I say “once upon a time” because today, that scenario is mostly a fantasy.  And sadly, today’s story doesn’t always end with happily-ever-after – for anyone.

Providers went to medical school to learn to heal and help. Instead they carry excessive patient loads amidst decreasing reimbursements, spend a small fortune on malpractice insurance, and reject some patients who don’t have the right kinds of payers, or who take up too much time with difficult diseases or comorbidities. They are frustrated with their inability to deliver the care they prefer to deliver, but they must protect themselves or they will lose their practices.

Since the passage of reform, insurers have been forced to realign their requirements and services so they can continue to suck money from employers, patients, providers and the government. They spend billions on lobbying efforts, and reduce their provider reimbursements – at the expense of patients who are continually denied the care they need. A million families go bankrupt each year because they erroneously believed their insurance would cover their care when they needed it.

Those patients, accustomed to provider paternalism and decent payment coverage, find themselves blindsided to this devolved system that no longer provides the care they need and deserve. They get sicker. They die from medical errors. They lose their homes. No one has ever even suggested, much less taught them how to stick up for themselves or take responsibility for their own medical decision-making.

Patient Advocates to the rescue! Patient advocates are the only participants in the healthcare equation who may deliver improved outcomes for everyone  – providers, payers and most of all –patients.

When an advocate accompanies a patient to an appointment, less time may be required because the advocate will facilitate communication and the process. In a hospital setting, a bedside advocate will double check drug dosing and insist on hand washing, keeping the patient safe and providers out of hot water.

Payers benefit from the efforts of patient advocates, too.  Advocates help patients understand when a generic drug makes sense, or question a diagnosis before the wrong treatment is dispensed or performed, and therefore must be reimbursed. A billing or claims advocate knows how to file paperwork correctly, or reduce a hospital bill, saving time and expense for payers and patients.

Of course, advocates provide the biggest benefits to us patients. We can rely on our advocates to be focused on our improved outcomes and well-being.  Just like – once upon a time — we relied on our doctors.

Talk about disruptive! Rare is the case that an extra person in any relationship can improve the outcomes for everyone involved. 

But this is no fantasy. Patient advocates are skilled and ready to help.  Including an advocate in the medical care delivery equation can help us refocus on the possibilities of the good care that providers wish to deliver, payers are willing to pay for, and patients deserve to get.

Related posts:

1. The Ethics of Patient Advocacy
2. On the Meaning of Patient Advocacy
3. Calling Patient Advocates–Share Your Story

Our series on Patient Advocacy kicks off with today’s post.  Over the next week, we will hear from a variety of women about their personal journeys and professional experiences.  Early in September we will compile these posts, along with our August Man of the Month’s and blog talk radio interviews, into an e-book.  As always, we look forward to your comments.

By Stephanie Mensh. When my husband, Paul Berger suffered his stroke, we were both in our 30′s, established in our careers, and planning for the future. We wanted to continue our active lifestyle, which meant overcoming Paul’s disabilities and pulling services out of many different organizations, each with their own roadblocks. I became Paul’s advocate. Here are my tips for successful advocacy to get what your survivor needs from the system.

There are three types of advocacy: (1) personal advocacy by individuals, family members, friends or others to obtain benefits and services from public or private service providers; (2) legal advocacy by a lawyer to navigate legal processes; and (3) political or policy advocacy by lobbyists and concerned citizens to change government systems.

Personal Advocacy

Most caregivers learn to be personal advocates by “on-the-job” training, usually starting with hospital, medical, and therapy providers, then health insurance. Here are some tips to help you improve your personal advocacy:

• Make a written list of your needs and questions, and go after the most important first.
• Research as much as possible from insurance policies, medical brochures, treatment plans, and other sources.
• Talk to other caregivers and ask for advice, especially for the names and phone numbers and emails of people who were helpful to them.
• Call and ask for the person or department that specifically handles the services or questions you need answered. Ask for the exact spelling of that person’s name.
• Write down the date, time, person’s name, and topic discussed in any phone calls. Keep this in a file with your other materials and research.
• Be persistent. This may mean calling every day. This may also mean asking another family member or friend to call on your behalf.
• If you feel that your questions are not being answered, or you are not getting the appropriate services, find an outside professional, agency or organization that can intervene on your behalf.

Legal Advocacy

Sometimes the only way to get the services or resources you need is by taking legal action with the help of a lawyer.

Legal advocacy does not necessarily mean going to court. Most often, a lawyer can advocate for you through telephone calls and correspondence. Most legal actions relate to contract or financial problems, such as insurance companies paying claims, enforcing federal protections regarding employer’s sick leave/family leave  policies, or negotiating with creditors to prevent foreclosure or bankruptcy.  If you have been denied social security disability or other benefits, an attorney can file an appeal.

When Paul had his stroke, we decided to refinance the mortgage on our house. Our lawyer prepared a specific “power of attorney” so I could attend settlement alone, since Paul was too ill to leave the hospital.

