Continuity of Care, It Takes an Empowered Patient To Make it Happen

Jane, who is 53 and lives in a rural community, is diagnosed with breast cancer spotted on her annual mammogram. Her primary care physician (PCP) refers her to a cancer center two hours away from her home for further screening. The doctors there decide that Jane needs surgery, followed by chemotherapy which will be done at the cancer center. Prior to visiting the cancer center, Jane is instructed to collect all of her medical records, including those held by her primary care physician, gynecologist, and the x-ray films that are filed at her local hospital. With the assistance of her PCP, Jane creates a personal health record that includes her family history of breast cancer, her own medical history and other scanned images. She shares the PHR with all of her doctors at the cancer center who also provide her with the surgery and pathology reports and specifics on her treatment. Thus, both her local doctors and the physicians from the cancer center are able to follow her progress and have all of the informtion on her treatment.

Patients are increasingly seen by a wide array of providers in a number of different locations, often raising concerns about fragmentation of care. When patients are most ill and need to be hospitalized, they are seen, not by their PCP who knows them well and who they trust, but by hospitalists and specialists who they have often never met. The way the system is now structured, the level of acuity of hospitalized patients has gone up drastically because insurance companies are increasingly refusing to pay for patients with lesser illnesses to be treated in the hospital. The hospitalist, who has day by day experience with in-patient care becomes the lead doctor. 

According to the American Academy of Family Physicians, it is an obligation of physicians to provide continuity of care to their patients in all settings, both directly and by coordination of care with other health care professionals. Continuity implies a sense of affiliation between patients and their practitioners and the passing off of all necessary information..

http://www.aafp.org/online/en/home/policy/plicies/c/continuityofcaredefinition.html

When we think of continuity of care, we think of insuring that information is available at the point of care. But continuity of care is more. There are three facets: information continuity, management continuity and relational continuity in a care environment where patients and physicians collaboratlvely work together to deliver effective health care. This care must be coherent, connected and consistent. Information continuity means that all of the patient’s medical history, conditions, treatments and related data are available at the point of care. Management continuity means that there is a consistent approach to treatment. This is particularly important in chronic or complex diseases that require management from several providers who could potentially work at cross purposes. Plans and care protocols must be shared and agreed upon and ideally one gatekeeper (usually the PCP) oversees the patient and keeps all of the pieces in order. Relational continuity refers to a sustainable therapeutic relationship between patients and one or more providers and insures that bridges between past, current and future providers are in place.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC274066/

The situation where a patient who is hospitalized does not regularly see his or her PCP but is overseen by a hospitalist who the patient has not personally met, is just one example of how continuity of care is threatened and interrupted. Another example results from physician groups who rotate daily hospital rounding so the patient sees a different doctor every day. This makes patient care difficult since the doctor does not have the benefit of seeing what the patient looked like the day before and therefore does not have an essential benchmark to determine whether the patient is better, worse or unchanged.

Continuity of Care records, (CCR) developed jointly by ASTM International, the Massachusetts Medical Society, Health Information Management Systems Society (HIMSS) and the American Academy of Family Physicians, are intended to improve continuity of patient care, eliminate medical errors and assure that at least a minimum standard of health information is transported to a new health institution or physician with the patient. The CCR, which only provides a snapshot in time, includes a standard set of information that is organized, transportable and can be in electronic or paper format. It enables each provider that the patient sees to easily access information outlined in the record and update the information when the patient goes on to see someone else.

Although the creation and maintenance of a CCR is generally left to a patient’s team of doctors, overseeing continuity of care is truly in the hands of patients. Not one else but the patient can be sure that information, continuity, management continuity and relationship continuity is maintained. and a part of the health care that they receive. Because we all have so many doctors involved in our care, it takes an empowered patient to assume the responsibility for insuring that the CCR or an equivalent personal health record is available at the point of care; that the care team knows the details of the case; and that medical decisions are coherent, consistent and communicated ..

