scans in less than three years, plus three mammograms, plus dental x-rays, plus I can’t remember what else that exposed me to radiation. I think I’m very fortunate that the findings from my surgery in January we Atypical Lobular Hyperplasia and not cancer, at least not yet anyway. We are waiting for an MRI result in August to determine my monitoring program going forward.

Another piece of information revealed in the blog post - CT scanners are not regulated. One study showed that in four hospitals the radiation dose was 66% higher than the usually quoted dose. Read the rest of Dr. Watcher’s blog post for more startling statistics.

Questions, Questions & More Questions…

You better believe I will be asking a lot of questions and do my very best to minimize / prevent any more CT Scans unless they are ABSOLUTELY necessary.

Three of the questions I’ll be asking of any doctor who wants to do a CT scan in the future are:

• What information will the scan provide?
• Is there another way to get the information without as much exposure to radiation?
• How will the scan help with diagnosis, decision making and treatment?
• What am I risk if I don’t have the scan? Is the risk greater than my chances of getting cancer given the number of scans I have already had?

That’s more than three questions – I was on a roll.

Unfortunately, asking the last question won’t get you a good answer much of the time. Dr.Wachter cites a study done in 2004 that concluded that less than 50% of radiologists and only 9% of ER doctors were aware of the risks from CT scans. And as always, you can obtain a second opinion.

This adorable picture pleads for a cure to breast cancer. We already know the cause of many breast and other cancers? We don’t need a cure for them. We just need to stop doing so many CT scans, 1/3 that are deemed to be unnecessary.The Gail Scale result for my cancer risk rated it at 20%, but it didn’t take into account the number of CT scans I’ve had. I’m sure my risk is much higher based on these statistics. What about you? How much exposure have you had?
Unless there has been a lot of education of the general medical population since 2004, most doctors won’t be able to assess your risk.

Empower Yourself

If you can’t get good answers to the questions above as Dr. Wachter says, “Just Say No”. That sounds like a slogan I’ve heard before. You as a patient do have the power to say, “No.” You need to do our homework and know your medical history in detail. You can’t have too much knowledge when it comes to your health. Most insurance companies have nurse hotlines to help you. They can anwser questions and may even do some research for you if you ask.

Images from: www.mesotheliomaz.info & www.evert.meulie.net

Patient-centered Medical Home

Patient-centered Medical Home (PCMH) is another concept of our current healthcare improvement efforts. Below is a portion of the history and abbreviated principles of PCMH from Wikipedia.

“IBM and other organizations started the Patient-Centered Primary Care Collaborative in 2006 to promote the medical home model.^[15][16] As of 2009, its membership included “some 500 large employers, insurers, consumer groups, and doctors.”^[16]

In 2007, the American Academy of Family Physicians, American Academy of Pediatrics, American College of Physicians, and American Osteopathic Association — the largest primary care physician organizations in the United States — released the Joint Principles of the Patient-Centered Medical Home.^[2] The principles listed were:

• Personal physician: “each patient has an ongoing relationship with a personal physician trained to provide first contact, continuous and comprehensive care.”
• Physician directed medical practice: “the personal physician leads a team of individuals at the practice level who collectively take responsibility for the ongoing care of patients.”
• Whole person orientation: “the personal physician is responsible for providing for all the patient’s health care needs or taking responsibility for appropriately arranging care with other qualified professionals.”
• Care is coordinated and/or integrated, for example across specialists, hospitals, home health agencies, and nursing homes.
• Quality and safety are assured by a care planning process, evidence-based medicine, clinical decision-support tools, performance measurement, active participation of patients in decision-making, information technology, a voluntary recognition process, quality improvement activities, and other measures.
• Enhanced access to care is available (e.g., via “open scheduling, expanded hours and new options for communication”).
• Payment must “appropriately recognize[s] the added value provided to patients who have a patient-centered medical home.” For instance, payment should reflect the value of “work that falls outside of the face-to-face visit,” should “support adoption and use of health information technology for quality improvement,” and should “recognize case mix differences in the patient population being treated within the practice.”

It is my understanding that several PCHM programs have been started throughout the country using federal grants. The focus has been on Medicare & Medicaid populations. I heard presentations on the progress of some of these initiatives at the IHI Forum I went to in December. These efforts require a major culture change and a tremendous amount of work for these organizations.

To learn more about the program go to the Patient-centered Primary Care Collaborative website.