Attorneys specialize in different areas.  Look for one who specializes in your particular problem. Ask your family lawyer to refer you to a specialist, or contact the local bar association, or local legal aid organization. The American Bar Association has online referral links: http://www.abanet.org/legalservices/findlegalhelp/home.cfm

Don’t wait for a family crisis.  It is never too early to have a will, a power of attorney for financial/business affairs, and a power for health matters, as well as a living will that will provide instructions on life support if you become critically ill. 

Political Advocacy

Finding services for stroke survivors can be challenging, especially once the “acute” phase – the immediate hospitalization – has passed, since the types and costs of available services vary so much from one area to another.  Speech and physical therapy are often limited, and vocational rehabilitation services and related case management may have waiting lists.

When you need services that are not provided in your area, you may need to change the system — by translating your personal advocacy skills and passion into political or policy advocacy.

You can start by writing letters or emails, and visiting your elected officials or their staff. Your local city, county and state officials want your vote in November — so do your US Congressman and Senators.  They want to hear your concerns and find ways to help. You can do this on your own, with your survivor/family member, and/or with other caregivers and survivors.

The first step is to learn about your elected officials — who they are, where their offices are located, how to contact them, and details of their policy interests. For example, learn what committees they serve on, and what bills they have drafted, supported, and voted for.  Most have web sites with this information, and their offices will answer questions and mail you additional material.  For the US Congress, http://www.gpoaccess.gov/ . 

My volunteer efforts led me to an appointed position on the local citizen advisory committee that oversees the county’s human services programs.  I have a voice to support programs for people with disabilities, which has become crucial during these times of state and local government cut-backs.

On the state and national level, Paul and I participate in the American Heart-American Stroke Association’s Lobby Day in Washington, DC, and continue our advocacy from home as part of the AHA/ASA’s  “You’re the Cure” grassroots network — an easy way to stay informed on state and national issues. To join, visit: http://www.americanheart.org

Related posts:

1. May is Stroke Awareness Month & Congress in High Gear on HHS Appropriations
2. Calling all Patient Advocates
3. October Man of the Month – Paul Berger

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.

This is Julia A. Hallisy, whose daughter, Kate, fought a losing battle with cancer in her short life. In 1997, Julia was well aware of the failings in our health system as she desperately tried to get an oxygen machine so her ten-year-old would be able to breathe as cancer was attacking her brain.

On the right side of Michael stands Janet Lynn Mitchell. In her book Taking a Stand she recounts her battle to walk after enduring 10 knee surgeries. Her many surgeries were due to a mistake during her original surgery. This was covered up and parts of the medical record were altered and “lost.”

Below Janet sits Martine Ehrenclou, author of Critical Conditions. Martine spent over a year guiding both her mother and godmother through medical wilderness. She saw so many hazards and “never events.” She was determined to create a book to help others survive their hospital stay.

To Martine’s left sits Evelyn V. McKnight, author of A Never Event. Evelyn contracted hepatitis along with 857 other cancer patients due to reused contaminated syringes.

Beside Evelyn sits Elizabeth Cohen, Senior Medical Correspondent with CNN. She will soon publish The Empowered Patient: How to Get the Right Diagnosis, Buy the Cheapest Drugs, Beat Your Insurance Company, and Get the Best Medical Care Every Time. She has used her years as a patient and a patient advocate for her family members to help others. Informed by years of reporting medical tragedies as a reporter, she too felt she must write a book.

In the far right panel on the lower right side sits Sorrel King. Hers is one of the sadder stories in this piece. She alone stares out of the frame and seems to make eye contact with someone who must be quite small…. Sorrel lost her daughter Josie. Josie was only 18 months old. Josie was recovering from a bad burn when she died from severe dehydration and unfortunate dose of narcotics. Sorrel knows intimately the importance of patient and caregiver access to medical record. Being able to read the orders in a record can save a life.

Seated behind Sorrel to the left is Lisa Lindell. Lisa wrote 108 Days. In her book she tells a day-to-day account of her successful campaign to keep her husband alive. She was astounded when she read her husband’s medical record. The nurse’s notes specified that she had an “unreasonable” belief that her husband should live. Beside Lisa sits Patrick Malone a malpractice attorney and patient rights activist, who wrote The Life You Save. Patrick lists nine necessary steps to getting the most out of the current medical system. The number one step is: Get a copy of your medical record.

Behind Patrick to his left stands Jari Holland Buck. She wrote Hospital Stay Handbook. She would understand the frustration of Lisa Lindell, as she too, kept her husband alive during his hospital stay.

Beside Jari stands Margo Corbett, the author of The Savvy Patient Toolkit. She became inspired to advocate after she was told her husband may not survive the night. She used all of her talent and past job experiences to create a handy checklist for patient care.

To Margo’s Left stands Carolyn Oliver,MD, who wrote Cautious Care: A Guide to Patients. This was the first patient empowerment book I ever read. Fred Trotter gave me a copy after I asked an access question before the crowd at Connect 2009 in DC. I loved it its simple and clear instructions.