User Friendly Medical Devices Could Alleviate Medication Non-Compliance

In my last blog post I noted that one-third to one half of all patients do not take medication as prescribed and up to a quarter never fill their prescriptions at all. This non-compliance with prescribed medication costs the US health system an estimated $290 billion annually. These costs are associated with expenditures for unnecessary hospitalizations, medical procedures, physician visits and treatments. Despite this staggering number this is just a starting point as the numbers quoted do not capture such costs as lost productivity and deterioration in quality of life. I put the blame for this non-adherence on the high, unaffordable cost of medication, the fact that people are forgetful and neglect to take their medications and the fact that often patients do not understand the reasons why following instructions about when and how to take medication is so important.

However, there is an additional  reason why people often do not take their prescribed medication properly and that is because the devices that deliver the medication are not designed in a way that makes them easy to use. In fact ,some devices are so poorly designed the patient cannot administer the medication at all.

Cambridge Consultants conducted a study that found a direct correlation between patient adherence to a drug regimen and the design of the drug delivery mechanism. The 240 diabetic patients who participated in this study indicated that they did extensive research on drug delivery devices that they would be using daily, and made their choices, not necessarily based upon their physician’s recommendation, but on their own perceptions about how the device delivered their medication. These respondents almost universally agreed that they would be willing to pay more for a device that is more user friendly and efficient.

A parallel study conducted by Cambridge Consultant of 100 health care professionals also concurred that the usability of a medical device impacts patient compliance with the medication therapy.,

http://www.cambridgeconsultants.com/print.php?print=news_pr296

The design of medical devices is regulated by the FDA , although the system is far from perfect. It has been a long road to institute regulations and standards that require manufacturers of medical devices to design in usability, design out usage errors, and provide documentation that is user friendly. By no means are we there yet.

The packaging of medication in containers that are safe and tamper secure, while at the same time enabling the average, possibly  elderly patient to easily access the medication is no easy task.

Over time this problem is going to become more complicated as the increasing numbers of individuals with chronic conditions use a variety of newly developed home monitoring devices and medication delivery systems, many of which will be based on a smart phone platform. It is important that patients have the right tools to manage their health conditions and medications. This will only happen when patients raise their  voice  and express their concerns so their health care providers  will  prescribe medications that patients completely understand and can use without a lot of challenges.

Did I Take My Pills Today?

One-third to one-half of all patients do not take medication as prescribed, and up to one-quarter never fill their prescriptions at all. According to the New England Healthcare Institute, (a health policy research organization focused on enabling innovation in health care.) medication non-adherence costs  the US health system an estimated $290 billion every year.

http://www.nehi.net/news/press_releases/169/nehi_proposes_strategies_for_promotingbetter_medication_adherence

This non-compliance regarding medication is not a new story. In April 2007, I wrote a blog where I pointed out that not taking medication properly was the cause of more than 50% of medication- related hospital admissions. A study of 39,000 patients and 335 primary care doctors by the Consumer Reports National Research Center, published in the February 2007 in Consumer Reports, noted that doctors’ number one complaint about patients is their failure to follow advice and adhere to a treatment regimen, which results in the high numbers of people landing in the hospital or back at a doctor’s office with the same complaint that they brought to their physician days or weeks earlier.
http://healthcarebasics.blogspot.com/2007/04/take-pillcall-me-in-morning-why.html

A new study, which focuses on four chronic conditions, found that patients who regularly adhered to their prescription regimen significantly reduced their total health care spending and lowered the number of emergency room visits and the number of days spent in the hospital. Specifically, adherence reduced average annual health care spending by $7,823 for patients with congestive heart failure, $3,908 for hypertension, $3,756 for diabetes, and $1,258 in patients with high cholesterol according to the article.
http://www.phrma.org/media/releases/new-study-finds-adherence-medicines-leads-lower-health-care-costs

There are three  reasons why people do not follow directions and take medication prescribed by their physicians:

1. Cost – many people, particularly those with chronic conditions who are on several medications come to a point where they have to make budget decisions and the pills are among the first things to go when money gets tight. The solution for these individuals lies not with changing their behavior but with the system. We have to find a way to bring down the cost of medications and co-payments to affordable levels so people can continue to take their medications . There have been several proposals that advocate paying people a financial incentive to comply with prescribed treatment such as lowering co-payments or creating incentives which reward people with cash if they comply.  To achieve a lasting solution, however, health insurers must begin to work with pharmaceutical companies and carve out plans for lowering the cost of some medications, as well as subsidizing \ individuals who cannot afford to pay.

