Our Health Data Rights

My colleague, Alan Greene, has been in the lead with a group of professionals putting forth a declaration of health data rights and, as founder of eDoc, I am completely in support of it. He points out that more than 7 percent of abnormal tests results fall through the cracks, according to a study released today in the Archives of Internal Medicine. According to Alan, as quoted today in his blog: "Whether we use this power to track our family’s medications, BMIs, lead levels, vaccines, or allergies, by being more actively engaged I believe we can make better health choices, reduce costs, reduce errors, and enjoy better health. Too often, bureaucracy, old thinking, or paternalistic concerns keep people from having their own health data or from
having the courage to act on it. I believe this is about to change. On June 22, 2009, we released a Declaration of Health Data Rights a profound, simple statement that, among other things, we all have the right – the license – to take possession of a complete copy of our health data without delay and at minimal cost, in a computable form if our lab data or pharmacy records or growth charts or other health data exist in that form....This doesn’t mean that we won’t value physicians and others who have devoted their lives to a study of health, but it does mean that we will engage with them in a new and more effective way...I hear concerns from some doctors that patients shouldn’t have a set of keys: they won’t make safe drivers. And it would be dangerous, for instance, for patients to be able to get worrisome lab results or biopsy results without someone present to reassure them. As I’ve heard more than once, what if this led to suicidal behavior? Yes, I think it’s valuable to have support when getting bad news, but I also think the choice of whether to have support, when, and what kind belongs to the person getting the news. Our routine of keeping people in the dark until we are ready for them to get information is too a high price to pay. What if people misinterpret or misuse their own health data in less extreme situations? No one has a greater interest in an individual’s health than that individual and their loved ones. Armed with up-to-date data, they are free to consult experts and other resources as they wish. Our health is our responsibility, and having our own data is essential to taking charge.

The Declaration of Health Rights is simple, clear, and self-evident – but I expect the implications of this Declaration will continue to unfold over the years to come What if people misinterpret or misuse their own health data in less extreme situations? No one has a greater interest in an individual’s health than that individual and their loved ones. Armed with up-to-date data, they are free to consult experts and other resources as they wish. Our health is our responsibility, and having our own data is essential to taking charge...One natural extension of this will be people’s ability to order lab tests for themselves. Of course, insurance will only pay for the tests if the situation warrants, but if your child has a sore throat and a fever, why shouldn’t you be able to order a strep test? Or if you’re a parent in your thirties or forties and have high cholesterol, why shouldn’t you be able to have your child’s cholesterol levels checked? We live in a country that allows people to smoke cigarettes and carry guns. Having our health data is far less dangerous and carries with it the possibility of great good. Let’s shake hands; let’s pick up our keys.

To learn more about the Declaration of Health Data Rights, click here.

To become a signer of the Declaration, click here."

Thanks, Alan, for stating this so well. I couldn't do it better than you, so thanks for allowing me to quote you!

Recent Heart Attack? Consider Cardiac Rehab!

Cardiac rehabilitation, or guided exercise under direction of a physical therapist, is a valuable yet underutilzed therapy for patients suffering a heart attack. Importantly, in those patients with ongoing risk factors related to obesity and insulin resistance/diabetes, aggressive cardiac rehab was recently shown to be especially effective.

Specifically, two groups of patients were enrolled in high intesity (5-7 days weekly of 45-60 minutes exercise) versus standard (3 days weekly of 25-40 minutes exercise).

High intensity patients lost more than twice as much weight over 5 months as standard patients (18 pounds vs. 8 pounds and had significantly greater reductions in 2 major cardiac risk factors -- waist circumference and insulin resistance. At 1 year, both groups had gained a couple of pounds over 5-month weights, but total body-fat percentages in the aggressive group remained significantly lower than initial readings. Other cardiac risk factors changed too - including decreased insulin resistance, increased HDL (good) cholesterol, and decreased measures of insulin, triglycerides, blood pressure, plasminogen activator inhibitor-1, and the ratio of total to HDL (good) cholesterol.