Next in line is Sanjaya Kumar, MD author of Fatal Care. Dr. Kumar is dedicated to the improvement of patient safety and real time collection of data.In the center panel to left stands John James. He lost his son Alex at the age of 19. John was astounded when he read Alex’s medical record. He saw so many mistakes and examples of miscommunication that led to Alex’s death.

To John’s right stands Sandra Gilbert author of Wrongful Death. Her husband died during routine surgery. Her story recounts her efforts to grieve while trying to find out what exactly had happened.

In the center stand the ones who lived. Dave Debronkart author of Laugh, Sing and Eat Like a Pig and Trisha Torrey author of You bet your life, The 10 Mistakes Every Patient Makes complete our 17. They had a very different experience. They got access to their medical records; they fought the system and won. The title of the piece is a play on the words Dave spoke: “Gimme my damned data.” His phrase described the anger and frustration of all of us who have suffered so in a system where a patient sees a record only as an afterthought. I decided to expand on his comment and add an actual dam.

So in the middle of this painting stands a version of Hoover Dam labeled Meaning Use, HITECH. The data may still be dammed, but now it has begun to flow and it is pouring right into a laptop computer. We may have to wait three days, but due to government action, we will get access to our records.

This has been a long post. I may have lost some of you in listing all of the advocate authors. I hope you are still reading for there are two others in this picture.

To the far left stands Clay Shirky author of Cognitive Surplus, and to the right is Melinda Blau, author of Consequential Strangers. They are feeding the pack mules.

Every army must have pack mules. They supply the troops; they carry the supplies and are sure-footed on the mountainous path. If you haven’t read the books I would recommend them to be read together. Melinda reminds us of the power of all the people in our life. It is the friend’s friend who often gets us the job or finds us the right doctor. Clay Shirky informs us of the inherent potential in a world where thousands of people log on and data crunch with no other goal than doing good for others. He sees the future of medicine when it combines with the data aggregation of sites such as Patients Like Me.

So this is the story of Give Us Our Dammed Data. It is a painting that had 17 advocate authors. I could have painted more. I could have covered every wall in the Clinovations office space with advocates who are fighting for us. I stopped with 17.

Why? There are 17 people in 73 Cents. There are 17 pills in another piece at this exhibit, Sutent in a Shadow Box.

And I took up my shield and sword on June 17th 2009. My shield is a canvas and my sword is a paintbrush. I am so glad my art can create a space where these authors can look upon us as the mighty army they are. I am in awe of the work they have done. I hope you will feel the same.

Related posts:

1. Why I Didn’t Sign the Declaration of Health Data Rights – Yet…
2. Calling Patient Advocates–Share Your Story
3. Patient Advocacy – When Disruption Creates Win Win Win

Related posts:

1. Calling Patient Advocates–Share Your Story
2. The Ethics of Patient Advocacy
3. Health Reform: Patient Rights, Patient Reponsibilities

My second thought concerned forests, falling trees and sounds we may or may not hear.

The history of health care in the United States is, in large part, defined by sound policies and vital programs that are not accompanied by effective outreach to  the patients and consumers who have the most to gain from these innovations.  Thus, new provisions expanding preventive coverage have the potential to be like the proverbial tree falling in an empty forest.  If we don’t do a good job letting people know these services are more accessible, will they take advantage of them?

I think of the millions of people who are eligible for Medicaid or for Children’s Health Insurance Programs who aren’t enrolled.

I think of the widespread confusion that existed in the early days of the Medicare Part D prescription drug program until several organizations stepped in to conduct coast-to-coast information sessions with seniors.

And I think of the story that just appeared in the New York Times (http://www.nytimes.com/2010/07/15/health/15chen.html?_r=2&ref=health&pagewanted=print) regarding the growth in usage of the “medical home” model for health care.  (I prefer the term health home, but that’s for another post.) As Dr. Pauine Chen pointed out in the Times, empirical evidence is showing that the medical/health home – shorthand for greater care coordination between the patient’s primary care physician, specialists and other health care professionals – is working.  A demonstration project sponsored by the American Academy of Family Physicians showed that the new model was improving quality of care, efficiency of operations and physicians’ job satisfaction.

But patients hated it, because no one bothered explaining to them why their one-on-one relationship with their health provider was being replaced by a one-in-three or one-in-four relationship with multiple providers, even if it resulted in better care.

And, thus, does this new innovation in health care delivery fall within the proud history of U.S. health care in which great ideas are not linked with communication to the patient.

As health reform is implemented, both the public and private sectors need to do better, beginning with outreach to let people know about the new preventive care coverage and, more importantly, to ensure that Medicaid expansion and the new subsidies to help make private health insurance more affordable affect the people for whom they are intended.

