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 Glenna Crooks. I still remember the first patient advocate I ever met – Henrietta Aladjem. She outlived predictions of imminent death from Lupus and despite her condition helped others, providing information, inspiration, advocacy and hope everywhere she went. Gracefully. Persistently.

Since then I’ve met more than 10,000 advocates – some of them children – in 26 countries. In their work they help millions of patients and families address hundreds of diseases and the consequences patients face to get insurance, education, housing, employment and civil rights. In many cases, they or a loved one were in dire need of help they did not receive, so they vowed to help others. It was  a way to reclaim  power, to work through grief or to constructively use anger.

It’s impossible to be with advocates and not respect their dedication, courage and energy. That is especially the case for those working ‘closer to the ground’ where the real suffering of effected people is most palpable. I especially admire them when they venture into unfamiliar policy arenas to tell the stories they hope will create better solutions, particularly from governments. As Chair of the National Commission on Rare Diseases, their stories touched my heart and I still remember their faces.

Regardless of how well they succeed on behalf of any one patient , with one policy maker or in one disease situation however, there will always be more to do. I’ve seen advocates respond to this; having met their initial objective they band with others to help in new ways.

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By Phyllis Greenberger. The non-profit advocacy organization, the Society for Women’s Health Research (SWHR), based in Washington DC is widely recognized as the thought leader in research on sex differences, and is dedicated to improving women’s health through advocacy, education, and research.  Because of SWHR’s efforts, women are included in medical research, and scientists are looking at the different ways health and disease affect men and women and the reasons why. SWHR attributes its advocacy and communications successes to using evidence-based policy in multi-pronged education efforts, as well as to its involvement of a mix of healthcare providers and policy makers dedicated to improving women’s health. SWHR’s advocacy and communications efforts extend beyond lobbying legislators and regulators; it includes education of federal legislators and their staff; scientists who are employed by the federal government, academia, industry, as well as the public.

Advocacy and Communication with the Public

In addition to providing the latest research on conditions that affect women differently from men, SWHR’s education and communications efforts also emphasize that women need to become advocates for themselves and their families. SWHR is founded on the belief that health can be improved through research efforts and this new knowledge must be communicated and translated into individual care, which requires an up-to-date, current exchange of information between health care providers and their patients. 

SWHR’s first major public educational effort was the “Woman Can Do” campaign, to educate and recruit more women about becoming involved in medical research. After the regulatory changes mandating women’s participation in research, SWHR was made aware of the facts that researchers had difficulty finding women to participate in research studies. In 2003 nearly 90 other organizations joined SWHR’s Alliance for Women in Clinical Research to educate women about medical research and ways they can participate. The campaign continues today and additional information can be found on the Women Can Do website .

To further help promote the importance of providing the public with valuable and accurate health research information. SWHR annually presents the “Excellence in Women’s Health Research Journalism Awards” to honor journalists who excel in this arena.

SWHR works to provide women, who make about three-fourths of the health care decisions in the United States, with advice that communication with healthcare providers is a two-way street and with the information that allows them to participate in decisions impacting themselves and their family members.  SWHR’s educational programs and written materials, as well as our web site, also serve as resources for practitioners involved in women’s health issues.

SWHR is committed to ensuring that women’s health remains a high priority on the national agenda, that sex differences become more widely recognized as vital to healthcare treatment options and to advocating for  increased funding for related research.  SWHR will continue to partner with the widest possible range of healthcare providers and policy makers to gather evidence-based knowledge and then communicate it to Congress, the scientific research community, as well as to healthcare providers and the public.

Disruptive Women Archelle Georgiou was interviewed for the blog below, originally posted on August 21st on Big Think.  In order to be a patient advocate you need to be well informed of the issues, this post reminds us of that:

You may want to think twice before your next visit to the doctor’s office. According to Dr. Barbara Starfield’s now-famous study, iatrogenic deaths (those resulting from treatment by physicians or surgeons) are the third leading cause of mortality in the United States, resulting in the loss of 225,000 lives per year. Of that total, nosocomial (hospital-acquired) infections kill 80,000, physician errors claim 27,000, and unnecessary surgery results in 12,000 deaths.  