Overall then, patients who took advantage of their motivation after heart attack to aggressively address exercise goals reduced potential risk factors and set the tone for a healthier life. If you have been a heart attack sufferer, ask your doctor about cardiac rehab. If you are not a heart attack sufferer but have risks, ask your doctor about trying a program like this on your own.

Questions and comments welcome as always!

Problems with your “Z’s”: New research on treatment of persistent insomnia – help is more than just medication.

The May 20th issue of JAMA (Journal of the American Medical Association) includes an article on treatments for persistent insomnia. Insomnia is the most common of all the sleep disorders and is described as having problems with the ability to gain sufficient sleep or to feel rested and characterized by difficulty getting to sleep or staying asleep. Insomnia may be situational, recurrent, or chronic. Most people know if they have problems with sleep, and most of us have had personal experience with occasional bouts of insomnia.

Lack of adequate sleep over time, or persistent insomnia, can have a very big impact on daily functioning; it will lower your quality of life and can contribute to various health and emotional problems. When untreated, insomnia can also contribute to major depression and other physical problems. When you get behind the wheel with not enough quality sleep, you not only put your life at risk, but those around you as well. A large number of auto accidents are attributed to driving while drowsy. Although it may be tempting to use alcohol as a sleep aid, it will work in the opposite way and create insomnia and other health-related issues as well. And…of course this will not help your driving either!

Here are some sleep-promoting tips that can work well to help you get into a healthy sleep routine:

1. Maintain a regular bedtime and awakening time schedule including weekends. Get up about the same time every day, regardless of what time you fell asleep.
2. Establish a regular, relaxing bedtime routine. Relaxing rituals prior to bedtime many include a warm bath or shower, aroma therapy, reading, or listening to soothing music.
3. Sleep in a room that is dark, quiet, comfortable, and cool; sleep on comfortable mattress and pillows.
4. Use your bedroom only for sleep and sex. Have work materials, computers, and TVs in another room.
5. Finish eating at least 2-3 hours prior to your regular bedtime.
6. Avoid caffeine within 6 hours; alcohol & smoking within 2 hours of bedtime.
7. Exercise regularly; finish a few hours before bedtime.
8. Avoid naps.
9. Go to bed only when sleepy. Lay in bed only for sleeping, not for work or watching TV.
10. Designate another time to write down problems & possible solutions in the late afternoon or early evening, not close to bedtime.
11. After 10-15 minutes of not being able to get to sleep, go to another room to read or watch TV until sleepy.

This latest research in JAMA shows that CBT (Cognitive Behavioral Therapy), a structured form of psychological treatment that focuses on modifying thoughts and behavioral patterns, was effective for treating persistent insomnia. The addition of a sleep medication to CBT treatment like zolpidem (generic name for a prescription sleep medication) produced some benefits, although such benefits were modest to treatment outcomes. Such findings suggest CBT may provide an added benefit in treatment of insomnia.

Since you are awake anyway, sign on and leave a comment about how your sleep is going. All comments from those who are sleep-deprived and others are always welcome. Sweet Dreams!

Tips for Vegetarians

Some people decide to become vegetarians. There may be a personal philosophy against killing animals for food, religious convictions or a desire to eat a very healthy diet. There are different types of vegetarians. All avoid animal products, but some will eat dairy foods (Lacto-vegetarian), eggs (Ovo-vegetarian) and others will eat none of these (Vegan). Some vegetarians will eat fish (Pesco-vegetarian). Being a healthy vegetarian and getting all essential nutrients in the diet takes knowledge and effort. If done right, studies show that vegetarians are leaner, have a lower blood pressure, lower cholesterol and lower blood sugar.

Vitamin B12 is naturally only present in animal foods. Since it is added to fortified grains and cereal, vegetarians can still get B12 from food. Adequate iron is hard to come by for menstuating female vegetarians. Spinach and other greens do have some iron but it is not well absorbed. B vitamin and iron supplements may be taken to ensure good nutrition. Protein is the building block of most tissue, and getting all of the essential amino acids (what constitutes protein) from vegetables takes knowledge and a willingness to eat a variety of foods, especially beans, brown rice, nuts and greens.