From what I can glean the PCMH is trying to address many of the underlying problems of our medical system. I am very encouraged, but wonder how long it will take for changes like this to be the common way healthcare is managed in our country. My hope is sooner rather than later if the pilots produce to hoped-for benefits.

Patient Safety Efforts at Work for You

Patient safety is being addressed from many angles, but to those who have been harmed or have lost a loved one the work isn’t moving fast enough. It gives us all hope when we hear about the good things that are happening and the work being done.

We are all very familiar with Consumer Reports, a publication of the Consumer’s Union started by my husband’s uncle,   Colston E.Warne. They now have a website dedicated to health that is full of great information and you can receive a monthly newsletter which is filled with great information. We’ve been getting it for the last few years.

Ending Secrecy in Healthcare

In addition to these offerings they are working to expose patient safety issues through the Safe Patient Project - End Secrecy & Save Lives. They have a map of the US in the right hand corner of the Home page where you can find out what is going on in your state with regard to patient safety and medical errors.

They released a new report on March 31, 2011 that is eye opening:

Consumer Reports Poll Finds High Levels of Concern about Medical Harm & Support for Public Ratings on Hospital Safety     

A new poll released today by the Consumer Reports National Research Center found high levels of public concern about hospital-acquired infections and other forms of medical harm as well as support for making it easier for the public to find out how each hospital ranks when it comes to patient safety. Read more…

I urge you to explore these valuable resources.

Nurses Caught in Terrible Bind

Communication between patients and doctors and between doctors has been on my mind a lot lately as I work on my next book. Yes, I’m writing another book and it has to do with communication. So, when I saw the report Communication Breakdown Leads to Hospital Errors by Katherine Hobson on the Wall Street Journal Health Blog, I felt compelled to share it and my thoughts with you.

Here’s portion of the report – “According to a two-pronged survey of operating-room and critical-care nurses conducted by their professional associations and VitalSmarts, a global training and consulting firm, 85% of 2,383 nurses surveyed said they’d been in a situation where measures put in place to reduce errors –  including checklists or hand-off protocols — warned them of a problem that would have otherwise harmed a patient.

That’s the good news. The bad news is that 58% of the nurses said they’d been in situations where it was “either unsafe to speak up or they were unable to get others to listen.” Read the rest…

There is a lot of stress in workplaces these days. From my years in the corporate world, I know much of the stress is due to poor communication. But, no place is more dangerous to have barriers to communication than hospitals where lives are at stake.

Code of Silence & Hospital Errors

Unfortunately, a code of silence about medical errors has been part of the culture in hospitals for years. The behavior described in this report is no surprise. Doctors and nurses have been driven from jobs if they are seen as “squealers”.

I thank VitalSmart, training and consulting firm, for this report and for starting a public discussion on what has been one of the “elephants in the room” in medical care far too long.

We all need to understand what is going on in hospitals. We need to start demanding the causes of preventable and needless hospital errors are exposed and appropriate changes made. In November 2010, The Office of Inspector General for the U.S. Department of Health and Human Services released a report stating that 15,000 Medicare patients die a month from hospital errors. Did you hear about it? Was there an outcry in the media? What is going on in this country? The media reports about sick celebrities until we are sick of hearing about it, but 180,000 senior die a year and there is silence. I feel life is getting surreal. What about you?

Politics aside  – I don’t understand the logic in healthcare reform that adds people to a very broken system when doing do will only stress the workers further and most likely dramatically increase medical errors.

Image from: nursinglink.monster.com

It’s all in how the medical statistics are presented

Do you realize that a one in 300 chance of having a positive outcome can be presented as a 50% chance of having a positive outcome?

Reuters Health Information released an overview of a study today, Persuasive health information could be misleading that highlights the need to really understand the medical statistics being used before making decisions about your health. The same data can be presented in different ways – some more compelling than others.

Percent figures reflect the “relative risk of dying” whereas, the “actual risk of dying “is represented by the number of people who need to be treated for one person to be saved. The author of the article says the latter is more informative, but less compelling. See the article for the full explanation and examples.

The author says that both clinicians and patients were more swayed in their decision making by the impressive percentage numbers than by the more useful numbers. When I think of most of the study results I’ve heard about over the years and the ads for various drugs, the messages are presented in percentages. Both articles say that doctors are swayed and / or confused about the statistics, also.