A study funded by Aetna and the Commonwealth Fund, found that eliminating out-of-pocket costs for secondary prevention medications for patients after a myocardial infarction resulted in modest increases in adherence and improvements in some outcomes. This randomized trial showed adherence was roughly 4 to 6 percentage points higher among patients whose health insurers waived co-pays, than among those who continued to pay for prescriptions. Although these are not large percentages, it is good start toward making long term medication affordable to people with serious conditions. http://www.medpagetoday.com/MeetingCoverage/AHA/29648

2. Forgetfulness There are a large number of people who simply forget to take their medications either because they are too busy or they have memory lapses. The good news is that there are new systems with alarms available that remind patients when it’s time to take their pills - some even incorporate data collection to confirm that pills were taken on a regular basis. Devices like MedSignals,  Vitality Glo-Caps, and Dosecast, an app for the iPhone, IPad, iPod and iTouch that thelps you to remember when to take your medicines each day are examples.  Dosecast will even let you know if you have taken your last dose and if you are due for a prescription refill.

3. Education – patients frequently walk away from their visit with their doctor and have no understanding of why a prescribed medication is important and what will happen if they do not follow the treatment. Although there are isolated examples where physicians and pharmacists have worked together to develop effective programs to help people understand the purpose, potential side effects and why, using and completing a medication treatment is the only way the patient will recover, these coooperative programs are too few. As a result most patients are not given enough information and many opt not to refill their prescriptions. or they  self diagnose and determine that a drug is ineffective for them so they stop taking it. There are also the individuals who have difficulty swallowing their pills, or difficulty opening their containers, so they get frustrated and stop using their pills.

What can the patient do to take responsibility for medication adherence?

First and foremost, patients must speak up and question their providers about all of their medications and be sure that they completely understand why they are necessary, how to take them (in what dose and when), and the potential side effects. 

Patients who are still confused about a medications should talk with their pharmacist for further clarification.

Patients who have difficulty remembering to take their medications need to find one of the many medication reminders that are inexpensive  and available at the pharmacy,or free on many smartphones.

Patients who have difficulty opening the bottles should talk with their pharmacist who can supply bottles that are easy to open.
Patients who have difficulty swallowing should talk with their physicians who can prescribe substitute medications that may come in liquid form or who can suggest easier solutions for swallowing the medications.

Empowered patients do not leave these matters to chance or ignore the potential consequences.  They seek assistance and confirmation to make sure that they stay on track..

Personalized Medicine and Participatory Medicine Intersect

Since the time that the Human Genome Project was completed in 2003, gene sequencing technology has moved rapidly, becoming less expensive and therefore more available. In the very near future the cost of doing a whole genome sequencing will be under $1,000 and affordable to many individuals in the mainstream. What this means is that physicians will be able to tailor medical treatment to the individual characteristics of each patient, based on their unique molecular and genetic profile that indicates whether or not they are susceptible to certain diseases.

 

This will help physicians determine which medical treatments will be safe and effective for each of us and which might be counter. It means that individuals will have to become even more engaged in their health care, because they will be faced with the dilemma of having to make decisions about their life and life style based on knowledge about what they might be physically dealing with, as they age. It is in the nature of humans to want knowledge and information, especially about themselves. Ultimately many individuals, who can afford to, will make the decision to do whole gene sequencing.

 

There are already studies where findings based on genetic variations are initiating changes in options and treatment approaches. For example, researchers, using gene sequencing,  have learned that not only does lung cancer vary in patients based on the specific genes that contribute to its onset and progression,

 

http://www.cancernetwork.com/lung-cancer/content/article/10165/1556149/

 

In cardiac disease as well, genetic tests which detect variations in the way people may be at risk of excessive bleeding, and other genetic tests that determine how people metabolize the drug Coumadin (warfarin) which is used to prevent blood clots, determine how the drug is administered to different individuals, and in what dosage.

 

www.fda.gov/NewsEvents/Newsroom/PressAnnouncement/2007/ucm108967.htm

 

Eventually gene sequencing will spread throughout the population. A study is underway at Inova Health Systems of 500 families whose newborns’ medical history includes a preterm whole genome sequencing to identify molecular markers and genetic differences. The goal of the study is to learn more about disease prevention and detection as the newborns mature.

