By Ruth Lubic. The release this week of Amnesty International’s new report, Deadly Delivery: The Maternal Health Care Crisis in the USA,  highlights the poor outcomes of African American women in particular. 

When I set up The Developing Families Center in Washington DC’s Ward 5, it was with the goal of addressing this very issue, particularly from the point of view of infant mortality.

At a rate of 12.22 per thousand live births, the District has the highest infant mortality of any of the states, with only Mississippi, at 10.74 also experiencing a double digit rate.

Probably the thousands of nurses who have been following this case were encouraged to read the press report of its outcome:

“Texas jury finds nurse not guilty for reporting a physician for unsafe practices.

It took the jury less than an hour on February 11, 2010, to return a not guilty verdict for the nurse, Anne Mitchell, of felony charges of “misuse of official information,” for reporting a physician to the Texas Medical Board for what she believed was unsafe patient care.

Since news of the criminal indictment – and Mitchell’s being fired from her job – first spread through the nursing community, nurses across the country have followed developments. Labeling the criminal indictments “outrageous,” an outpouring of support – and financial contributions to the Texas Nurses Association Legal Defense Fund – has continued.

According to a New York Times article on February 9, the prosecutors claimed that Mitchell intended to damage the physician’s reputation when she reported him to the Texas Medical Board, which licenses and disciplines doctors. Mitchell explained that she felt an obligation to protect patients from what she saw as a pattern of improper prescribing and surgical procedures – including a failed skin graft that was performed in the emergency room, without surgical privileges.

Conflicts of interest seemed to be part of this case with allegations that this case was, in part, a result of the local sheriff being good friends with, and a former patient of the physician, and bending the rules to protect his reputation.

A number of nurses who had previous worked at the same Winkle County Rural Health Clinic testified in court that they left the clinic because of their concern about the care provided by the same physician that had never been addressed. The case is no less perplexing as to why Mitchell was even indicted – all witnesses (even the state’s) have agreed nurses have a duty to report unsafe care.

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Healthcare (insurance) reform has passed in the Senate and final negotiations are happening before it moves on to the President’s desk for signature. While the legislation is not perfect – in fact some would say far from perfect – it is a piece of legislation that is very much in keeping with our American philosophy, our constant pursuit of progress and change.

As the late Senator Kennedy’s career on Capitol Hill demonstrated, change is usually incremental, usually negotiated and usually compromised. But at the end of the day, change usually amounts to progress.

I see tremendous progress, too, as I look back on a decade’s worth of work to promote access to affordable quality health care using nurse practitioners in the role as primary care providers, thereby alleviating the burden on a strained primary care system.

We’ve come a long way regionally and nationally. The fact that we as a country are always striving to improve our path is what most invigorates me as a relatively new American. Our pursuit of progress is never ending, but it is what sets us apart from most countries in the world. We know our work is never done. As we enter a new year and decade, we always should remember that what makes us different from most people and countries in the world is that we have the freedom to purse progress and make change.

This health insurance reform bill is not the end all or be all, but it will help make affordable health insurance available to more than 30 million Americans who have been without it. Furthermore, the legislation contains many provisions for others who fall through the cracks and will need additional care and support.

That’s progress for individuals, families and America, as Walt Disney would have said. And not until you take a ride on the Magic Kingdom’s The Wheel of Progress will you truly appreciate how important it can be to take even a small step in the right direction.

Happy New Year! And a toast to a New Decade and our new Pursuits of Progress for individuals, families, and our country.

The following post by Dr. Agnes Binagwaho, Permanent Secretary of the Ministry of Health of Rwanda, is part of Disruptive Women’s “The Value of Health: Creating Economic Security in the Developing World” series.

Dr. Binagwaho is a pediatrician specializing in emergency pediatrics, neonatology, and the treatment of HIV/AIDS in children and adults. She has served 4 years as Chair of the Rwandan Steering Committee for the United States President’s Emergency Plan for AIDS Relief (PEPFAR), and was responsible for the management of the World Bank MAP Project in Rwanda, while also serving on the country’s High Commission on Aid Policy.