The next time my doctor says that X percent of the time a person is better off doing  xyz procedure or taking abc drug I hope I have the presence of mind to ask about my actual risk before we decide together about what I should do. If he is confused or doesn’t know, unless it’s an emergency, I’ll opt for a clearer understanding before I decide.

How does this figure into the use of evidence-based medicine? I’d like some experts on the subject to weigh in…

As I was looking for an image to bring home the point I found the cover of this book and then discovered that  it is offered as a FREE download by the James Lind Library. I haven’t read it yet, but it looks as though it will explain this issue thoroughly.

Two other related titles of interest are also available as free downloads: Testing Treatments: Better research for better healthcare and Smart Health Choices: Making sense of health advice.

The four key questions at the heart of Test Treatments are:

1. How do we know whether a particular drug, therapy or operation really works, and how well?
2. How reliable is the evidence?
3. Are clinical trials truly unbiased?
4. And is current research focused on the real needs of patients?

The five key questions at the heart of Smart Health Choices are:

1. What will happen if I wait and watch?
2. What are my test or treatment options?
3. What are the benefits and harms of these options?
4. How do the benefits and harms weigh up for me?
5. Do I have enough information to make a choice?

If my instincts are right these books will be the most valuable health care books I’ll read this year. My thanks to the James Lind Library for making these books available.

Images from: phpc.cam.ac.uk & jameslindlibrary.org

Evidence-based Medicine Defined

A second relatively new term the medical world is using a lot these days that you need to know about and understand:  Evidence-based Medicine (EBM). As defined on MedicineNet evidence-based medicine is “the judicious use of the best current evidence in making decisions about the care of the individual patient. Evidence-based medicine (EBM) is meant to integrate clinical expertise with the best available research evidence and patient values.” Best available research evidence usually means that a course of treatment or set of symptoms are applicable in 80% or more of similar situations. More and more practitioners are relying on this evidence / statistics to make decisions for patients.

While this approach seems as though it can be very beneficial in helping patients especially since it is impossible for doctors to keep up with all of the latest developments in medicine, every good thing comes with potential down falls.

The Pareto Principle Reversed

When I think of evidence-based medicine I think of the Pareto Principle known as the 80/20 Rule, but it isn’t really the Pareto Principle because the numbers are reversed. In the business world the 80/20 Rule means that 20% of the resources (the vital few), whatever they are, produce 80% of the results or are considered the trivial many. Example: 20% of the salesmen make 80% of the sales. Business people use this principle regularly to figure out how to best leverage their resources for the most profit. But, with evidence -based medicine this logic is reversed. A certain plan works for most patients 80% of the time. The thinking is that more correct “things” will be done by following the statistic than is currently happening. Is this true? How much money will be saved and how many more patients will receive better care? The potential to decrease costs and have more accurate diagnoses and treatment decisions exists with this type of thinking, if you are in that 80% and the doctor uses his expertise and considers your situation along with the statisitcs.

But, what happens to the other 20% of patients who don’t fit the evidence? Are they misdiagnosed, given inappropriate treatment, inappropriate testing, subjected to pain and suffering? It all depends. If EBM is used properly and the doctor doesn’t go on auto pilot patients will have a good chance of receiving the care they need.  But, if clinicians turn their minds off and do things by the stats that work for the majority rather than considering patient history and circumstances, life gets scary for the patient – unfortunately many patients won’t even know it is happening. If you haven’t read the posts of my recent experience with test procedures using guidelines determined by statistics (Evidence-based Medicine Part 1 & Part 2), do so to further understand what I am talking about.

Joint Decision Making Needed

Remember in the first paragraph when I said, “Make decisions for patients.” This is where you come in. You must become knowledgeable enough about everything to do with your healthcare so that you can ask the right questions to know if you are in the 80 or 20% and make joint decisions with your doctor rather than have him or her tell you what to do.

Other questions that come to mind as I think about EBM are:

• Just as the business world heavily relies on 20/80 rule to make decisions, will doctors become so used to the 80/20 they forget to use their expertise and consider the individual’s particular situation?
• Older seasoned doctors who are used to relying on their expertise are less likely to fall into the stat trap, but what about younger doctors who haven’t had a chance to hone their expertise and are used to finding answers – to just about everything – on the Internet? Will they be too prone to rely too heavily on statistics ?  
• Will doctors be forced to use EBM by insurance payers because they think it will save money? What effect will that have on all patients?
• Will the potential savings of the 80% be offset by the problems of the 20% who may not be diagnosed correctly and experience complications? More importantly, would you want to be one of the 20%?