Related posts:

1. Health Reform: Patient Rights, Patient Reponsibilities
2. The NHMA Forum on Health Care Reform offers an opportunity to impact health reform legislation
3. Health Reform: The Pursuit of Progress

To help improve things for children with CMCD as they transition into young adults , Physician-Parent Caregivers (PPC), is launching EMERGE–a new campaign  next week…stay tuned…I will be blogging more about that in the coming weeks.  

In the meantime, I would like to introduce a special PPC young adult leader, Amy Long.  Amy is one of America’s 8.2 million amazing young adults with CMCD who push through barrier after barrier and never give up on their dreams.  Amy gave me permission to share her first person account of what it is like to be a young adult with a chronic medical condition.  She calls it, the Google Circus.

GOOGLE Circus

Five years ago, I aged out of my pediatric skeletal dysplasia clinic (a place for kids with bone diseases).   I will never forget my first two adult medicine experiences….The first happened late one Fall evening. 

I was in college dorm my senior year and I woke up  from a late afternoon nap with a terrible headache, flashes of light and floating dots in my vision. I have a rare connective tissue disorder and form of arthritis called Kniest Syndrome that puts me at risk for a detached retina.  The flashes of light and floaters are common symptoms of retina disease.  Retina detachment is only fixable in the first 24 hours. I immediately called Student Health who told me they could get me into see an eye doctor next week.  I tried to explain that I couldn’t wait that long but no one seemed to take me seriously. All the doctors had left for the day. I called a friend and we drove the Emergency department.

We arrive. I spell Kniest no less than 3 times for the tirage nurses. They lead me back to the eye exam room and leave the door open with my chart hanging there. The doctor grabs my chart, starts to come in, looks at my file. His eyes widen and he backs out of the room. Through the open door I watch him try to Google Kiiest Syndrome.  He flips through the links and then finally after five minutes comes back in and sheepishly asks me, “So what exactly is going on?” I tell him, yeah I have a migraine-like headache, and I am seeing stars. I have a collagen disorder that causes high myopia and thus very fragile retinas. “Yes, yes, how exactly do you spell your condition?” I spell Kniest 2 more times.  I then watch him turn around and type Kniest Syndrome into Google.

That night had a happy ending– I had my first migraine, not a retina detachmen,t but I couldn’t help but be terrified of what could have happened had I been really sick and I had not had adult medicine doctors who understood my disease.

A few months later it was time to find a new orthopedist because I had a nagging, worsening hip pain.  This time I had traveled six hours by car with my Mom in tow to go see an expert in adults with arthritis.

The Orthopedics department was brand spanking new and is entire separate wing of the hosptial, Mom and I decided this was a good sign. Mom and I had taken two bets that morning, one, that I would be the youngest patient by 4 decades at least and two that the doctors would have no clue what Kniest was…I lost the first bet in the waiting room, although the majority of the patients were over the 4 decade line, there was a football player who destroyed his knee and a lady about Mom’s age.

I was absolutely shocked when we were called in exactly at our appointment time, seriously Mom and I nearly passed out from shock. This may in fact be the first orthopedist appointment ever that we were actually called back on time. I passed the tech my X-rays and sat down in the consult room. The consult room was conveniently located right across the hall from the X-ray reading room, putting mom and me in front row seats for the circus.

 A crowd began to gather, Mom and I exchanged knowing glances, shoot…Then because the circus needed some PR, one of the white coats, exclaims quite loudly “Holy Moly, would you look at that…” Even more people gathered around my films.  I put my face in my hands. Mom sighed and said “We should sell tickets.”

That was my transition experience.  I was either a circus side show and/or no one had a clue how to care for me. The Google circus was terrifying, frustrating and completely unnecessary.  There is a better way to do transition both for the patients and the doctors.

Today I had a totally different experience . I just moved to a new city and am starting my first job as a pediatric resident (aka intern…aka doctor in training).  Upon moving here I was referred to the Skeletal Dysplasia TRANSITIONAL clinic at the childrens hospital.  I was a little skeptical at first because I had not seen pediatric doctors in five years. Would they treat me like a little kid?  Would they expect me to bring my parents? (who live 500 miles away)  Would they bring in 50 residents/medical students (my colleagues?!?!) to see the new weird case?

I was led to a cheerful exam room with murals and bright colors. But despite the pediatric surroundings I was treated as an adult.  Only one doctor came to see me and he was well versed in my disease both in childhood and in adulthood. My physician spent over an hour with me reviewing my current health concerns, my past history and discussing all the exciting things that go with starting my first real job.  He spoke to me as a partner in my care and encouraged me to participate in coming up with a treatment plan. He helped me line up referrals for orthopedics and an eye doctor in town.  He also helped me come up with a plan to navigate some of the more challenging aspects of my new job.  We came up with an emergency plan if I get hurt or sick so that we make sure I am cared for by doctors who know about my disease and know me.

It wasn’t rocket science, it wasn’t even an act of Congress, what happened today happened because a small group of physicians, parents and young adults in the region have realized that children with CMCD here grow up but rarely do they grow out of their need for specialty care.  For a variety of complicated reasons, adult medicine rarely gets enough training in treating childhood onset diseases much less helping young adults thrive as independent and self sufficient. It takes clinics like the one I visited where pediatric and adult doctors work together to care for young adults with CMCD.  We have a looong way to go before this is the norm but as a patient and as a doctor I am excited about being part of the movement that makes it happen. 