Unfortunately, in the majority of the developing world, mental health is not an issue that is given adequate attention. However, if we take the definition of WHO, mental health plays as important part in overall health as the physical aspects do. To improve mental health, governments have to create a well-trained and well-equipped workforce to care for mental health and ensure that the funding and human and physical infrastructures are available. This will help to increase access to mental health care, but should be completed by making drugs available, like psychotropic drugs. Many of these medications are not so expensive and can be part of public essential drugs available at public health facilities. It is a matter of paying attention to the problem.

Also, the general population should be educated via mass media campaigns so that they will have less fear and a better understanding of mental health diseases and those who suffer from them, causing mental health patients to suffer from less isolation, stigma and discrimination. This can be done by partnering the government with civil society organizations to improve the public education on this issue through TV, radio, speeches, billboards and community events.

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“What appears to be non-compliance from a medical perspective may actually be a form of asserting control over one’s own behavior.”

I’ve always liked this characterization of patient adherence from Peter Conrad, The Meaning of Medication: Another Look at Compliance. It takes into account the fact that we’re dealing with people. What many times seems irrational to us as healthcare professionals, has most times been rationalized by the people for whom we provide care.

Human behavior is complex. Behaviorists describe human development as a 4-part process: physical (how we grow or age), cognitive (how we think), emotional (how we feel) and social (how we are valued). In listening to (researching) tens of thousands of patients – across therapeutic categories – over the last two decades, I’ve found that the following hold true:

How Patients Think: Most people know only the most superficial facts about their health. However, when presented with unexpected, personally relevant information many are motivated to act (e.g. adhere). Women were motivated to do annual mammograms when they were told how much “finding a lump the size of various millimeter-size pearls” equated to surviving breast cancer.

This is not to say that we all need a Ph.D. in what ails us. Judith Hibbard’s work at the University of Oregon suggests that “controlling costs and achieving health care quality improvements require the participation of activated and informed consumers and patients”. Her model focuses on patients acquiring knowledge, confidence and skills to act.

How Patients Feel: Fear operates to produce adherence in one patient and rapid non-persistence in another. Trust, on the other hand – in the healthcare system, our personal healthcare providers, and health products and services – resonates across audiences.

Most of us don’t see or directly interact with many of the stakeholders involved in our heathcare (e.g. our governments, managed care organizations, pharmaceutical companies). Instead, we see or talk to our personal physicians, pharmacists, and health agents who provide service. Trust in daily, health interactions is key to patient adherence to a recommended plan of action.

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As I mentioned in my post last week, Disruptive Women in Health Care is tackling the issue of drug adherence, often referred to as America’s other drug problem.  From a health policy standpoint, the issues cross financial, clinical, behavioral, and cultural boundaries.

Over the next two weeks, Disruptive Women and guest bloggers, all experts in their respective field–each representing a different perspective — patient, physician, nurse, pharmacist, researcher, behaviorist, policy analyst, distributor, to name a few–will share their analyses, opinions, and solutions.

At the completion of this series, we will compile an e-book as we did when we tackled the issue of Comparative Effectiveness Research.

THE SCOPE OF THE PROBLEM

A new report, Thinking Outside the Pillbox: A System-wide Approach to Improving Patient Medication Adherence for Chronic Disease, issued by the New England Healthcare Institute (NEHI) found that patients who do not take their medications as prescribed pay a price in poorer health, more frequent hospitalizations and a higher risk of death.

Collectively, noncompliant patients incur up to $290 billion annually in increased medical costs–that’s $290 billion in avoidable medical spending every year, according to the NEHI report.

This is not a new problem, nor is it unique to the US.  In 2003, the World Health Organization (WHO) issued a landmark report entitled Adherence to Long-Term Therapies in which it noted:

Adherence to therapies is a primary determinant of treatment success. Poor adherence attenuates optimum clinical benefits and therefore reduces the overall effectiveness of health systems.

“Medicines will not work if you do not take them.”  Medicines will not be effective if patients do not follow prescribed treatment, yet in developed countries only 50% of patients who suffer from chronic diseases adhere to treatment recommendations. In developing countries, when taken together with poor access to health care, lack of appropriate diagnosis and limited access to medicines, poor adherence is threatening to render futile any effort to tackle chronic conditions, such as diabetes, depression and HIV/AIDS.
This report is based on an exhaustive review of the published literature on the definitions, measurements, epidemiology, economics and interventions applied to nine chronic conditions and their risk factors. These are asthma, cancer (palliative care), depression, diabetes, epilepsy, HIV/AIDS, hypertension, tobacco smoking and tuberculosis.