But iatrogenic errors aren’t the only reason people should avoid hospitals, says physician and health care administrator Archelle Georgiou. She tells Big Think that relying on doctors may actually shorten your lifespan. Georgiou bases this idea on her studies of the earth’s so-called “blue zones,” isolated communities around the world whose inhabitants live longer and healthier lives than the greater populace.

In the Greek blue zone, the island of Ikaria, inhabitants are more than 4 times more likely to live to age 90 than Americans are—yet there is virtually no health care infrastructure. Georgiou tells us: “There are no hospitals or major surgery capabilities…. People needing emergency care are transported by helicopter to Samos (a neighboring island), and all elective surgery is done in Athens.”

A procedure like an arthroscopy or a hysterectomy that would take 3-5 days in the U.S. consumes 3-5 weeks for Ikarians, who must relocate to Athens for the procedure and convalescence. Therefore, “their threshold for elective surgery is significantly higher than ours,” Georgiou says. The result is that people depend on themselves rather than doctors for non-life threatening ailments. And, knowing that health care is so inconvenient, Ikarians take greater care not to get sick—they eat a healthy diet rich in vegetables and exercise daily.

Our greater access to health care (discounting, of course, the millions of uninsured Americans) might make us more likely to live unhealthfully. “U.S. culture is steeped with a ‘find it and fix it’ mentality,” Georgiou tells us. Rather than try to prevent illnesses, we rely on our doctor’s ability to fix what ails us. And the result is that “we spend significantly more on health care than any other nation but without the benefit of improved outcomes or longevity.” In the U.S., our life expectancy is only 78, yet we spend 2.5 times more money per capita than Japan, the country with the highest life expectancy (82.6 years). One-half to one-third of the $2.2 trillion per year America spends on health care is simply unnecessary, says former AMA chairman Raymond Scalettar. (more…)

By Rosemary Gibson. When we listen to experts, our brains turn off.  This is the finding from a study conducted by Greg Berns, a neuroscientist at Emory University.  Here’s what he did.  He asked 24 college students to solve a personal financial problem.  He watched their brain activity using a functional MRI and observed a lot of thinking going on.     

Next, the students listened to a financial expert who told them what they should do.  A second brain scan showed that the students’ brain activity had virtually ceased.  The lesson?  When we listen to experts, our brains shut down.      

When I heard about this study, I couldn’t resist applying the findings to how people make decisions about their health care.  Advertisements on television urge viewers, “Ask your doctor.”  In other words, don’t think for yourself.  Suspend your own thought process and do what someone advises you to do, even if it means you will be exposed to significant risks that are often glossed over.  

For optimal health, we can’t delegate the management of our health, or our health care, to someone else.  We need to own it.  This requires a shift from the notion of consent to informed choice. 

Here are 10 questions to help re-engage our brains in health care decisions.  Call it a Checklist Manifesto for Informed Choice:

1.           What is the procedure or test?
2.           What is the purpose of it? 
3.           What happens if I don’t have it or do “watchful waiting?”
4.           What are treatment options for the condition I have??  
5.           What are the risks and benefits of these options?
6.           What do the risks and benefits mean for me and my life?
7.           Do the risks exceed the benefits? 
8.           If surgery is being considered, how many of the surgeries has the doctor performed?
9.           Who will perform the surgery?  Will residents, or doctors-in-training, be involved?
10.           How many of these procedures have been done at the hospital where it will be performed?

There’s an added bonus to being fully informed.  Research shows that when people have their brains turned on and are engaged in making decisions about their health and health care, they use less intensive and costly approaches to treating their condition.  That can only be good for one’s health – and pocketbook.

By Trisha Torrey. Once upon a time when we experienced strange symptoms, we went to the doctor, the doctor listened and asked questions, we got the medical tests we needed, were correctly diagnosed and successfully treated, and we could afford all that great care.

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.

By Lisa Martinez.  When I was in college, I would ask my math professors how I could apply what I had learned in my math courses to the real world of problems that I would encounter. I didn’t get much of an answer. However, if they had said math may save your life and help you make good health decisions, I would have said show me what you mean. Well here is how understanding a couple of math principles can make a huge difference in our healthcare decision-making.

