Kelley Connors

This post was written by Kelley Connors, President, Founder, Real Women on Health!

Patient advocacy has a new meaning for me – for years I was only looking at one piece of the advocacy puzzle. Today, I see the whole picture from the patient as well as organizational standpoint.  One’s view certainly intensifies as your passion rises when your own family member or friend needs help navigating the healthcare system to receive the right care.

For years, I’ve been behind the scenes of educational campaigns that patients benefited from with pharmaceutical industry support; think Go Red for heart disease awareness among women, and Susan G Komen’s grassroots efforts to increase public awareness about the importance of self-breast exams and mammograms.  With women’s lifetime risk of breast cancer being one in eight and heart disease the leading cause of death among women, I’ve been hired as a PR specialist to develop advocacy campaigns for companies to help women gain the knowledge they need to effectively prevent and treat a myriad of women’s health conditions.

But, things change when it’s your dad who has chronic myelogenous leukemia (CML).  And, you start to dig in to find out as much as you can about the condition, how to pay for a drug that costs $8,000 a month, and how to coordinate care when oncologists – as valued as they are – may miss concomitant conditions that impact how a patient feels and responds to CML treatment.

(more…)

By Grace Bender. Everyone needs to be their own healthcare advocate.  I realized this when I noticed my mother struggling to manage the numerous medications she was taking. With so many prescriptions and over-the counter medications to keep track of, I was concerned about her taking the correct dosages at the correct times and following all the various instructions.

So I decided to create a medication chart that allowed her to track her medications more easily and ensure she was taking them correctly. We then showed the chart to each of her physicians and pharmacist.  The result was a dramatic change in my mother’s medication regimen.  The chart enabled her physicians to view what they and all her other doctors were prescribing. They soon realized just how many medications she was on and that some medications were actually counteracting others.  Many prescriptions were changed or stopped and over time she went from taking 16 medications to nine.

Adverse events related to medications are the fourth leading cause of death in U.S. for patients over the age of 65.  This startling statistic led me into the patient-advocate role.  Since that time my own experiences have continued to reinforce my belief that individuals need to take control of their health and work to make sure all their healthcare providers, caregivers, and/or family members are working together as a team.

After being faced with several health scares in 2008, I decided to have an MRI breast scan for peace of mind.  I had learned that the scan was the best diagnostic and screening tool for women with large, dense breasts and a family history of breast cancer.  Since I had a mammogram six months earlier, which was normal, my physician did not think the MRI was necessary.  However, I decided to have one to be certain I was breast-cancer free.  To everyone’s surprise, the scan revealed three spots that biopsies confirmed to be multifocal breast cancer.  Since I knew my own body and had educated myself about available screenings, I may have saved my life because I was told a mammogram might have taken years to pick up the spots. This may not be the right course for every woman, but everyone should know that this tool exists.

I made the decision to undergo a double mastectomy and because it was caught early, I did not need chemotherapy or radiation.  However, I was prescribed Tamoxifen, which is a drug that can help prevent cancer from reoccurring. Like many medications, you must be careful about what other medications you are taking.  I discovered that the anti-depressant I was on counteracted the benefits of Tamoxifen.  Again, I acted as my own advocate.  Remember: Medications can save your life.  However, you must take them correctly and be very careful about what else you are taking, eating, or drinking in combination with your prescription.

Medical errors by physicians and hospitals are still prevalent and a staggering number of patients are misdiagnosed every year.  Compounding the problem is the fact that numerous prescriptions prescribed by various physicians are not being reviewed on a regular basis and patients self-medicate.

Patients should not just depend on a physician’s files of their medical information but take it upon themselves to create their own permanent medical records.  Before going into a medical appointment, everyone should be prepared with the following information:

• List of current medications and dosage
• List of ailments
• Medical history (if seeing a new physician)

A patient should also be prepared to explain to the doctor exactly what their problem is and offer an overall view of their health.  If a serious condition exists, perhaps they should bring someone else to the appointment.  In many cases a friend or loved one can interpret the information the doctor provides more objectively and be ready with questions that someone in an emotional state might have difficulty asking.

Ultimately, it is the responsibility of the individual to be their own advocate, know their own body, ask questions, and make sure everyone that is part of their healthcare “team” is communicating and basing decisions on the current, accurate medical information.

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 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 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.

(more…)

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…)

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

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

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

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

With Disruptive Women in Health Care Real Women on Health! Reveals Power of Patient Advocacy

Real Women on Health!, the multi-channel platform and online community for women, reveals the power of patient advocacy with a leading healthcare blog community, Disruptive Women in Health Care. The two online media forces have invited key influencers from the Health 2.0 movement for a three-part call-in, live on-line radio series starting in August.

