Posts made in June 2012

How e-Patients Should Navigate the System to Get the Best Possible Treatment for Breast Cancer

I was recently diagnosed with breast cancer for the second time and exactly five years to the day after my first occurrence. Although I do not usually discuss personal issues on this blog, I hope my experiences and approach might help others as they navigate the health care system to get the treatment needed.

Both incidences of cancer for me were detected very early and were small tumors . Additionally, these cancers were separate incidences, not a cancer that had metastasized. Since I have written the book on patient empowerment, engagement and education, I can say with confidence that if you approach this diagnosis well informed, suitably engaged, and with a positive attitude, you will make better decisions that will result in a better outcome. So here’s what I have to offer by way of advice and information:

First rule of thumb for every woman, particularly those over the age of 40, or those with a history of cancer in the family, is be diligent about self-examination and get an ANNUAL mammogram. A mammogram is an x-ray of the breast. Modern medicine has been doing mammograms for 43 years.The machines are designed to use very low levels of radiation. Strict guidelines insure that mammogram equipment is safe so that the level of radiation does not increase the risk for breast cancer. To put it in perspective, if a woman with breast cancer undergoes radiation therapy, she will receive a total of approximately 5,000 rads. If that same individual has yearly mammograms beginning at age 40 and until she is 90, her total radiation exposure will be between 20-40 rads. The American Cancer Society recommends that women age 40 and over should have a screening mammogram every year and should continue to do so for as long as they are in good health. Today’s digital mammogram machines detect most abnormalities in the breast so be certain to have your mammogram at a facility that has digital capability.

http://www.cancer.org/acs/groups/cid/documents/webcontent/003090-pdf.pdf

The American Cancer Society also recommends that women in their 20s and 30s should have a clinical breast exam as part of a periodic health exam by a health professional at least once every three years.The goal of these screening exams is to find cancers when they are small, still confined to the breast, and before they start to cause symptoms. Breast cancers that you find yourself tend to be larger and are more likely to have spread. This has a lot to do with your prognosis and is why breast self-examination, (BSE), starting around age 20 is so important. ( http://www.cancer.org/)

Web sites where you can get excellent instruction on how to do a breast self exam include

http://www.breastcancer.org/symptoms/testing/types/self_exam/

http://www.nationalbreastcancer.org/about-breast-cancer/breast-self-exam.aspx

http://www.youtube.com/watch?v=Ple5EJHmwqM

If you are called back for a second set of mammograms, as I was, do not panic and do not procrastinate. It is very important to follow through.At my call back for this occurrence I was sent immediately to ultrasound and the radiologist located a small but definitive tumor pretty quickly. By then I kind of knew what was ahead.

Two days later I had a biopsy that confirmed, a small cancerous tumor called a lobular carcinoma. This was a different type of cancer than the first round which was a ductal carcinoma in situ (DCIS). I learned from asking the doctors that both of these cancers types are estrogen positive and respond well to treatment.

Never quite satisfied that I had all of the information I needed, I did a lot of Internet research, talked with my primary care physicians and other individuals who were knowledgeable about breast cancer to find out as much as possible about what I had and what I was facing.

Armed with all the necessary information, I met with my oncology surgeon. Lucky for me she is the same physician whotreated my first cancer. She is a doctor who knows just how to communicate with her patients and explain everything that is happening in great detail and with great reassurance. As a result I did not need to seek second opinions or look for a doctor who might be the best surgeon for me.

If you do not have that health care team in place that you have complete confidence in, however, then you should do some research to determine who to seek for a second opinion. The best way to find information on doctors is via other professionals, including the opinions of your primary care physician or from your friends and relatives. There are also web sites where you can find extensive information and ratings on doctors and hospitals. Among the questions you want to consider are: how often do they do this type of surgery, and what is their quality and safety record,

http://doctor.webmd.com/physician_finder/results.aspx?

http://www.healthgrades.com/

I had my surgery, a lumpectomy with a sentinel node biopsy and am now recovering from that. In a few weeks, I will meet with my full team: oncologist, oncology surgeon and radiation oncologist and determine next steps which might include medication and radiation.

Although cancer is a common problem, particularly for people over the age of 40, when it happens to you it is frightening. You could become depressed, angry,and sad. However, if you remain positive, approach your diagnosis with a fighting attitude, and find a team of physicians that you have confidence in, you will be so much better off.

Patient Engagement, What Is It Really About?