In the intervening years since the WHO issued its report, adherence has become more problematic.  Numerous reports highlight the ongoing challenges, which are especially critical in the mental health arena.

A study in the American Journal of Psychiatry found that close to 60% of schizophrenics who were prescribed anti-psychotic drugs did not take the medication as prescribed by their physicians.  “We looked at adherence to anti-psychotic medication because they form the backbone of treatment for schizophrenics,” said Dr. Dilip Jesete, co-author of the study.  “These medications are good, but only work when taken properly.”

The study found that psychiatric hospitalizations were higher for people who did not take their medication as prescribed.

When schizophrenics, a disease which affects over 2 million Americans, do not take their medication, they are at risk for dying by suicide.  Four out of ten people who suffer from schizophrenia attempt suicide and one in ten die by suicide.

SOLUTIONS

Despite the complexity of adherence related challenges, a number of promising solutions, innovative responses and well-researched efforts are underway.  Many of these will be described in greater detail in our Drug Adherence series.

Some of these include:

• Text message alerts to remind patients
• Greater use of health care teams
• Integration of health information technology
• Creation of online and offline medication management systems, reminders
• Health e-games
• Insurance reforms
• Public awareness campaigns
• Patient education
• Mobile phone applications
• Research in gender-based barriers

We look forward to your comments and input as we shed light on this critical policy issue.

It has been estimated that 3 out of 4 people report that they do not take their medications as directed, resulting in hundreds of billions of dollars annually in related medical costs and an enormous number of hospital admissions and readmissions.

The reasons for this are complex and varied.  This is a particularly vexing challenge for young, chronically ill patients, for people with mental health diagnoses and for the elderly who may suffer from memory impairment.  Anyone on a complicated drug regimen knows how committed one must be to remain adherent.

For some, cost is an issue while for others side effects can be unpleasant, travelling can compromise the best of intentions as can the need for refrigeration when none is available.  Some patients must take some drugs on an empty stomach and others on a full stomach.  Some patients are simply not ready to accept they have a serious, or lifelong illness. It is complicated.

Because the implications, both clinical as well as financial, are significant, we have invited a number of our Disruptive Women bloggers, as well as some other experts in the field, to join us in a series of policy posts on this critically important issue.

Beginning next week, on October 19th, we will launch our Drug Adherence series which will analyze this challenge from a number of perspectives:  patients, providers, researchers.  In addition, we will also offer innovative solutions.

At the completion of this series, we will compile all the posts into an e-book, just as we did when we tackled the issue of Comparative Effectiveness Research and created our Comparative Effectiveness Research e-book.

If  you or someone you help care for has experiences you would like to share, or you have research, solutions and other thoughts on this topic, I hope you will share them with us.

Ever wonder why your physician only spends 5-10 rushed minutes with you during your office visit? You may think it’s because there are simply too many patients vying for her time, but that’s not the real reason. The root cause is that health insurance companies are stealing time from your visit by requiring excessive documentation from your doctor. She can’t give you the time you need, because doing so would put her out of business.

In a special report on the administrative burden of healthcare, MedPage Today revealed that PCPs spend about one third of their income on documentation required by health insurers. Because they run a business with thin margins, they must increase the volume of patients they treat in order to cover the salaries of the staff required to manage this “paper weight.”

About 49% of all physicians have said that they are considering retiring or quitting medicine in the next two years (the rate is lower for specialists), largely because of increasing documentation requirements and decreasing reimbursement.

Primary care is hardest hit by costs of coding and billing requirements, since they charge relatively little for their individual services. Imagine the difference in complexity between freezing a wart versus removing an appendix. Yet the number of people required to document, code, and process the paperwork for those two procedures are similar. The reimbursement, however, can differ by thousands of dollars.

The average PCP requires 4.5 staff to manage the administrative challenges associated with practicing medicine. If you consider that the average annual income for a PCP is $149,200, then it’s easy to see why a PCP’s income barely covers staff salaries, let alone the overhead associated with office space, supplies, and computer technology.

How can family physicians survive in this hostile reimbursement environment? There are really only two choices: to work in large group practices or to cease accepting insurance. (Of course, I’m leaving out the third option: to choose a different career).