 

http://www.inova.org/clinical-education-and-research/research/inova-transitional-medicine-institute

 

While this is a tiny segment of the newborn population, there will be a time (perhaps in 25 years, or less) when all babies will have their genome sequenced and the results preserved as part of their digital health record. This genetic information will become a standard element of a person’s medical history, and will follow that individual through life. It will determine many aspects of the individual’s medical treatment.

 

There are many hurdles and challenges before whole genome sequencing will become ubiquitous. There are issues of bringing down the cost of whole genome sequencing so that it is affordable and perhaps even covered by medical insurance. There is a greater challenge of how to deal with the massive amounts of data that result from whole genome sequencing including who will pay for the analysis of the data, how will the data be stored and regulated and how privacy of health information will be attained.

 

Personalized medicine forces all of us to be more participatory in our health care because decisions about whether or not to opt for genome sequencing is one that we have to make for ourselves. We are also forced to make life altering decisions, based on the data, regarding:

 

• Whether we are going to address a potential disease that may be in our genetic markers, in advance of the onset of the disease.
• How the genetic information we receive might influence our decision to have children.
• How to protect our children regarding what is revealed in their genetic history.

 

Personalized medicine is a revolutionary trend that deserves the attention of every individual who is engaged and educated about health care because the benefits are huge and the responsibilities, both on the part of the individual and society, to use this information for positive medical advancement and better personal outcomes is daunting.

 

Understanding Consumer Directed Health Plans

Knowledge is the most important thing in most circumstances, but when choosing a health plan that will protect you and your family you need to know everything there is to know about your costs vs your payments. Consumer-Directed or Consumer-Driven Health Plans that include health savings accounts, (HSA) flexible spending accounts (FSA) and health reimbursement accounts (HRAs) could save you money and help you plan wisely for unexpected health expenses. 

Health savings accounts are like personal savings accounts, but the money in an HSA can only be used for health care expenses. Both employees and employers can contribute to an HSA up to an annual amount limit, set by a statutory cap: @$3,000 for a single individual and @5,000 for a family. (www.wikipedia.org/wiki/Health_Savings_Accounts/limits#contributors).

Employee contributions to an HSA are made on a pre-income tax basis and some employers arrange for contributions through payroll deduction. However, individuals own and control the money in an HSA. Once deposited, this money cannot be accessed by your employer or your insurer. The money is not taxed, and you can invest it in stocks, bonds and mutual funds. . Further, you don’t have to spend the money put into the account by year end or otherwise lose whatever is left. Money can be rolled over from year to year which enables you to accumulate tax free dollars that can be withdrawn at age 65.

 To be eligible to open an HSA,  you must have a special type of health insurance called a high-deductible plan.  High-deductible plans act like a safety net if you need extensive medical care. Like any health care option, HSA’s have advantages and disadvantages. When considering an HAS, you must review your anticipated health care expenses, your financial situation and how much control you want over your health care spending. If you're generally healthy and want to save for future health care expenses, an HSA may be an attractive choice. However, if you anticipate needing expensive medical care in the next year and would find it hard to meet a high deductible, an HSA might not be your best option.

The Flexible spending account is another tax-advantaged financial account and allows you to set aside a portion of your earnings to pay for qualified expenses, most commonly for medical expense but often for dependent care as well. Money is deducted from your paycheck into an FSA and is not subject to payroll tax, resulting in a substantial payroll tax savings. FSAs are commonly offered with more traditional health plans and do not require you to enroll in a high deductible plan. Most people who have an FSA use it to pay for medical expenses not paid for by insurance, usually deductibles, copayments, and coinsurance. Prior to January 1, 2011, over-the-counter (OTC) items such as bandages, rubbing alcohol, first aid kits, and other medical expenses not distinguished as a drug or medicine were reimbursable under health care FSA plans. The Patient Protection and Affordable Care Act changed the rules, allowing reimbursement for these items only when purchased with a doctor's prescription. FSAs can also be established to pay for care for dependents who live with you and need care while you are at work. This includes child care, for children under the age of 13, or for children of any age who are physically or mentally incapable of self-care, as well as adult day care for elderly dependents. The dependent care FSA is federally capped at $5,000 per year, per household. The minimum annual amount you can elect is $250 per account. One significant disadvantage to using an FSA, unlike the HSA, is that funds not used by the end of the plan year cannot be rolled into the next year.

