By Michelle King Robson. When I started EmpowHER, I had one mission – to advocate and improve the health and wellness of women. I didn’t care if I had to do it one woman at a time, day by day or even hour-by-hour. I was determined that every woman, young and old, would have access to the information and answers needed to advocate for their own health and well-being.

Now, just over a year later, I am humbled by the stories I hear from thousands of women who visit EmpowHER.com every day. Women are advocating for themselves, for loved ones and teaching other women how to do the same.

For example, one member of EmpowHER was suffering from irregular periods, heavy bleeding and severe depression. She had several procedures to remove polyps, but her depression remained and the bleeding came back. She had no idea what was wrong with her and doctors just recommended more procedures and anti-depressants. In her own words, she was on the brink of taking her own life. For her it was that bad. This woman discovered EmpowHER and, after watching the video where I tell my story, realized there was hope. Within 24 hours of sharing her story with the EmpowHER community, and us helping advocate for her; she was on a brighter path. Now she has a new doctor who has helped her manage her way to improved health. Her life is changed. Forever!

Then, there are times I see others who find advocacy in the most surprising ways, as in this abdominal case. An EmpowHER reader’s partner of 18 years had been having odd symptoms, but neither of them thought much of it. Then one day, after reading an article on EmpowHER about the symptoms of an aortic aneurysm, she realized that he was having the same exact symptoms described in the article. She talked to him about this and advocated that they needed to take action. He saw his doctor that same day and was rushed in an ambulance from that appointment to the hospital for immediate surgery. His doctor told him he had an aortic aneurysm and that he didn’t have time to waste. His doctor told him that his situation was dire, the aneurysm could have burst, and he would have died. The woman came back to EmpowHER and shared their story and credits EmpowHER for saving her partner’s life.

These are just a couple of the stories I hear about every day that reinforce our mission – to improve health and change lives. There are now countless simple and free ways you can get involved to do just that – improve your health and change your life, or that of your loved ones. Here are some ways you can start your own health advocacy journey today:

• Ask your own health question, and receive a guaranteed response within 24 hours
• Share your health story
• Join a group and find women like you

By Regina Holliday. On Thursday night in an office space in Georgetown a crowd was forming. It was an after-hours crowd. The room was filling with advocates, artists, professors, and students. There were doctors, IT professionals, authors, and members of the community. There were mothers, fathers, grandparents and children. They had all come to see an exhibit of art.

This office was the shared space for Clinovations and Osmosis. The wonderful folks at Clinovations had suggested placing one of my paintings in their space to brighten up the blank white walls. Perhaps one of my paintings would support an even greater awareness of the need for patient-centered care. I thought, why stop with one painting why not many? Why not have an entire show and invite people from every facet of health care and beyond? I wanted to create a space for conversation and networking. I wanted people to get together and have some face time surrounded by art.

I envisioned a crowd of people thinking of ways to provide better care for patients everywhere. As I thought about this, I realized that this concept would be the focal piece of the show. Give Us Our Dammed Data is my first crowd-sourced painting, and it features quite a crowd. I wanted to paint a citizen army of patient advocate authors. I knew quite a few from Facebook and Twitter and had read their work. So I asked for suggestions from Dave DeBronkart, Trisha Torrey, Lisa Lindell and Helen Haskell. Between the five us we created a list of potential authors. Helen suggested I contact all of them and ask their permission to include them in the painting. With her help I found their addresses. I really enjoyed the give and take of emailing each author. I explained I wanted to paint them and their books.

And so another crowd gathered in Georgetown on Thursday night. They did not move or laugh. They did not drink wine or nibble the delicate appetizers. Instead, they stared down upon us with sorrowful smiles. In a room usually filled with laptop computers and hushed conversation hung a large painting picturing a crowd of authors. These authors’ books span 15 years, and all of them are telling a very similar tale.

17 authors with weapons in hand stare down upon the viewer. The three panel painting measures 60 inches by 144 inches. It is a very large painting, and yet it is crowded with many who have been hurt and many who have suffered. Every one of them is an author. Most of the authors in the painting took the hurt and outrage they felt about a dysfunctional medical system and channeled that into a book. That book is their shield and their pen is a spear.