I have decided to join an insurance-free practice. Now, before you assume that this means “concierge medicine” with exorbitant membership fees – let me tell you that it’s not what you think. DocTalker Family Medicine simply charges an hourly rate for my time – and I do whatever is appropriate for the patient, whether it’s a house call, an office visit, an email, or a phone call. There is no membership fee, people can pay with their credit card, cash, check or PayPal, and once we’ve met in-person and a full history and physical is performed, much of their care can be accomplished remotely.

So what does that cost? The average patient in our practice spends $25/month on their primary care needs. Isn’t that amazing? We can charge reasonable rates because we’ve reduced office staff from 4.5 to 0.5 people/provider and we pass on the savings to patients. We answer our own phones, we see almost all patients within 24 hours, and we’re available 24/7 by phone and email. And you know what? We’re happy to do it because we find meaning in every interaction. We aren’t being crushed by a paper weight.

As healthcare reform moves forward, and new ways are sought to wring money out of a crazy and convoluted system, it might just make sense for some of us to opt out and get back to basics: a doctor or nurse available 24/7 for your primary care needs at a price you can afford. No red tape, no unnecessary office visits, no insurance company hassles.

Anderson Cooper sent a reporter to our practice to see for herself what hassle-free medicine actually looks like. I hope you enjoy the segment… and if you’re in the DC or Virginia area, please check us out for yourself!

This post was originally published at Better Health.

Big news: The FDA is holding a public hearing to discuss online promotion of FDA-regulated medical products – including prescription drugs, prescription biologics, and medical devices. The hearing will be November 12 and 13, 2009 in Washington, DC (registration closes October 9 – see also registration instructions from Eye on FDA), but public comments can be submitted in writing or electronically now through February 28, 2010. View the docket details and full Federal Register notice.

A common reaction around the Web has been “Finally!” – with remarks like “This is NOT a Hoax!” and “Just in time for Web 3.0,” the FDA has set a date to start figuring out “how to deal with Web 2.0.” (NPR Health Blog).

But after the initial shock and sarcasm subsides, the potential significance of the FDA’s (albeit long overdue) move forward this week starts to sink in – this could result in the most significant set of regulations since the FDA’s guidelines for broadcast direct-to-consumer (DTC) advertising in the late 1990s. We’re talking industry-changing stuff here – or rather, industries-changing, because you can be sure that pharmaceutical companies, physicians, consumers, Internet and social media companies, the advertising and public relations industries, and everyone whose revenue includes online advertising are all major stakeholders in this public policy debate.

So what has the FDA highlighted as the key elements for discussion of this issue? (List below drawn from the 9/21/2009 FR notice)

1. For what online communications are manufacturers, packers, or distributors accountable?
   • (paraphrased) What communications and discussions should be considered “by, or on behalf of” versus independent of influence from these companies – and when and how should companies “disclose their involvementor influence,” particularly “on third-party sites”? Should different types of online media platforms and different intended audiences of these platforms be considered differently when addressing these questions – if so, how?
2. How can manufacturers, packers, or distributors fulfill regulatory requirements… in their Internet and social media promotion, particularly when using tools that are associated with space limitations and tools that allow for real-time communications (e.g., microblogs, mobile technology)?
   • (paraphrased) How should product information be presented on these platforms so that users have appropriate access to both risks and benefits?
3. What parameters should apply to the posting of corrective information on Web sites controlled by third parties?
4. When is the use of links appropriate?
   • (paraphrased) Should there be rules about the use of “links to and from Web sites,” including links to or from unbranded websites to or from clearly branded company websites? And what research and data exists about the click-rates in different contexts of users seeking information about medical products?
5. Questions specific to Internet adverse event reporting
   • (paraphrased) How are companies that are obliged to report adverse effects of products using online media tools, if at all, to monitor information about adverse effects of their products? Should these companies be obliged to monitor and/or report information from online communications concerning adverse effects of their products?

We – and the FDA – want to know what you think. What are your gut reactions to all of this – do you find anything particularly worrying, are there any potential outcomes you’re especially hoping for?

If you submit any comments to the FDA – and we hope you will – come by and tell us about it in our comment section here (and we promise to do the same). More information about the public hearing and submitting comments is available here.