Health Reimbursement Accounts are medical care reimbursement plans established by employers and used by employees to pay for health care. Employers typically commit to a specific amount of money to be available in an HRA for an individual to pay premiums and other medical expenses. Unspent funds in an HRA are usually carried over to the next year; however, employees do not take their HRA balance with them if they leave the job. HRAs are initiated by the employer and serviced by a third-party administrator or plan service provider. The employer may provide in the HRA plan document that a credit balance in an employee's HRA account can be rolled over from year to year like a savings account. This is an individual employer decision.

The money set aside in health savings accounts, flexible savings accounts and health reimbursements accounts provide a cushion and a comfort against unexpected health care expenses and are worth investigating. Choosing the right iteration is an individual decision based on projecting your health needs for the coming year. It is important that you arm yourself with as much information as possible to make the best choices. 

Choosing Health Care Coverage: Issues and Options

As the year concludes, many of us are tasked with electing our healthcare plan for next year. External factors, not in our control, influence what our healthcare costs are going to be. The overall economic slowdown and rising federal deficit, has placed great strain on the systems that have traditionally financed health care, including private employer-sponsored health insurance coverage and public insurance programs such as Medicare and Medicaid. Since 1999, family premiums for employer-sponsored health coverage have increased by 131%, while real wages are growing at a much slower pace or have even stagnated in many industries.  

This is my year to switch from the healthcare plan provided by my husband’s law firm to Medicare Part B and a Medigap program.  I am making the change because I will save several thousand dollars, now that I have reached the magic age where I qualify for this coverage. Trying to figure out how to get the best health care benefits from what is available, and understand the rules and regulations presented in the Medicare Subscriber Handbook, Medicare and You, 2012 or on the website www.medicare.gov is akin to wading through Chaucer in old English. 

So I asked my friends and colleagues which plan they were using and why.  I talked with my healthcare providers to find out if there were Medigap plans that they would not accept, to determine which plans were going to allow me to keep the same physicians and hospital that I have been using for years. I spoke with several health plans and did an extensive comparison of their benefits and payment process. I read articles on the web and looked at plan ratings.  Armed with all that information, I made a choice that I am comfortable with.   

You also need to research your options if you are to get the best plan for you and your family. Among the questions that you need to ask when choosing your health plan are the following:

• Does the plan provide the specific benefits and services tailored to your needs? Are those services available quickly and efficiently?
• How much is the monthly premium and what does that total for a year?
•  What does the policy cover for specific health events?  Does it include prescription drugs, out of hospital care, rehabilitation or home care? Does it include lab fees and emergency room visits? Do you have the option to see a specialist and what are the out of pocket costs?
• Are there limits on the number of days insurance will pay for hospital or rehab services?
• Are there some medical conditions that are not covered by the plan?
• Are there waiting periods involved with coverage?
• What is the deductible?  Can you lower the monthly premiums by raising the deductible?
• Is there a maximum that you must pay out of pocket per year?
• Is there a lifetime maximum cap that the insurance will pay?
• Can you go to the physicians and hospitals best situated for you?  How easy is it to see a specialist?
• How is the plan ranked against its competitors and by its subscribers?
• Do members get the therapy treatments they need?
• Does the plan provide preventive/wellness services?
• Is the plan accredited? The National Committee for Quality Assurance (NCQA, www.ncqa.org) evaluates and rates plans on several quality measures as does the Joint Commission on Accreditation of Healthcare Organizations (JCAHO www.jcaho.org).  A visit to the websites of either of these organizations can give you rating information at no charge.

 Additionally, you need to make sure that the policy protects you from excessive medical costs that you might face, particularly if you have ongoing medical issues. Read the fine print to make sure there are no contingencies regarding what is covered and what is not.  Understand, as an outpatient and inpatient, the benefits and co-payments you are required to make, and whether or not there is an annual deductible before the policy will start to pay. Know exactly what may be excluded from your coverage (certain diseases, therapies, procedures) and understand the added benefits such as membership in a health club or an allowance towards a weight loss program.