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In 2008, the National Quality Forum (NQF) declared patient and family engagement to be one of the six national priorities to eradicate disparities, reduce harm and remove waste from the health care system in the United States.

www.qualityforum.org/Topics/Patient_and_Family_Engagement.aspx

This year, at their annual conference and membership meeting, in May 2012, they once again focused on patient engagement, insisting that we must give have more than lip service to the idea that patients must be truly involved in their care. At this meeting patient engagement was defined as an environment where providers must listen to patients, understand patient preferences, incorporate these preferences into the decision-making process and provide health care that is patient-centered.

http://www.auanet.org/eforms/hpbrief/view.cfm?i=1009&a=2472

The NQF is not the only group to focus on patient engagement.It seems that patient engagement is a current hot topic. One of the provisions in the Health Care Reform Bill would eliminate co-pays for all preventive care for patients of all ages.The bill also mandates that along with CMS, where at the CMS web site, patients can find comparisons of individual physicians based on quality and patient experience metrics, that the States develop patient web sites that provide comparisons of private insurance plans. This puts information that patients need to make critical health decisions directly into their hands.

Wrapping our thoughts around the concept of patient engagement is not easy. There are many definitions: some that put the onus of engagement on physicians, while others contend that it is the patient who needs to become proactive and take steps to make personal health and lifestyle decisions that directly affect their outcome, including:

Patients engaging in a model of clinical partnership sharing the power and responsibility for treatment decisions with health care providers
Patients having a voice in selecting their particular health care payment plan: (Consumer Directed Health Plans) including health savings accounts, health reimbursements accounts and flexible spending accounts
Patients participating in governance as working members of hospital boards of overseers, government advisory groups and patient advocacy organizations.

In e-Patients Live Longer, I provide a very specific portrayal of what a patient must do to engage and become the master of their health care. I talk about patients taking charge by thinking through how to most effectively communicate with their providers, showing up for their annual exam with a well thought out list of questions; initiating email communication with their doctors. registering and using a patient portal (if one is available) to do their referrals, make appointments, renew medications, get their labs and send messages to their . doctors. I discuss in-depth the importance of how individuals who have chronic conditions can monitor those conditions and send daily or weekly reports to their providers; how they can use their smartphones to download healthcare apps that are useful, perhaps critical in an emergency; how they must become diligent about their own safety in all medical settings; how they are responsible for medication adherence; how they must become more tuned into their health care payment plans and make good decisions based on what they can afford to pay for all of their health care needs.

What patient engagement really boils down, to is not a patient in isolation who reads about health issues on the Internet, downloads health apps on their smartphone, or uses the hospital’s patient portal; nor is it a physician who implements one of the many patient engagement systems that help achieve better metrics for chronic care patients. It is a patient-centered collaborative process that involves both the patient and the physician who put their heads together to share decision-making and find the best information and treatment solution that will lead to better long-term outcomes.

Chronic Disease Management,It Is Up To You!

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According to the latest figures, more than 120 million Americans have one or more chronic illnesses.There are many ways to manage chronic conditions.Direct patient involvement is critical.In my book e-Patients Live Longer, reviewed recently by diabetesmine.org, I make clear that patients must engage with their health care providers and take charge by using the technology tools such as email, e-visits, smartphones and patient portals to communicate with doctors and nurses;they must access the Internet to find appropriate resources and social networks; they must use telemonitoring devices to track their vitals on a daily basis and send that data to their physician’s office for review.

Patient self management is a key component of effective chronic care and will result in improved outcomes if done properly. There are five steps in the process of patient self managements: collection of data, transmission of data, evaluation of the information, notification between the physician’s office and the patient and execution of the intervention recommended.The process depends on accurate, complete timely information, and on the ability of the patient to deal with the symptoms, treatment, physical and social consequences, and lifestyle changes that the condition requires of the individual.

Patient self management depends on a collaborative, cooperative agreement between the patient and the physician, and the deployment of a chronic disease management system (CDMS) which focuses on preventive care. The physician must support patient self management by providing the education that the patient needs to engage,and recommendations for the appropriate point of care devices such as weight scales, glucometers, implantable cardioverter defibrillators, peak flow meters, thermometers, stethoscope. pedometers, blood pressure monitors and other wearable and peripheral tools now on the market. Many of these devices are reimbursed by Medicare, Medicaid and other insurance payers.

The implementation of electronic health records is a major change factor for both patients and providers in helping with the management of chronic illness.These records which document entire patient encounters and enable both patients and physicians to access real-time patient information, provide benchmark data that is current, accurate and fosters evidence-based medicine for better overall short and long-term care.

So what can the patient do to insure that your chronic condition is properly monitored and you are getting the best care possible?

Put yourself in charge and become an empowered, engaged patient who understands your disease, engages with others who have a similar condition, and comes to a medical appointment prepared with questions you need answered,.

Seek out resources. There are many community-based and non-profit organizations that offer patient education and support

Take a class on management of your specific condition – offered through community organizations, hospitals and health clinics

Engage in healthy activity such as exercise, yoga and proper nutrition

Talk to your doctor

By 2020, the U.S. Department of Health and Human Services projects that there will be 157 million individuals with chronic conditions. That number is expected to increase by one percent per year between 2020 and 2030 to 171 million. A large portion of these individuals develop chronic conditions because of our unhealthy eating habits.What this means is that we have the power to change to a healthier lifestyle and with a little luck ,many of us can avoid these chronic conditions.