These are people who have taken up arms in a battle they had never intended to fight. Note they are dressed only loose robes or hospital gowns. Their feet are bare. They dress as the supplicant or the pilgrim. They are on a mission. For some of the citizen soldiers it has been a very long path.

Journalist Michael Millenson’s Demanding Medical Excellence was published in 1997, and as you read it it is hard to comprehend it was written 13 years ago. It reads like it was written yesterday. So in the far left panel Michael’s back faces the viewer in the piece. The public has not been listening. He is turned toward a fellow advocate who will spread the word. He is speaking to Julia A. Hallisy who looks concerned. And so she should. (more…)

By Archelle Georgiou. Celebrity chef, Andrew Zimmern, said it well in a recent article, “Headlines be damned. Greece is still open for business.”

Well, sort of. . .

My family and I recently returned from a month long trip to Greece. Indeed, it was glorious, and it would be fun to write about the exquisite meals, the inspiring history, and the experience of “moving in” to Lahania, the small village (population: 50) where my father was born. But, that’s not what I’m writing about because, frankly,  I expected that we would have a wonderful vacation. What I wasn’t expecting is that I would get an insider’s view of the Greek economic crisis.

It started the moment we arrived. The plan for our first full day in Athens was to visit the New Acropolis Museum that opened to rave reviews in  2009. It cost $200 million and sits near the base of the Acropolis with a direct view of the Parthenon. BUT….we were promptly informed that the museum was closed. In fact, all of the historical sites were closed due to a 1-day national strike. Two and half million public and private sector workers in Greece were on strike in Athens and other major cities protesting the European Union-International Monetary Fund austerity measures.  This particular strike was scheduled on the same day that the Parliament was voting on a bill to increase the retirement age to 65 and decrease early pensions for workers. FYI…the Greek government has policies that promise early retirement (age 50 for women and 55 for men) to 700,000 people. Warning: Don’t get in between a Greek and their “syntaxi”—their retirement check.

No problem…we decided to spend the day in Varkiza, one of the lovely beaches just outside of the city.
Interestingly, despite the palpable anger and frustration (with their own government, not the EU or IMF), we didn’t see any picket lines or strikers. The beach, however, was packed with locals who were thrilled to have a day off. Little did we know that this was the 5th national strike since February with the sixth strike scheduled for July 25.

Over the course of the next four weeks, we had many conversations about the financial crisis, and there were two consistent themes regarding the root cause: overspending and fraud.

Overspending

There are many reports that suggest that the 2004 Olympic Games put the country into a downward spiral, and this issue came up frequently in our discussions. Costing $11 billion dollars, in addition to infrastructure costs, this was 50% over budget and clearly more than the country could afford.  In our conversations, however, the prevailing perspective was that it was the government’s fault.

Maybe so, but there is a long history of overspending, in the form of entitlements, that the country cannot afford to continue but, yet, the people don’t want to give up.   Did you know:

• As a way to stimulate population growth, women who have three or more more children are given a lifetime stipend. One family that we were with has four sons. All are adults, and the mother continues to receives 200 euros per month…forever.
• As a way to stimulate tourism, the government established incentives for entrepreneurs to build hotels and open restaurants. And, what a deal! The government gifted–yes, paid for…60% of the development costs for new projects. This helps explains why the islands are lined with large, luxurious hotels with a 57% average hotel occupancy rate.  
• All employees receive two  bonuses a year: a Christmas bonus equal to  one month of salary and an Easter bonus equal to two weeks of salary. So, employers are obligated to pay 13.5 months of wages for 12 months of work. Can anyone say pay for performance? Management discretion? Nah..