Most likely you will know someone who has been diagnosed with cancer: family, friend or yourself. It can be a daunting task to understand recommended treatments and what those treatments may mean in terms of preventing a recurrence of cancer or a cure. For example, the media reports a 50% increase in survivorship. Pretty impressive and sounds like the latest miracle drug. However, when evaluating a treatment you should ask if the percentages you are being provided are the relative risk reduction or the absolute risk reduction percentages so that a fully informed decision can be made. In one study, 56.8% of patients chose the medication whose benefit was presented in relative terms and 14.7% chose the medication whose benefit was in absolute terms.*   The patients in this study thought that the true benefit was much greater than it actually was when relying on the relative risk.

Here is an example of relative versus absolute risk reduction:

100 women took ABC pill and 100 women took a placebo, which is not an actual medication. Of the 100 women who took ABC pill, 2 developed cancer and of the 100 women in the placebo group, 4 got cancer. It is reported that this clinical trial showed a 50% reduction in cancer and another report states that the same clinical trial showed a 2% decrease in cancer. Both percentages are accurate and that is because the data are being reported in two different ways.

The 50% reduction was reported using relative risk reduction. The 2% decrease was reported using absolute risk reduction. It is extremely important that you understand the difference between the two when making decisions about your care.

In the relative risk reduction report, 2 women who took the ABC pill out of 100 developed cancer and 4 women out of 100 who took the placebo got cancer. Two cancers in the ABC group are half as many as the four in the placebo group.

Thus the 50% increase in survivorship or calculate 2%/4% = 50%.

To calculate the absolute risk percentage, do the following calculation:

4% (placebo) – 2% (ABC pill) = 2% absolute difference.

Here are some other examples that should make the difference between absolute versus relative risk reduction even more clear.   

So when presented with options for chemotherapy or any treatment, make sure you ask your healthcare provider to give you the relative and the absolute risk reduction percentages. For the absolute risk reduction number, just ask your healthcare provider, “What is the actual number of patients out of 100 who benefited from the treatment?”

If your provider cannot answer that question, then ask that she or he find out for you. To be a savvy health advocate you must become statistically literate, and understanding the difference between relative risk versus absolute risk reduction moves you towards the head of the class.

To learn more about health statistics consider reading Know Your Chances: Understanding Health Statistics  by Steven Woloshin M.D.M.S.,Lisa M. Schwartz M.D.M.S., and H. Gilbert Welch M.D. M.P.H.

*Malenka DJ, Baron JA, Johansen S, Wahrenberger JW, Ross JM. The Framing Effect of Relative and Absolute Risk. J Gen Intern Med. 1993 Oct;8(10):543-8.

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.

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By Jane Sarasohn-Kahn. Electronic health records (EHRs) broaden access to patient data and provide the platform for pushing evidence-based decision support to clinicians at the point-of-care. This promotes optimal care for patients, reduces medical errors, optimizes the use of labor, reduces duplication of tests, and by the way, improves patient outcomes. When done in aggregate across all health providers, a team from McKinsey estimates that $40 billion of costs could be saved in the U.S. health system.

Reforming hospitals with IT investment in the McKinsey Quarterly talks about the American Reinvestment and Recovery Act’s (ARRA) $20+ billion worth of stimulus funding under the HITECH Act and estimates that 80% of existing hospital IT applications will be affected by the regulation. Hospitals will be spending about $120 billion to meet the adoption and meaningful use provisions of the Act. This equates to $80,000 to $100,000 per hospital bed. ARRA incentive payments will cover roughly 20% of this cash outlay, meaning that $60-80K won’t to covered.

But McKinsey says, “Hold on!” There are ways to recoup the spending gap between HITECH incentives and cash-out-of-the-hospitals-budget. McKinsey’s research calculates that optimizing labor, reducing adverse drug events and duplicate tests, and adopting revenue cycle management can help the average hospital save $25,000 to $44,000 per bed each year. That gets to the $40 billion in annual savings when multiplied across all hospital beds in the U.S.

In operational terms, the savings accrue through:

• Managing inpatient beds more efficiently using equipment-scheduling software
• Optimizing the use of clinical equipment
• Determining optimal staffing
• Reducing administrative waste
• Reducing adverse drug reactions through computerized-physician-order-entry (CPOE) which cost $8,000 to $15,000 per bed each year (up to $3 million for a 200 bed hospital)
• Managing the revenue cycle by billing unbilled services, equivalent to 0.4% of hospital services, or $4,000 per bed.