What do you think?

Images from: billyshall.com & cirrushealth.com

New Medical System Terms

Many new terms have surfaced lately in the medical community as people have begun the difficult task of improving the healthcare system and healthcare reform. In case you haven’t heard the terms, I thought I’d introduce them to you, tell you what they mean and see if your medical community has begun the implementation.

One of these terms is “Patient-centered care”. This concept is the foundation of most improvement work happening now. I was confused when I first started hearing this term. I thought medical care was all about the patient who is the center of their care and reason for the medical system in the first place. Without the patient there is no need for medical care. It took me quite a while to figure out why this was a new concept.

Medical literature studies and reports talk about the system becoming fragmented and depersonalized as it grew more complex over time. Depersonalization probably started when doctors began being trained not to become emotionally involved in their patient’s illnesses and it grew from there. It takes many forms. Among them, decisions made for the convenience of the schedule or the business instead of for the benefit of the patient or talking about the patient kidney in room 234, instead of calling him by his name.

Patient-centered Care Defined

The Institute for Healthcare Improvement defines it as, “Care that is truly patient-centered considers patients’ cultural traditions, their personal preferences and values, their family situations, and their lifestyles. It makes the patient and their loved ones an integral part of the care team who collaborate with health care professionals in making clinical decisions. Patient-centered care puts responsibility for important aspects of self-care and monitoring in patients’ hands — along with the tools and support they need to carry out that responsibility. Patient-centered care ensures that transitions between providers, departments, and health care settings are respectful, coordinated, and efficient. When care is patient centered, unneeded and unwanted services can be reduced.”

A lot of subtleties exist in this definition. Listen to Don Berwick to see what I mean.

Is this a description of your healthcare experiences? If it hasn’t been so in the past, have you started to see a shift in your care that looks and feels like this? I’d like to hear about your experiences. Did you know your healthcare experiences are not considered patient centered in today’s medical environment?

Image from: espine.com

Multiple Chronic Diseases Require “Whole” Patient Care

“…but right now, a patient may have a cardiologist, pulmonologists, endocrinologist, ophthalmologist, neurologist or a half dozen “-ists” without anyone having a particularly clear image of the whole patient — or what the patient wants.

The patient needs a “comprehensive evidence-based plan” that takes into account those multiple challenges and conditions. And the patient, or the family, needs to be involved in “self-care,” the home-based care and monitoring. And communication is key, but too often the current system makes communication difficult — and unprofitable. Good communication has to encompass not just a doctor and a patient (or his daughter-in-law), but all the doctors in and out of the hospital, the emergency department, rehab centers, mental health services, home health aides, social workers and anyone else in the picture.

Today, that’s not how the medical system works. And it’s not how doctors are trained.

We don’t routinely train our doctors, nurses and social workers to take care of people with multiple chronic diseases,” Boult said. “We train them to take care of one condition at a time.” Nor do we pay doctors to treat a bunch of complicated medical and social conditions at once. It’s easy for a physician to bill for a test or procedure, but he or she isn’t paid for making a phone call just to see how a patient is doing.”

This quote is from an article titled, “Cutting Medicare Cost for Complex Patients” published on February 3, 2011. The article discusses three programs being studied that aim to improve care and decrease costs for elderly patients with multiple health problems who see many healthcare providers. Read full article here…

This paints the picture of health care for most of the elderly. Family caregivers are exhausted as they try to learn, on their own, how to obtain the care their loved one needs and keep their life in order.

I have been involved in many webinars, read numerous weekly and research the latest efforts to improve care and reduce costs. One thing the improvement efforts have in common is that they are geared toward what the medical professionals can do “for” and “to” the patient. While one of the goals of these programs is to get the patient more involved in their care; as one study in this report found, it took three years to gain that involvement and to see the benefit of reduced costs. Patient education up front as to how patients and family caregivers can be involved in the care is missing. Earlier cost resudction is sacrificed.

Participatory Medical Care

Many patient advocates and activists are trying to change this, but we are small voices in the wilderness at this time. Some of us have come together in the Society for Participatory Medicine. Our goal is to find ways to improve care through better patient and doctor understanding of what “participatory” medical care really means and how to achieve it. Check us out and get involved. Emotional costs often take a bigger toll than financial costs on families affected.

Image from: imt.ie