Several months ago I was attending a funeral.  After being introduced to a relative’s relative, my family member asked me if I knew what had happened to Mr. Smith, pointing to the elderly man walking with a cane.  It was a miracle my family member said.  A miracle I wondered, looking skeptically at him.  Yes, Mr. Smith was having a CAT scan and the results showed that he had pancreatic cancer.  A miracle I asked, why so.   As it turned out the patient, who in his early 80’s went to his doctor complaining of not feeling well.  Abdominal pain. Distention.  General malaise and discomfort.  One thing led to another and CAT scans were ordered.   And as the family story goes, “by mistake” a CAT scan of his pancreas was performed.    And as I understand the story, the tumor was removed.  No metastasis was found.  The gentleman was advised to be sure to come in for his scheduled checkups and to tell his doctor about any subsequent health problems, and to be prepared for follow-up tests.   He was told that some tests will be repeated in order to see how well the treatment is working.  The recent death of actor Patrick Swayze reminds us that pancreatic cancer is so difficult to detect and diagnose early. There aren’t any noticeable signs or symptoms in the early stages of pancreatic cancer.  The signs of pancreatic cancer, are often like the signs of many other illnesses.[1]   Hmmm, I agreed, a miracle by accident.

We won’t ever be sure what could have been if we had paid more attention to the signs and symptoms. Mom had died in October 2006. Dad had visited her in the hospital and the rehab center and the nursing home for seven months, every day, day after day after day. They had been together for 50+ years. And he had been sure to tell the story of their meeting and their marriage and their lives together to anyone……. well actually to everyone that he met. After mom passed, he slowly managed to go on with his life without her. It was not easy. He had to learn how to use the microwave, how to make coffee, and how to cook. He mastered the art of grocery shopping and doing his own laundry. One day at a time we encouraged him. Slowly he managed to pick up the pieces and take care of himself. Or so we thought. Sure he often spoke of missing her. And he mentioned having trouble sleeping and not really feeling like eating. He told us that he often would get up in the middle of the night and then take naps during the day. He mentioned being invited to join friends for lunch or dinner but not feeling well enough to do so. He seemed more and more tired and uninterested in life. Dad we asked, did you go for a walk today? No, no, no he said, it’s too hot. Dad we said, perhaps you should see the doctor. No, no, no, I have an appointment next month. Dad we said, perhaps you could talk to the Rabbi. No, no, no, I don’t want to bother him. Dad, we said, your friends want to see you. No, no, no I am not good company. Dad, we said, please come visit ….. the grandkids want to see you. No, no, no…it’s just not that easy to travel at my age, he would say. Dad we said, why don’t we all take a vacation together? No, no, no he said, it’s just not easy to get around. Dad we said, why don’t you see a counselor or join a grievance support group? No, no, no, he said, I am just not ready. Dad, we agreed is really, really depressed about mom’s passing… his grief seems insurmountable. He’s really having a hard time being by himself. But even so maybe we should call his doctor…maybe it’s more than depression or grief. It looks like he’s losing weight and he’s always tired and seems to be sleeping more and more. The pain of his loss never seemed to subside. His grief seemed to appear mostly in physical ways: restlessness, exhaustion, sleeping problems, appetite changes, body aches, stiffness of joints, weight loss, and increased fatigue. But two years later he was still suffering much as he had back in 2006. Maybe it was time for us to insist that we go with him to his doctors.

Hmmm said the doctor…..weight loss, tiredness, loss of appetite, decreased energy, and depression. Let’s run some tests. Hmmm said the doctor lets get a scan. Hmmmm said the doctor I think we need an MRI. Hmmm said the doctor, I want to get a liver biopsy. Hmmm, said the doctor I am sorry but its pancreatic cancer and its spread to the liver and given your dad’s age and condition, I don’t think there is much we can do. Dad died in November 2008, two months after his diagnosis.

As the nation focuses on how to cut the cost of so-called health care reform, maybe it’s time to pay attention to demonstrated methods for improving care while reducing costs that are not yet supported by Medicare and other payers. We cannot afford the system we have and changing it should be on the top of the agenda for anyone who wants to extend coverage of health care to all and improve health outcomes.