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Tomorrow, Thursday, August 5^th from 12:00pm – 1:00pm EST Disruptive Women Trisha Torrey, Guide to Patent Empowerment, About.com  (http://patients.about.com/) and quoted in this month’s “O” Magazine, and Regina Holliday http://reginaholliday.blogspot.com/) , medical advocate and muralist, painter of “73 cents,” a depiction of challenges she faced to acquire her late husband’s medical records as he struggled with cancer (“73 Cents” also cover of British Medical Journal 9/09) will be featured guests on the Disruptive Women in Health Care and Real Women on Health Radio! blog talk radio show. The topic for the show is “Patient Empowerment: How to be Your Own Best Advocate.” 

There are two ways to listen and/or participate in what will be fascinating conversations — listen online at http://www.blogtalkradio.com/realwomenonhealth or call toll-free (646) 929-2625.

And speaking of Patient Advocacy and Empowerment, Disruptive Women in Health Care is working on its next e-book which is all about Patient Advocacy.  Start looking for posts later this month.

If you have stories or tips to share on this subject, we invite you to send them in.

By Joy Burwell

You’re Invited to

“Solutions To Scale: Proven Health Care Models for Primetime”

 Wednesday, June 30, 2010

 9:00 – 11:30 am

Breakfast will be served at 8:30 am

Kaiser Family Foundation

Barbara Jordan Conference Center

1330 G Street, NW

Washington, DC 20004

 Raise the Voice, a program of the American Academy of Nursing supported by a grant from the Robert Wood Johnson Foundation, showcases the work of “Edge Runners” – nurse researchers and experts who have developed proven care models and interventions that demonstrate significantly improved clinical outcomes and cost savings.  The Edge Runners will share their experiences to highlight what does and does not work for consideration by federal and state agencies during health care implementation.

Welcome:

• Diana J. Mason, PhD, RN, FAAN, Editor-in-Chief Emeritus, American Journal of Nursing
• The Honorable Robert Borski

Opening Remarks:

• Ken Thorpe, PhD, Department of Health Policy and Management, Rollins School of Public Health, Emory University

Panel One:

• Tina Johnson, CNM, MS, Practicing Nurse Midwife
• Tine Hansen-Turton, MGA, JD, CEO, National Nursing Centers Consortium, Executive Director, Convenient Care Association, Raise the Voice Edge Runner
• Eileen M. Sullivan-Marx, PhD, CRNP, FAAN, Advisor, Living Independently For Elders (LIFE), Raise the Voice Edge Runner
• Deirdre Baggot, BSN, MBA, Administrator for Cardiac and Vascular Services, Exempla Saint Joseph Hospital, CMS ACE Demonstration Site for Bundling Payments
• Sandra Haldane, BSN, MS, RN, Chief Nurse, Indian Health Service

Panel Two:

• Randall Krakauer, MD, FACP, FACR, Head of Medicare Medical Management, Aetna
• Susan Reinhard, PhD, RN, FAAN, Senior Vice President, AARP Public Policy Institute, Chief Strategist, Center to Champion Nursing In America
• Matt Salo, Director Health and Human Services Committee, National Governors Association

Moderator:

• Scott Hensley, National Public Radio

RSVP: Joy Burwell 202-263-2971 or jburwell@amplifypublicaffairs.net

Sponsored by the American Academy of Nursing’s Raise the Voice Campaign. Raise the Voice is supported by a grant from the Robert Wood Johnson Foundation

By Stephanie Mensh. House and Senate Appropriations health subcommittees are in full swing this month. On May 5, the National Institutes of Health Director testified to the Senate subcommittee.

I follow NIH funding because they have a leadership role in understanding and treating cardiovascular and neurological diseases. For example, NIH sponsored the recently-reported landmark CREST study comparing surgery to stenting for patients with carotid artery disease related to stroke, conducted in 117 centers over 9 years.

NIH also sponsored historic research on the clot-buster tPA treatment that reduces morbidity and mortality in acute stroke patients when initiated within three hours of onset.  Stroke is the third leading cause of death and the leading cause of disability in adults. So, I assumed that a lot of privately-supported research was underway.

I was shocked and dismayed to hear Story Landis, Ph.D, Director of NIH’s National Institute of Neurological Disorders and Stroke (NINDS), tell the American Heart Association’s lobby-day lunch attendees that pharmaceutical and biotech companies are abandoning research into acute stroke and neuroprotective drugs that could extend the window for tPA treatment beyond three hours.