Because no one should have to be a part of the Google circus.

Related posts:

1. The Fate of Children & Young Adults with Chronic Medical Conditions & Disabilities.
2. Run for Cover: Young Adults with Chronic Medical Conditions & Disabilities
3. Got Meds: Drug Adherence for Young People with Chronic Medical Conditions

Over the years, I have noticed an exponential increase in the number of professional health advocates and individual patient advocates.  Many advocates, not surprisingly, have been personally affected by illness–and the unbearable frustration that comes with having to not only focus on healing, but navigating multiple dysfunctional health care systems along the way–whether it’s poor quality care, misinformation, lack of information, difficulties finding health care professionals who meet individual needs, to name a few.  

Advocates are certainly not new, but what has changed are the availability of new online and mobile tools to connect advocates, their families, their friends, and others with similar situations.  The ability to organize, advocate, tell your story, through various mediums has fueled a new phase of patient advocacy– and given voice to what I see as a revolution.

Disruptive Women in Health Care is working on its newest e-book which will feature posts by a wide range of patient advocates–these stories and shared experiences will not only move you but will provide useful information so you too can advocate.  

Look for these posts throughout the summer, and send us your stories as well.

Related posts:

1. Calling all Patient Advocates
2. Share Your Story: Gender Inequity in Healthcare
3. Have You Had Medical Care You Thought Was Unnecessary? Share Your Story

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

Related posts:

1. Nursing Provides Cost-Effective Solutions for Improving Health Outcomes
2. Health Care as a Right
3. To Regulate—Deregulate? It’s Not So Simple

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2. Poll: Female Attitudes About Appearance
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 Today, according to AHA’s press release- They are not supporting playing all video games in an effort to promote a healthy lifestyle- only the Nintendo games such as WiiFit™ Plus and Wii Sports Resort™ software for the Wii are supported by the AHA.  The AHA’s logo will be found on these products beginning this summer. 

 The AHA is “trying to reach people where they are.”  They suggest that if you don’t move at all- move some.  If you move a little, move a little more.  In essence, if you go outside and play sports or are already active- they are not suggesting that you come inside and play video games- rather, they are trying to get those people who play video games (or are otherwise) mostly inactive- to start doing something active.  They figure, if you like playing video games and typically play video games with your thumbs while surfing the couch- perhaps you could get a little exercise by playing active video games. They are targeting the “no physical activity” group and trying to get them to move!

So, as one would expect- there is controversy over the two companies working together.  Some people believe that both Nintendo and the AHA see a significant return on their partnership investment.  But the AHA has suggested that this is not the case.  Nintendo has contributed $1.5million to AHA to fund a prevention platform aimed at informing Americans about heart disease and stroke prevention.  Another important consideration to keep in mind is that Nintendo is not the only “active-play” video game company out there.  Sony PlayStation released the “EyeToy” years before the Wii and it offers many hours of fun, active gaming as well.  The EyeToy is fun because you can see a video projection of yourself in the game, rather than controlling an avatar as with the Wii games. Microsoft plans to release Project Natal later this year- these games will also offer hours of active gaming fun! There are a number of other off-the-shelf gaming devices that promote active gaming- the consumer should be encouraged to seek the game that would be most fun for them. 

Perhaps most exciting, however, is the Innovation Summit that the AHA intends to host.  With $350,000 support from Nintendo, the AHA will bring together “Thought Leaders” in the area of health care, research, physical activity, fitness and video gaming to look at the synergies and potential benefits of active-play video games and physically active lifestyles.  Now that is exciting!  Finally!  The game industry, researchers and health care industry all together in one room to envision the future!  Wow!

Related posts:

1. Gaming Your Way to Good Health
2. April Man of the Month – Doug Goldstein
3. Blog Roundup: Daschle, HHS, and American Heart Month

Interestingly, when I looked into the issue, the answer seemed to be even less clear-cut than the therapy. In fact, there are no guidelines for stopping HRT.  Granted, until the Women’s Health Initiative started to reveal the dangers and risks of HRT, there was no real reason to stop therapy, (although, I’m of the mindset that there’s really no good reason to start HRT).

Fortunately, researchers are finally starting to look into this issue although study findings (which are published in the online edition of Menopause) highlight that the practice of stopping HRT is intuitive and not evidence-based.

So, what did they learn?

Among 438 group practice physicians surveyed, an overwhelming majority believed that women should taper HRT, with most believing that the best strategy was not only to slowly decrease the dose, but also to reduce the number of days HRT was taken per week. However, they had no suggestions with regards to how to taper use of HRT patches, even though the patch is increasingly being recommended and touted as a safe solution to oral hormone therapy. (Notably, like the evidence from this particular study I am talking about, the evidence that shows the safety aspect of the HRT patch is mostly observational, meaning that it is subject to personal bias.)