The Real Women on Health! online radio show will allow experts to share their ideas on how to use technology to promote collaboration between patients, their caregivers and medical professionals. The shows will feature Indu Subaiya, co-founder of Health 2.0, Jane Sarasohn-Kahn, health economist, principal of THINK-Health, Trisha Torrey, Guide to Patent Empowerment, Regina Holliday, medical advocate and muralist and several others. “We’re excited to bring together these women innovators to share their visions of Health 2.0 and what it means for healthcare’s stakeholders – which should be every one of us,” says Robin Strongin, founder of Disruptive Women in Health Care and President and CEO, Amplify Public Affairs.

Innovative companies and entrepreneurs in Health 2.0 are developing the most effective tools and approaches to healthcare in this new century, and are looking for new ideas from all sources. “We know how important collaboration and communications are to transforming healthcare today”, says Kelley Connors, founder of Real Women on Health! and President of KC Healthcare Communications LLC. “Listeners who call in will have the chance ask questions, and share their ideas as well – it’s all about sparking a dialogue on patient advocacy,” she added.

Topics and guests include:

Tuesday, August 3rd 12:00pm – 1:00pm EST: Topic: How ‘Health 2.0’ is Evolving and Why You Should Care.” Featured guests, Indu Subaiya, co-founder of Health 2.0, a leading showcase where healthcare transformers share news and ideas around technology and patient communities, and Jane Sarasohn-Kahn, health economist, principal of THINK-Health and founder of one of the most influential blogs in healthcare, Health Populi.

Thursday, August 5th 12:00pm – 1:00pm EST: Topic: “Patient Empowerment: How to be Your Own Best Advocate.” Featured guests, Trisha Torrey, Guide to Patent Empowerment, About.com and quoted in this month’s “O” Magazine, and Regina Holliday, medical advocate and muralist, painter of “73 cents,” a depiction of challenges she faced to acquire her late husband’s medical records as he struggled with cancer (“73 Cents” also cover of British Medical Journal 9/09).

Later in the month, the show will also explore how healthcare professionals are using social media to enhance communications with patients.

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

For more information on this series or how to sponsor shows, please contact Cassie Holm, cassie@realwomenonhealth.com or call 201-417-1309.

By Robin Strongin. When the Obama Administration announced the new regulations expanding preventive care, ensuring that essential screenings and tests would be covered without co-pays for deductibles, my first thought was that this may be one of the most important provisions of health reform in terms of improving the overall health and well-being of the American people.

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.

By Santi Bhagat, MD.  It seems that children with chronic medical conditions and disabilities (CMCD) just disappear into thin air when they grow up.  No-one tracks these young people, so we have no idea what happens to them.  We don’t know if they have insurance and doctors; are sick and in emergency rooms; go to school and have jobs; and/or live independently and have social lives. It is estimated that 600,000 young people with CMCD enter adulthood every year, into a system devoid of any supports and services, a system that is completely unprepared for them.  

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. (more…)

By Robin Strongin. I spent part of this past weekend at the Ovarian Cancer National Alliance (disclosure-a client of mine) Annual Conference and came back both humbled and inspired.  It is a remarkable experience to talk with people whose lives have been profoundly changed by cancer.  Their grace and strength, their determination to DO something — about research, about curing this disease, about changing laws, about helping others – was inspiring.  The women I met were young and not so young, they had hair, and bald, tatooed heads, they came from all over the country and they were all, in their own way, supporting each other and themselves. Many of them had become advocates.

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.

By Regina Holliday. On Monday, June 7th, I had the pleasure of attending the “Health 2.0 Goes to Washington” conference. It was the meeting of great minds. Attendees came from all over the United States and included representatives from government, medicine and information technology. In this heady mix of professions, patient advocates were liberally sprinkled. I was so excited to see that every panel had a patient representative. This was such a change. At this point I have attended quite a few medical conferences. I have never seen such an amazing selection of patient speakers.

Standing room only Health 2.0

I also noticed this conference differed in other ways. I was intrigued by the all the people standing along the sidelines watching the speeches. There were plenty of seats available. These were nice upholstered theatre-style seats. Yet, people were standing or lounging on stair steps. I looked around. Were they attempting to play hooky? Were they standing up in order to more easily join in a hallway conversation? I looked out in the hallway. Nope, no one was goofing off or socializing. I sat down myself, only to stand 15 minutes later. I joined the standing ones. I was so filled with energy and excitement that I could not sit. I could not be contained like that. I looked among those standing. I noticed a lot of techies and early adapters. I saw a group of people who might have been termed ADHD. I saw people who would not sit still. Thank God for these people who refuse to sit still. They refuse to wait for incremental change in our medical system. Thank God for sites such as Jamie Heywood’s “Patients Like Me” or Trisha Torrey and her blog “Every Patient’s Advocate.” Thank God for David Hale at NIH working on the Pillbox program that will enable the rapid classification pills by appearance alone. These amazing people were willing to stand up and create positive change within the system. To outsiders the standing ones may have seemed foolish. After all, there were plenty of chairs. Foolish or genius: It is just a matter of perspective. Sometimes you just can’t sit still and wait for change.

Looking back, I have always had a hard time sitting still. (more…)