For example, many readers of this blog will have had the experience of being a patient or family caregiver for someone who is older and has multiple chronic health problems that periodic become acute and require hospitalization. Once discharged from the hospital, the patient and caregiver often feel at a loss for how to manage some of the problems that can arise even within hours of discharge. A study published in the New England Journal of Medicine in April of this year reported that one in five Medicare patients who are discharged from a hospital will be readmitted within 30 days. That number keeps increasing with time, so that by the end of one year, about half of these patients will have been readmitted. This is costing the nation an estimated $17 billion.

Mary Naylor is a nurse researcher at the University of Pennsylvania who has spent more than 20 years developing and studying what she calls a Transitional Care Model (PDF). Under this model of care, an advanced practice registered nurse (APRN) goes into the hospital when high risk (for readmission) patients are admitted. The APRN assesses the patient and family caregiver, clarifies the plan of care and coordinates the input of sometimes multiple health care providers, prepares the patient and family caregiver for discharge, then makes a home visit within the first 24 hours after discharge and continues to work with the patient and family caregiver for up to 90 days post-discharge. Naylor says this is more than “care coordination.” She sees it as an opportunity to help patients and families rethink how they approach and manage their care. The APRN will even go with the patient and family caregiver on a follow up visit to the physician’s office to model how to make the best use of this time.

Naylor isn’t the only one doing this work. Eric Coleman of the University of Colorado at Denver Medical Center and Chad Boult of the John Hopkins University Health Institute have developed variations on the Naylor model. All show that hospital readmission rates decrease, money is saved and health outcomes improve in some way.

Now AARP has worked with Congress to develop a Medicare Transitional Care Act (H.R. 2773/S. 1295) that has been introduced into both houses of Congress. The Act calls for Medicare to pay for a transitional care benefit, first for high-risk patients and then, if the outcomes of this first phase are satisfactory, for low- and moderate-risk patients. It’s long overdue. I now believe it to be unethical for hospitals to discharge patients knowing that they don’t have the knowledge and resources to help them through this difficult transition to home. To read about the details of the bill, go to http://www.govtrack.us/congress/billtext.xpd?bill=s111-1295. The bill needs advocates who will urge Senators and Representatives to sign on as co-sponsors or, at the very least, support this important legislation.

EAST COAST.  In and around the DC Beltway, there is a tremendous amount of excitement when it comes to Health Information Technology (HIT).  Lots of mainstream IT vendors, trade associations and HIT gurus are licking their chops.  Policy wonks, legislative aides and administration appointees have been diligently debating the thorny issues of the day: privacy, security, standards, and meaningful use.

WEST COAST.  In and around Silicon Valley, there is a tremendous amount of excitement when it comes to Health Information Technology (HIT). Lots of software engineers, health 2.o entrepreneurs, and venture capitalists are licking their chops.  IT experts,  computer intelligensia, and bleeding edge developers have been diligently innovating the thorny issues of the day: privacy, security, standards, and meaningful use.

East meets West.

Policymakers and legislators are talking about the promise of increased efficiencies and cost savings. And meaningful use.  HIT innovators are talking about the right to personal health data and personal health records.  And meaningful use.

Lots of people are talking about meaningful use.  Here’s what the Department of Health and Human Services’ Office of the National Coordinator’s website has to say about it:

The American Recovery and Reinvestment Act authorizes the Centers for Medicare & Medicaid Services (CMS) to provide a reimbursement incentive for physician and hospital providers who are successful in becoming “meaningful users” of an electronic health record (EHR).  These incentive payments begin in 2011 and gradually phase down. Starting in 2015, providers are expected to have adopted and be actively utilizing an EHR in compliance with the “meaningful use” definition or they will be subject to financial penalties under Medicare.

The focus on meaningful use is a recognition that better health care does not come solely from the adoption of technology itself, but through the exchange and use of health information to best inform clinical decisions at the point of care.

Informed clinical decision making must include the patient.

But who’s talking about meaningful use for today’s patients, the future HIT generation?

What we have here is a teachable moment:  If we are really serious about meaningful use, it must be meaningful for the patient.  Not just for health providers.

• How do we make sure the public (patient and caregivers) are well informed?
• What, if any, consumer protections may be necessary (ie, a misdiagnosis is inadvertently entered in an electronic health record–who, how does that correction get made–everywhere in cyberspace?)
• How do we insure that all people–the disabled, those who don’t speak English–will be able to meaningfully use HIT?