More interesting, however, was the finding that the majority of the physicians who participated in the study were more strongly influenced by their personal beliefs than by colleagues’ actions or most importantly, by a woman’s preference. In other words, physicians are not asking their patients about what they would like or if they have any thoughts about stopping therapy. More shocking was the fact that only 2% of physicians surveyed relied on actual evidence to stop hormone therapy. Physicians who indicated that they believed that some action should be taken if symptoms returned after stopping hormones overwhelmingly turned to behavioral changes or exercise, not to alternative therapies such as herbs.

In an era of evidence-based medicine and strategies that integrate eastern and western philosophies, why are our physicians relying on their own personal belief systems rather than real facts? Why aren’t they asking their patients how they feel about stopping therapy or if they have fears about symptoms returning and then thoroughly exploring alternatives ? Are these findings in a vacuum or will they be found on a broader basis? Does the problem lie in fact that there are no standards?  What’s more, why hasn’t the American Medical Association or American College of Obstetrics & Gynecology devised guidelines for stopping HRT therapy? Why hasn’t the Food & Drug Administration demanded this guidance in labeling?

Finally, why do we continue to play Russian Roulette when it comes to women’s health? Isn’t it time for a change?

Let’s start with HRT. There are a lot of folks out there who continue to espouse the benefits, deny the risks and ignore the facts. Clearly, this story continues to unfold. Unsafe medical practices are even more unsafe when they are not backed by evidence, right? Is HRT the exception?  What do you think?

[This post, appeared in part, on Flashfree on May 10, 2010.]

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2. When Evidence is Code for Cost Control
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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.

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Kelley, Cassie and I have a great deal in common, especially our enthusiasm to talk – to share our knowledge and experiences with other women. Kelley is host of Real Women on Health!,  an Internet radio program that has just made the exciting move to TALK RADIO….and they have invited me to  be the show’s DC Health Correspondent, providing “inside the beltway” health policy updates for the Real Women on Health! talk radio show.

Here are the details:  please tune in and join the conversation (call in number is 203-845-3044).  Real Women on Health! will be broadcast at 8:00 pm ET, Wednesdays on News/Talk 1400 WSTC 1350 WNLK (Cox Media Group)  and will also available streaming online starting April 21^st.

 The dynamic one-hour show will be a conversational platform for featured guests and real women to share their collective wisdom and subtle secrets on topics that matter most to them.

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Just in time for Disruptive Women’s April 29th breakfast: News (Hot) Flash: Sex, Drugs, and Menopause. (you can register here and of course, MEN are more than welcome to attend.)  We will be showing a sneak peak of the soon-to-be-released movie, Hot Flash Havoc.

Estrogen and Menopause:  Lots of studies, lots of data, lots of unanswered questions.

If you are comfortable, feel free to share your experience with the mother of all hormones.

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During the recent Project HealthDesign workshop, I was struck by the question of what ODLs have the potential to do to engage patients in their health. Will ODLs be the patient’s true representation of issues they own and manage as part of their health or will they be factoids about patients that doctors use but patients don’t truly own? Will ODLs management come naturally or will managing them be an arduous task for the unfortunate individuals who may “need” to manage them? Will doctors be able to synthesize ODLs into clinical practice or will they be too overwhelmed to incorporate another set of information they may not know how to handle or not be remimbursed to pay attention to?  Will ODLs evolve with medical research such that they will be taken into consideration as part of future discovery or will ODLs always be an afterthought left to discovery at the point of care?  Much remains unknown about the fate of ODLs, but there is strong potential for ODLs to be the patient engagement hook in the years to come.

Three big “ah-ha’s” came this week as I listened to grantees develop, describe and integrate ODLs into their research project plan.

1.       ODLs development may depend upon the disease – As we know all too well, there are some diseases we understand well and some we do not. For those we know well, ODLs may be more “top-down” or centered around clinical relevance because healthcare providers feel they know what works best for the patient or for the efficiency of the treatment of that patient.  If we do not understand a disease well, ODLs may, in fact, be more “bottom-up” or grassroots in their development because they are more about disease discovery from each and every patient.  We may learn what makes the disease tick through the experiences and narratives of the patient.  We may discover an entirely new pattern or create a new way to help patients self-manage between visits based on the experiences of other patients.  ODLs in the world of little clinical evidence may become the evidence that causes discoveries in the personalization of health care.  Although this difference in ODL discovery, development and utilization does seem to be emerging, I question whether the derivation of ODLs will have varying results in engaging the patient.