This means that NIH will be left to develop new treatments. Unfortunately, only 1% of the federal NIH budget goes to stroke.  President Obama’s proposed 2011 budget for NIH is $32 billion. I’m advocating for the American Heart Association/American Stroke Association’s recommendation that Congress appropriate $35 billion for NIH, so more grants can be made for stroke research.

My husband, Paul Berger, had a stroke 20 years ago at age 36.  Paul wouldn’t have qualified for tPA even if it was available back then because his stroke was the result of a ruptured aneurysm dumping blood in his brain, instead of a clot (80% of strokes are caused by clots).  I am very  encouraged to see NINDS support research into other treatments for the acute phase as well as post-stroke rehabilitation.

May is National Stroke Awareness Month. You can find information on stroke warning signs and risks posted to the NINDS website: http://stroke.nih.gov/ .

Even with emergency medical treatment, many stroke survivors will require rehabilitation and suffer chronic health problems—weakness or paralysis in arms and legs, difficulty with speech/language, and problems with everyday living skills.

Strokes affect people of all ages, including younger people who may lose their jobs due to stroke-related disabilities. The sudden, life-changing nature of a stroke impacts the survivor’s spouse and family as well.

To help make everyday better, my husband and I have written 3 new E-Books on stroke recovery just launched by Positive Power Publishing and  StrokeSurvivor.com:  (1) “Conquering Aphasia & Stroke TODAY!”; (2) “Conquering Aphasia & Stroke for Caregivers”; and (3) “Articles to Take With You.”  Excerpts and details are posted at: http://www.strokesurvivor.com/e-books.html.

By Santi Bhagat, MD, MPH. Health Care Reform is off to a good start.  A couple of days ago, I blogged on the debate between the insurance industry and the administration about the interpretation of this new law.  Hats off to insurers for making the right choice, right away, to heed regulations that are forthcoming from Health and Human Services.   I first heard this through the grapevine at the Disruptive Women Breakfast Series this week from Stephanie Cohen, the expert panelist representing the insurance industry.

The law is intended to require insurers to issue policies that provide a full range of benefits for all children with pre-existing conditions starting in September 2010.  That means insurers can no longer refuse to cover children with pre-existing conditions under their parents’ plans, even if the children never had insurance.

This law has far-reaching ramifications.  A recent story about a newborn who was denied coverage at the age of a mere 9 days highlights how critical this law is.   Born with a congenital heart defect, Houston Tracy underwent lifesaving open heart surgery when he was just 4 days old.  His parents cannot afford insurance for themselves, being small business owners, and have individual policies for their older two sons.  After being charged and given the run-around by the insurance company, they resorted to enrolling their newborn in the state’s high-risk pool.

The big question now is how much will insurers charge for these policies.  If the price tag is too high, parents will not be able to afford to purchase policies, and in effect, coverage will be denied to these children.

It is not clear whether HHS regulations will speak to this issue.  The administration will be watching the insurance industry closely.   So will we.

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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Healthy New Year everyone!

Like many people I’m starting the year with healthy – and preventive care – intentions. How about you?

That put a few items on my holiday ‘to do’ list:

• Get a pap smear,
• Find H1N1 vaccine,
• Wrestle the results of a recent bone density scan (Dexa) out of the hands of the medical center and into the hands of my physician, and
• Confirm with Morris White, my trainer, that I’d continue workouts.

The pap smear was easy – this time. I’d not been able to get one during my late-summer vacation visit to the doctor because the appointment was two weeks prior to the annual date of the prior test. That required another trip. Holiday downtime was a good time to do that. Check that off the list.

In doing so, I finally found an H1N1 vaccine dose! Getting a seasonal flu shot was easy at www.phillyflushots.com, but even after calling several immunization providers and both of my physicians at least twice monthly since H1N1 became available, checking websites and following news reports of shots at pharmacies – well, no success. Luckily, my doctor had just received a few doses of H1N1 that day of the pap smear. Check that off the list.