Jane’s Hot Points: The McKinsey team rightly points to three critical success factors for maximzing health IT investments that the most wired, effective hospital-adopters have learned: get critical buy-in among clinicians and hospital execs early in the HIT adoption process; ‘radically’ simplify health IT architecture; and, elegantly plan and execute.

It’s the implementation phase in health IT adoption that so often gets short-shrift. McKinsey notes that Canada’s hospital system devoted 30% of its entire budget to change management. That’s a big number, but it’s also where rubber meets road: a capital outlay of $N million is the easy part of HIT adoption. The follow-on implementation resources, both in terms of sheer dollar volume and labor/staffing, along with disruption of clinical workflow, is the hard part. But getting to meaningful use will require no small amount of implementation effort in the form of evangelism, education and training, and ongoing assistance and support.

Originally posted on The Health Care Blog on August 18th.

Last Friday the Food and Drug Adminstration approved ella, a new drug that is supposed to block pregnancy up to five days after sex. This is two days longer than the currently available emergency contraceptive Plan B. Some anti-abortion groups are arguing that this is not a means to prevent pregnancy, but rather end it.

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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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By Robin Strongin. E-Patient Dave:  One Patient Advocate’s Survival Story and What We Can Learn From Him—How to be an Empowered, Engaged, Equipped and Enabled Patient

Photo by Roger Ramirez, Chariot Photo. License: Creative Commons Attribution ShareAlike 3.0

Richard Davies deBronkart Jr , known by many as e-Patient Dave, is a cancer patient and blogger who, in 2009, became a noted activist for health care transformation through participatory medicine and personal health data rights.  In 2010, he became a published author and Disruptive Women in Health Care’s August Man of the Month.

I was a middle-aged guy going through life, as involved with my own health care as I was with my car’s carburetor, which is to say, virtually not at all.  And then I found out I was almost dead.

That’s how my interview with Dave started. 

Dave was diagnosed in January 2007 with Stage IV, Grade 4 renal cell carcinoma (kidney cancer) at a very late stage. His median survival time at diagnosis was just 24 weeks; with tumors in his lungs, bones, and muscle tissue, his prognosis was dire.  Now, almost four years later, e-Patient Dave has emerged as a patient advocate, with a self-described calling to connect, engage, and empower patients.

Dave had been proactive for years when it came to choosing providers he liked, so when it came to crunch time, he  was fortunate on several levels: he received excellent treatment at Boston’s Beth Israel Deaconess Medical Center; his physician, Dr. Danny Sands, who in addition to serving as Dave’s primary care doc since 2003, also serves as the Senior Medical Informatics Director at Cisco and as such is on the bleeding edge of online communications and health information technology; and, the Biologic Therapy program helped Dave participate in a clinical trial for the powerful High Dosage Interleukin-2 (HDIL-2). His last treatment was July 23, 2007, and by September it was clear he’d beaten the disease. His remaining lesions have continued to shrink.

Technology and Patient Advocacy:  An Author is Born

Dave observed that many patient advocates come to patient advocacy because they were injured, or had a negative experience with the health care system.  This was not the case for Dave.  He had a life altering experience; a near fatal disease that rather than kill him, turned his life in a different direction.

Before his diagnosis, Dave was a savvy online guy. “I’ve been online since 1989, heck I even met my wife online.  So it’s no surprise that I ended up with a cutting edge academic medical center and physician.”

While the health professionals, life saving medicines and medical technologies were key to his survival, so too was the Internet—it became another of Dave’s lifelines:

• Dave was able to communicate with his primary care physician by email and his hospital was committed to making information available electronically;
• Dave used the web to access information about his disease;
• He joined the Association of Cancer Online Resources, an expert patient community; and
• A participant in online communities before his illness, Dave quickly figured out that using online technology to update his friends and family not only provided an efficient means to communicate what was happening and how he was doing, but it connected him to a great number of people who cared about him, supported him, were there for him.  He started an online journal and support community on CaringBridge.

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By Robin Strongin. Over the next several weeks Disruptive Women will be blogging about the various aspects of patient advocacy.  Then in September, we will disseminate an e-Book on the topic.  To get ready for this series, I invite your input; think about what patient advocacy means to you and share your stories with us. Please comment on this post to let us know what you think about the topic– its level of importance in health care and any questions you may have or experiences you are comfortable sharing.I hope you will join us in this very important dialogue.