(These points and questions and more are discussed in my book: e-Patients Live Longer, The Complete Guide to Managing Health Care Using Technology.)

Health care is no longer a given where you sign on the bottom line and are insured for another year.  It is a major item in your annual budget, and when those forms come across your desk, take the time to do the research, ask the right questions and read the fine print for a better, more economical and healthier New Year.

Is That CT Scan Really Necessary? Benefits vs Risks

Can you imagine a 100 year old woman experiencing her first mammogram? Or a healthy 80-year-old man who was left incontinent and impotent by radiation treatments for prostate cancer, a disease that typically grows so slowly that many men die with, but not of it. Every year, like clockwork, there are thousands of women in their eighties, who still get their annual mammogram and undergo screening colonoscopies at three- or five-year intervals whether or not they have had cancerous polyps that would warrant such frequent testing.  Every year there are thousands of men in their eighties who faithfully get regular PSA tests to check for prostate cancer and routine cholesterol screenings, which can lead to the prescription of statin drugs that require regular blood tests to check liver function.  (Typically, cholesterol plaque takes years to accumulate, and statins confer only a modest benefit in the elderly.)

The New England Journal of Medicine reported in March, 2010, that too many angiograms were administered to patients who do not really need them. Angiograms which are invasive imaging tests for heart disease carry a slight risk for stroke or heart attack during the procedure. (www.kaiserhealthnews.org/daily

The Journal   also reported in an article in September, 2010, Lessons from the Mammography Wars, © 2010 Massachusetts Medical Society, that there is a disagreement among physicians regarding the age at which to begin, and end as well as how often administer mammograms.  It had been assumed that for all women over the age of 40, breast cancer screening with mammography should be a once a year routine. The discussion continues to this day.. www.nejm.org/lessonsfromthemammographywars.)

One has to wonder about these routine screenings for cancer and other ailments for people in their 70s, 80s and 90s, even at 100!. Many medical experts say there is little evidence of benefit, and considerable risk, from common tests for colon, breast and prostate cancer, because these tests often trigger a cascade of expensive, anxiety-producing diagnostic procedures and invasive treatments leaving patients worse off.

What is the cause of perpetual over-testing that has little benefit to the health of patients and increases the cost of healthcare by an order of magnitude for all of us? Are these tests ordered by doctors who are trying to be cautious and avoid malpractice lawsuits? Or are they demanded by patients who are becoming more educated about what is available, and fueled by an attitude among US patients that,if a screening is available, it should be done whether or not it is needed?  A 2010 study in the Journal of the American Medical Association of more than 87,000 Medicare patients found that a "sizeable proportion" with advanced cancers continued to be screened for other malignancies. We have to ask whether this is good medical practice.

The New York Times reported in June 2011, that long after research indicated that CT Scans can expose people to dangerous radiation levels if done too frequently, Medicare was making payment for scores of elderly patients in hospitals throughout the country who were given two scans in succession on the same day – one using contrast to check blood flow and one that did not. This practice has been stopped, but many forms of over testing still occur every day. www.nytimes.com/health/guides/test/abdominal-ctscan/overview.html

.Why do doctors continue to screen elderly, ill patients?  What can patients do about it?
he Foundation for Informed Medical Decision Making offers some guidelines for e-patients who want to control their own destiny, avoid unnecessary, often painful tests, and be mindful of the cost of their care as follows:

1.  For all tests, ask two questions. What is this test for? And, what do you expect to find?

2.    For tests the doctor runs in the office (blood work, EKGs, MRIs), ask the questions above, and then ask what that test will answer that another test, already ordered, may not. Or, ask if there is a less expensive test, available that will supply enough information but not more than is needed.
3.    For all tests, ask when the results will be available, and ask that copies of tthe test results and records be supplied to you directly as well as to your doctor.
4.    Finally, ask the doctor about scheduling a time, whether by phone, email, an e-visit or in person, to discuss test results and treatment options before you agree to further tests and procedures.
Only you can assure that for every test or procedure you undergo, the benefit outweighs the risk.