As our global population continues to grow and our "carbon footprint" is measured, it is likely that more people will become vegetarians. This will be a good thing as long as a rich and diverse vegetarian diet is followed.

Participatory Medicine will Change the Health Care World as we Know it!

One of the reasons eDocAmerica exists is to empower patients to take more control of their own health care. A wonderful group of people, patient advocates, physicians and other professionals alike have created a broad platform for this "e patient" movement, called Participatory Medicine. This group was originally assembled by Tom Ferguson, MD, an esteemed colleague who died after a courageous battele with Multiple Myeloma, and has since continued to meet. They created an excellent blog site, e-Patients.net that anyone who is interested in this subject should visit regularly.

Participatory medicine is a cooperative model of health care that encourages and expects active involvement by all connected parties (healthcare professionals, patients, caregivers, etc.) as integral to the full continuum of care. The ‘participatory’ concept may also be applied to fitness, nutrition, mental health, end-of-life care, and all issues broadly related to an individual’s health. This group is forming a society, the Society of Participatory Medicine and, soon, there will be a web site where interested parties can join and "participate" in the discussion. The society's first president is Alan Greene, MD, author of popular Pediatric website Dr.Greene.com. In addition, the Society is founding a new journal, the Journal of Participatory Medicine. The Journal will bring together the best available evidence and examples of participatory medicine to:
a) Make a robust case for its value to people – sick or well –, advocates, and health professionals
b) Serve as a meeting place and rallying point for those at the leading edge of participatory medicine
c) Engage, inform and include those who have been involved in, or practicing, participatory medicine. We aim to advance both the science and practice.

The mission of the Journal is to transform the culture of medicine to be more participatory; and we believe that doing so, as the saying goes, will take a village – perhaps even a large metropolitan area! JPM constitutes a major investment of time and talent in community development. The journal will be entirely electronic, using the Open Journal System platform of online publishing. Yours truly, along with Jessie Gruman, the founder and president of the Center for Advancing Health (CFAH), an independent, nonpartisan Washington-based policy institute funded by the Annenberg Foundation, the W.K. Kellogg Foundation and other foundations, will serve as Co-Editors in Chief of this new journal. We expect to publish our first issue of the Journal sometime in the fall of this year.

This is an exciting group of talented, engaged people who have the capacity to create something that will make a major difference in our health care system. eDocAmerica has a powerful collaborative opportunity here to participate with other key individuals and groups to help change health care!

Your comments and opinions are always welcome...

Is it Time to Rethink Aspirin?

Aspirin? - Yes, I should take that to prevent heart attack and stroke, right??
Well......perhaps. A new study (called a meta-analysis), the largest comparative trial of its kind, shows that being overzealous about aspirin use for prevention of initial heart attack and stroke may be unsubstantiated.

Specifically 95,000 subjects were evaluated in this series, producing 1671 strokes and heart attacks in the aspirin group and 1883 in the control group. Aspirin was associated with an absolute reduction of 0.06% heart-related events per year. Correspondingly, aspirin did not significantly reduce ischemic (non-bleeding) stroke risk, but researchers noted a borderline-significant increase in hemorrhagic (bleeding) stroke. Aspirin also increased the incidence of bleeding outside the brain. Overall, aspirin was not associated with a significant reduction in vaascular death.

What does it mean? The advantages of aspirin in low risk patients are scant. As cardiovascular risk factors (like smoking, high cholesterol, high blood pressure, diabetes, family history of early stroke/heart attack) pile up, aspirin gains a bit more support, though there is a modest associated bleeding risk.

We will be following this data and it's analysis further. In the meantime, it may be reasonable to discuss things with your doctor, or perhaps cut aspirin dosing to the appropriate lowest dose (81mg in most patients).

Want the original? See Collins R et al. for the Antithrombotic Trialists’ (ATT) Collaboration. Aspirin in the primary and secondary prevention of vascular disease: Collaborative meta-analysis of individual participant data from randomised trials. Lancet 2009 May 30; 373:1849. We will post the appropriate link after publication to make it easier.