2.       ODLs will be best managed if co-managed – While sensors exist and are rapidly evolving, tracking and managing an ODL is likely to be a conscious task with today’s technology. Although the greatest researchers are working hard to make ODL capture as seamless as possible in their projects, the fact is that managing them will be a patient’s job to some or a large extent.  To make this worthwhile for the patient, the patient needs to see value from tracking and/or managing that ODL.  If a clinician does not understand how to properly synthesize an ODL as part of managing a patient’s care, neither the patient nor the clinician will see much value in ODLs.  An incredibly simple yet poignant discovery was made this week in the importance of co-managing ODLs through a co-designed care plan…one that satisfies the questions, interests and willingness of BOTH the patient and the clinician in identifying, documenting, planning and managing ODLs as part of a patient’s care plan.  Is this novel…co-management?  We’ve heard this term before in other forms…shared decision-making, activated patient care, etc., but do we really understand the power of this concept to engage patients?  ODLs may be a new opportunity for the medical industry to engage patients in aspects of health they understand and may be able to control.

3.       ODLs may create new relationships in patient care – We patients love our doctors and place a premium on more time with our doctors.  We bring our doctors information we collect from the web and trust our doctors to use it.  We believe that our doctors know best.  However, many of us are increasingly seeing others on the care team…nurse practitioners, mid-level clinicians and health coaches…a potentially growing trend in our evolving policy landscape.  Our doctors are expanding our touch points to handle the complexities of our diseases.  ODLs may add an entirely new dimension to the complexities of our diseases in ways that are foreign to the episodic visit model.  ODLs may drive streaming data to a care team member or be managed through a set of automated algorithms in an electronic system.  Regardless, the reality is that doctors may delegate ODL management to others on the care team.  This reality may both increase patient engagement with someone in patient care, but may also be a hard pill to swallow for those of us who really like our doctor.

We are in the midst of an unprecedented opportunity to modernize our healthcare system and are placing bets on our ability to engage patients appropriately by educating them about how we are doing it. Though still in their infancy of development, ODLs may be a critical component to truly engaging the patient because they are important factors the patient understands and may have interest in managing…thus improving health and health care for all who care.  I am excited for the future of ODLs and thoughtful about their approach…let’s hope other patients are, too.

This post is cross-posted on the Robert Wood Johnson website.

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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.

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By Stephanie Cohen.  This month’s health insurance nightmare: Dad is still paying for his daughter’s insurance — and no one is happy.

The situation: I received a call last week from a client whose daughter recently told him she hates her insurance “because it does not cover anything.” He phoned me to see if she had a real gripe, and if I could help him find another policy with better coverage for her.

The problem: It turned out that her policy had a $5000 deductible, which did not include coverage for dental or vision doctor visits. Since she has an entry-level position and not a lot of extra spending money, I told her she had a choice.

She could choose to pay more per month to lower her out-of-pocket expenses, but her monthly premiums would be higher. Since her father was paying her premium, and was happy to do so, I decided the best policy for her was one with a higher premium and lower expenses.

The solution: The decision to pay for an adult child’s health care is a personal one that each family must make, of course. The reality is that once a child turns an age selected on the policy by the plan administrator based on the rules of the state and the size of the employer, they are no longer considered a dependent.

Many times, the insurance company does not notify the parent or the plan administrator that the student has been dropped. The student typically finds out when filling a prescription or when receiving services. 

Keep in mind that it is the parents’ responsibility to notify the carrier that the student is or is not a full-time student and is eligible for coverage. The student is responsible for having a student certification form completed and signed by the bursars office proving they are in school fulltime with 12 plus credits.

If I were the Health Insurance Ambassadors: All students would have to prove they had coverage or they could not attend school.

Although with the recent health reform legislation there is now a new Federal mandate to allow children to be on their parents health plan until 26, it still may be less expensive to insure that child unto themselves rather than remain on the parents plan.  Obviously, the rates will be much lower for someone who is much younger.

The painful truth: Parents can analyze the cost of coverage through the school or an individual policy versus the cost of keeping the child on his/her plan. If the parent has other children on the plan, it rarely saves to pull one child off the plan.

 I encourage you to share your insurance nightmares with me.

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When a company follows capitalistic principles, the goal is to increase value by offering better services at a lower price. The company strives to improve their bottom line by offering more value than their competitor, in an effort to put their competitor out of business. Offering good customer service complements this strategy. In industries other than health care, the result is a benefit to the consumer: quality products and service at a lower price. Southwest Airlines, for example, employs a very effective social media presence. They respond to complaints tweeted by customers, which is has garnered the company praise in addition to a loyal customer base. But does this consumer-centered strategy translate to health care?

Mayo Clinic is held as a model for value in health care, but attributing their success to “consumerism” is off-base. The new media strategies being presented by health care institutions at SXSH essentially boiled down to damage control by tending to disgruntled Twitterers, and analysis of the types of complaints being registered. Though claiming to be influenced by social media mavens at Mayo’s Rochester flagship, the strategy is misguided and far removed. Mayo Clinic works because of a philosophy of care that puts the needs of the patients first—which does not equate to reactionary PR moves on social media sites. Absolutely nothing about their strategy distinguished it from other industries—and in the context of health care, replicating the strategy of Southwest Air and its ilk borders on insulting. Mayo Clinic avoids the noisy Twittersphere when addressing something as important as patient care; when a complaint is registered, that’s what their specialized center for patient service is for. Their Sharing Mayo Clinic blog allows a community of patients, staff, and families to form, which anticipates service problems before they even occur. This is the absolute obligation of companies in charge of delivering health care to a society.