My suggestion:  As we make the transition from paper to electronic records let’s have the National Coordinator, working with patient, consumer, and provider groups develop a HIT LIST–a plain English (with translations as needed) document explaining what electronic records are, why they are meaningful/useful to patients, along with a consumer check list of questions patients should ask. If I were putting this together, I would also include where to go for help (both online and offline).

Ideally, patients need to receive this HIT LIST before they are sick.

Should managed care sue patients?

We arrive at the dawn of yet-another health reform effort with laws and regulations already in place to protect patients. These arose in past decades when the healer-patient relationship was eroding, presumably at the hands of uncaring clinicians and for-profit medical enterprises.   

The list of those rights was extensive and today’s debates are adding to the mix – guaranteed coverage despite pre-existing conditions comes to mind. The discussion of patient rights has always been politically attractive and I won’t denigrate any one of them. I’m not just writing from a policy perspective, but a personal one as well. I’m a patient, too.

The discussions of patients’ rights, however, has neglected the flip side of rights—responsibilities on the part of patients, and the support that we all need from our communities to be healthy people. Today’s healers are beset with immense responsibilities, yet with few reciprocal rights of their own in their relationships with patients or communities.

As patients, communities and a nation, we all too frequently fail to follow medical advice or practice healthy behaviors, and yet expect that helath care will ‘make it right’ when we become ill or incapacitated.  We smoke, abuse alcohol and drugs, carry guns, drive fast, forget seatbelts, neglect immunizations, shun prenatal care and spread sexually transmitted diseases. We ignore social problems until they create health care consequences—low birth-weight babies, elderly who lack social acceptability, and teens suffering gun-shot wounds. When these risky behaviors result in chronic or high-cost illnesses and disabilities, health-care providers are expected to assure that we get the care we need, insulating us from the cost of our choices by providing whatever we need within a fixed budget. The time has come to broaden all of our health policy and political discussions to encompass the realities that, with rights come responsibilities.

So some questions:

• If managed care has a responsibility to meet all the patients’ needs, do patients have the responsibility to practice healthy lifestyles?
• If patients have the right to sue health-care providers for the failures to meet the patient’s expectations, do health-care providers have a similar right—to sue patients for the costs incurred from their failures to follow medical advice?
• At what point do patients who have rights also become citizens who have responsibilities, particularly as we all—collectively—pay for each other’s health care?
• If the community has a right to call on health-care providers to keep us all productively at work and at school, do communities have a responsibility to do their share as well?
• As the population ages and more health-care costs are attributable to lifestyle, can we afford not to hold patients and communities more responsible for their own health-damaging, cost-increasing behaviors?

What will it take?  Will clinicians, payers and managed care groups be forced to sue patients and communities to get the debates going?

Consider hypertension. (more…)

Today’s guest post by Julie Murchinson, Executive Director, Health 2.0 Accelerator, is the final installment in the Disruptive Women Comparative Effectiveness Research smackdown.

Stay Tuned: We will be creating and widely distributing a CER e-book.

The HHS Federal Coordinating Council for CER research posted its report to Congress and the President on Monday describing federal activities on CER. Another report with actual priority suggestions is due to Congress by the end of July. On Tuesday, the Institute of Medicine released their sage advice about the top 100 priorities as well as a report on CER. I found one line, in particular, of extreme importance from the report to Congress:

“National Institutes of Health (NIH) diabetes prevention trial demonstrated that lifestyle change was superior to metformin and placebo in preventing onset of type 2 diabetes.”

Although an extremely complex and closely watched effort across the private sector, this line is the crux of the issue of success for such an endeavor. Of the entire IOM report, I found the following meaningful:

“Compare the effectiveness of traditional behavioral interventions versus economic incentives in motivating behavior changes (e.g., weight loss, smoking cessation, avoiding alcohol and substance abuse) in children and adults.”

How do we know how much the patient – their genomic and proteomic make-up, their lifestyle choices, their home environment, the food they eat, the exercise they do, the sangria they drank last night, the choices they make, the levers that influence their behavior – impacts our ability to understand the health outcomes and economic value of clinical interventions such as medications, procedures or clinical delivery system strategies as proposed by comparative effectiveness research? (more…)