Overcoming your Headaches

One of our most revered faculty members, Lee Archer, MD, a neurologist, provided a copy of the handout he gives to his headache patients. With his permission, I adapted it for use with my own patients. I thought it was so good that I asked him if I could publish it on my blog so that others could benefit from his advice.

Headaches are incredibly common and usually frustrating for providers. It has become increasingly evident that chronic or frequently occurring headaches are often virtually impossible to identify as either "migraine" or "tension" headaches and often simply are called "chronic headaches". Treatment often becomes a revolving door of trying new medications that sometimes work, but more commonly don't. And, even worse, many headache patients gradually simply become dependent on addictive pain medications just to try to cope with their often daily discomfort.

But, there are some really basic things about dealing with chronic headaches that we should never forget to try. So, without further ado, here is his advice:

Ten Steps to Overcoming Your Headaches

There are some things that everyone can do to help their headaches. There are a number of things you can besides just take medication to help their headaches. If someone follows all of these directions, the need for prescription medication is often dramatically reduced if not eliminated.

1. First and foremost, taking pain medication everyday is definitely not a good idea. Daily pain medication tends to perpetuate headaches. This is true for over-the-counter medications like Excedrin and BC powders, as well as prescription medications like Fiorinal, Midrin, and “triptans” like Imitrex, Zomig, Relpax, Frova, etc. Exactly why this occurs is unclear, but it is a well established clinical finding. Anyone who takes pain medications more than twice a week is in danger of perpetuating their headaches. Occasional usage of pain medications several times in one week is permissible, as long as it is not a regular pattern. For instance, using pain medication several days in a row during the perimenstrual period is certainly permissible.

2. Regular exercise helps reduce headaches. Exercise stimulates the release of endorphins in the brain. These are chemicals that actually suppress pain. I encourage people to aim for at least 20 minutes of aerobic exercise (like walking or swimming) five days a week if not daily. In addition to helping reduce headaches, this also will prolong your life because of the beneficial effects on your heart.

3. Stress reduction is a definite benefit in reducing headache frequency and severity. Headaches are not caused by stress alone, but can make most headaches worse. There are no easy answers for how to reduce stress. If it is severe, we can consider referral to a therapist for help.

4. Too much or too little sleep can trigger headaches. Pay attention to this, and note whether or not you are tending to trigger headaches from sleeping too little or too much. People differ as to how much sleep is “right” for them.

5. Caffeine can precipitate headaches. I encourage patients to try stopping caffeine altogether for a few weeks, and we can decide together whether or not caffeine might be contributing. Abruptly stopping all caffeine can trigger headaches, too, so try to taper off over a week.

6. NutraSweet (aspartame) can cause headaches in some people. If you are drinking multiple servings/day of beverages containing NutraSweet you might consider trying to stop that, and see if your headaches respond.

7. There are some other foods they may trigger headaches in some people. Usually people learn this very quickly. For instance, red wine will precipitate migraines in many people, and chocolate, nuts, hot dogs and Chinese food triggers headaches in certain cases. I generally don’t advise omitting all of these foods, unless you notice a pattern where these foods are causing headaches.

8. If I give you a prophylactic medication for headaches, you should take it daily, as prescribed. If you have trouble tolerating it, please let me know and we can consider using something else. No prophylactic medication works in every patient with headaches. Generally, each of the medications works in only about 60% of people. Therefore, it is not uncommon to need to try more than one medication in any given patient. We must give any of these medications at least four to six weeks to work before giving up on them. It generally takes that long to be sure whether or not a medication is going to work.

9. Keep a calendar of your headaches. Use a standard calendar and mark the days
that you have a headache, how severe it is on a scale of one to ten, what you took
for it and how long it lasted. Also note anything that you think could have
precipitated it. By keeping this over time we can tell if our efforts
are helping.

10. Riboflavin (vitamin B2) 400mg daily helps prevent migraines in many people. It
comes in 100mg size tablets, so you will need to take four of them each day. You
can add it to anything else we try. You do not need a prescription for it.

Do you have chronic headaches? If so, I challenge you to apply these ten principles, then come back and provide a comment on this blog post!

Thanks and good luck!