My issue is also a philosophical one.

We all agree that a crucial part of reforming this system is expanding access to care, but new media strategies that are effective in other industries become empty gestures if used, unmodified, in health care. Consumers who can buy greater quantities of higher-quality goods reap the benefit from sellers’ efforts to compete. But what about those who can’t afford it no matter how cheap it gets? Southwest Air, in theory, is trying to put other airlines out of business by offering the best value. Are we trying to put hospitals that are struggling out of business? If you’re truly concerned for the health of the community—for social health—it seems those are the places that need more support, rather than be subjected to market forces.

Patients, on one level, are consumers in the sense that they deserve good service when they walk into a doctor’s office or hospital, but even that is a misnomer; responding to complaints and shortening the wait time is common civility, not a whole customer service strategy. Health is life, it is who you are—it is not something that is consumed, and referring to patients as “consumers” is careless. The PR departments of health institutions must not forget that it is the health of their “customers” that is most important, and are therefore obliged to take their social media initiatives a step further than companies not involved in the health care field. Want to strive for the success of Mayo Clinic? Drop Twitter and start focusing on people- and patient-centered care.

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Think about it.  We live in a market-driven economy where businesses thrive on getting us to consume more than we need, whether it’s a house that’s too big, a mortgage that’s unaffordable, or an investment that promises more than it can deliver.  Market-driven health care is motivated by the same imperative.  In our highly-caffeinated health care system, the mantra is volume, volume, volume.  That ‘volume’ is you and me, and the people we love.

Here’s a story about a colleague, a research scientist, who has a heart condition that she watches very carefully. She went for a nuclear stress test at a free-standing diagnostic testing center as part of her routine monitoring.  After the test was complete, the cardiologist told her she had a very serious problem that required open-heart surgery.  She was scared out of her wits and immediately thought of a family friend who had died recently during heart surgery.  The cardiologist wanted to do a cardiac catheterization and prescribe medication.  He also told her to stop jogging immediately.

My savvy friend knew she didn’t want to have more tests or treatment at that center.  Here’s why.  While on the treadmill, she overheard the doctor tell the nurse that the center had nine patients a day and needed to increase its census to fourteen a day to generate enough revenue to make it financially viable.  It’s true.  She walked out and never looked back. A second opinion from expert physicians recommended continued monitoring and she followed their advice.

About ten years ago, the Institute of Medicine of the National Academy of Sciences convened a group of experts who acknowledged a uniquely American phenomenon in health care: overuse.  It occurs when the possibility of harm exceeds the possible benefit.  Health care insiders say that overuse is an epidemic.  Epidemics are not good for anyone.

To learn what you can do to avoid unnecessary medical treatment, check out my new book coming out next month, The Treatment Trap, which has twenty smart steps for consumers.  Read the foreword by Jim Guest, president of Consumers Union.  In the meantime, share your story.  Together we can learn from – and empower – each other.

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Combined with other AARA provisions, this is good news for some of our nation’s “safety net” providers, including FQHCs, as well as public and nonprofit hospitals that treat many low income patients.  But there’s also a growing hole in the safety net as free medical clinics struggle to survive the current economic recession.

In a recently released research brief on safety net providers by the Robert Wood Johnson Foundation’s Center for Studying Health System Change^[1], the authors note, “while many FQHCs have benefitted from both the recent ARRA funding and federal expansion grants over the past 10 years, many free clinics without FQHC status were facing more serious financial strains than safety net hospitals and FQHCs.”  The report goes on to quote one FQHC executive as saying, “FQHCs got money, and free clinics are worried about keeping their doors open…There’s a big have and have-nots disparity.”

FQHCs include community health centers, public housing centers and some outpatient programs.  These providers receive federal payments for qualified services and are eligible for stimulus funds and federal expansion grants.  In contrast, free clinics do not receive federal payments and they are not eligible for funding available to FQHCs.  Instead, they depend primarily on private philanthropy and a team of volunteer physicians to provide care to the uninsured.

Having served recently on the board of a free medical clinic, I can attest to their value in local communities.  In addition to serving as a major provider of primary care services for the uninsured, our free clinic had an expansive network of volunteer specialty physicians who provided free services not available through the FQHC located just blocks away from the clinic.  In fact, the FQHC would refer their patients to the free clinic in order that they might receive needed specialty services.

Certainly, I’m not suggesting that free clinics receive federal funding for medical services provided by volunteer physicians.  But the attendant administrative and resource costs of providing primary and specialty care services can be significant and funding from existing sources is languishing.  It is time to recognize the unique role of all safety net providers of care, including free clinics, and develop new measures for federal support.  Each has a valuable role to play in our health care safety net for the uninsured.

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