Results of a bone density scan months ago had still not shown up at my doctor’s office. Holiday time was a good time to badger for the ‘results,’ though it was hardly worth the trouble. Turns out  my physician is not part of that medical center’s ‘network’ and can’t get detailed results. Only a note: ‘normal.’ Sorry, that’s not good enough. Neither my physician nor I know whether there has been any change in bone mass since prior tests. Sure, the test results might be ‘normal,’ but the measures might also be trending in a direction that means I’m losing bone mass, something we both should know about. No check there, still on my list.

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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.

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.

The day before my daughter Elise’s 15th birthday, the new iPhone went on sale.  My birthday was 4 days later.  So Elise figured out we should buy each other an iPhone to mark our big days.  She planned (and saved) for months.  She spent weeks talking to friends, researching apps on line, planning for such accessories as protective covers, and educating herself on how to maximize her minutes.

When the big day came, we made our way to the Apple store and stood shoulder to shoulder with hundreds of others waiting on a very long line.  Two and a half hours later we were invited, actually escorted, in to the store by an extremely friendly, knowledgeable young man who stayed with us during the entire purchase transaction.

He answered tons of questions (mine, not Elise’s…she already knew everything), politely reviewed various functions with me (Elise was extremely patient during this process), and made great suggestions about which plan was best for us.

While we were waiting on line, I looked around at the people waiting with us–we were an extremely diverse group–and wondered (a) Why in the world were we all willing to wait hours to buy a telephone, a very expensive telephone?  (b) How did the folks at Apple get us to this point? and (c) What lessons could we take away and apply to health care?

Here’s what I came up with:

Cool. The iPhone is not your mother’s rotary dial wall phone.  The engineers and creative types figured out how to make a very uncool, but necessary, object not only aesthetically pleasing, edgy, and fun, but useful, convenient, and easy to use.  They stimulated demand.

Now if the Apple  folks could only do for colonoscopies what they did for telephones.  I am only half joking.  How do we make taking care of ourselves and our loved ones cool?  How do we make boring, sometimes not so pleasant preventive measures cool and edgy?

Hospitals are scary places–while some newer facilities have made efforts to look more appealing (open atriums with green trees, brighter colors and lighting), many are dark, smell strange, are old and creaky, have tons of frightening tubes, machines, noises, and for most people are places to be feared and avoided.

What amenities can be added to make it harder for patients to find excuses not to get that mammogram (valet parking, anyone?), not to go for that follow up, not to just give up and leave after waiting for two and a half hours in the waiting room (Elise and I waited that long–and the friendly folks at Apple handed out water, and updated us on our progress).  The only water I could find in my local hospital emergency room last week (when we were there with my son) was a nasty water fountain that had stuff in it that would make a petri dish cringe.  There were vending machines with chips, candy and soda, but it was broken.

Service. Imagine for a minute that when you enter a clinic, doctor’s office, or hospital, you are accompanied by a knowledgeable, helpful, pleasant individual who can speak to you in a non-condescending, judgmental manner, in language that you understand.  Someone who can help you navigate a complex system of decision making.

Quality. Pretty obvious attribute.  Quick–think Mayo, Cleveland Clinic, Johns Hopkins.  What is it about these institutions that people think of when asked to list “best” hospitals.  How do you (should you?) rate different doctors? Nurses?  Most people buy the iPhone because they believe they are buying a high quality product.  How can we be sure we are buying high quality health care?

It’s interesting when you look at the literature.  Quality is defined in many different ways by health care professionals and by patients.  Sure there’s overlap.  But in addition to better health outcomes, living longer and better–patients highly rank items such as convenience, hours of operation, waiting times, and location as quality indicators.  Apple stores have better hours than most clinics and physician offices.  My dog’s vet has better hours than most doctors.

Value. Why was a 15 year old willing to save her hard earned money for an expensive phone (and why was I willing to pay not insignificant monthly charges) for the iPhone?  Because we thought it was worth it.

If only we could figure out a way to get people to see that it’s worth it to exercise, eat healthy, get annual check ups, not smoke… and get that colonoscopy.