Archive for the ‘Patients’ Category

“I know I blow up and get angry. I am protective about my patients and the physicians in my department and I can’t help myself.”

Dr. Leonard was one of my coaching clients, a surgeon who had left a trail of destruction by his combative style everywhere – the operating room, staff meetings and medical executive meetings.

“I’m a leader in my surgical specialty. People expect me to be forceful.”

I asked, “What do you look for in a good leader?”

“I want someone who listens to me, who looks at all options without stuffing his solution down my throat. I want someone who is calm, thoughtful and . . .”

After a long pause I heard “Oh.” (more…)

The demand for patient voices is on the rise as hospitals and dialysis centers, research teams and health care advisory groups face requirements to document our participation in governance and program decisions. And many of us have stepped forward to take on these roles.

Some of us do so as victims of horrific medical errors or uncoordinated care resulting in injury or from disrespectful care that undermines all confidence in health professionals and institutions. We want to make sure what happened to us or our child never happens to anyone else.

Some of us are heroes, defiantly wearing Jimmy Choo stilettos to chemotherapy or battling our over-extended doctors to ferret out a cure for our or our mom’s disease. We want to demonstrate that with a ton of chutzpah, considerable energy and a little luck, we patients can overcome some of the limitations of health care and live to tell the tale. (more…)

I love earPlanes.

Do you know what I am talking about?  earPlanes are these little earplugs that were created by Cirrus Healthcare products to reduce ear pain when flying.  The device consists of a silicone earplug and a ceramic pressure regulator.  As a frequent flyer, I use them on every flight. They cost $8.00 a pair and are worth every penny.

Before I found out about these nifty little things, I was suffering frequent ear infections post flight and could not hear very well due to ears that would not “pop” for days.  This was quite a problem.  It is hard to speak well if you cannot hear well.  Also as a person with high co-pays and no prescription coverage treating the subsequent ear infections was getting to be quite expensive.

I posted my problem on Facebook and one of my friends alerted me to the wonder that is earPlanes.  I admit I was somewhat disappointed that my doctor never suggested such an affordable preventive option.  (By that point I already spent over 500 dollars on my air flight-induced ear infections.)  Perhaps she did not know about this option, so I am blogging about it in the hope that fellow travelers can have a less painful journey.

If you read the above paragraphs you might realize why I am writing about earPlanes is not to help Cirrus Healthcare Products.  (more…)

You knew it was coming. Reality TV has come to health care.

WDEY network began filming a new reality show last month; it’s called Medicine Unlocked (1). It follows real patients navigating the health care system in search of treatment for their ailments. Each two-hour episode focuses on four patients who share a specific preliminary diagnosis; one week it’s back pain, another it may be gall bladder problems or men with suggested prostate cancer. Each patient-contestant receives a pre-loaded health savings account and debit card and earns “keys” that allow passage through a series of decision “gates.” Gate 1 is Who (will be their doctor); Gate 2 is What (confirming their diagnosis); Gate 3 is How (the problem will be treated); and Gate 4 is Where (the treatment will occur). By successfully getting through the gates to a successful treatment, patients become eligible for a $1 million grand prize. (more…)

I met Dr. Marty Makary over lunch at Founding Farmers restaurant in DC about three years ago. We had an animated conversation about hospital safety, the potential contribution of checklists to reducing medical errors, and his upcoming book about the need for more transparency in the health care system. Marty was well dressed and soft spoken – sincere, and human. We exchanged business cards and wished each other luck in changing the health care system for the better. We were two doctors tilting at windmills. (more…)

Disruptive Woman Regina Holliday is often lauded by the patient advocacy community as the Rosa Parks of patient care. With her own patient and caregiver experiences tucked in her heart pocket, she travels globally to present her message of patient empowerment and inclusion in health care decision making, health records, and care plan discovery. Fearlessly she stands before officials, practitioners, and others to demand a thoughtful dialog on the role of patients in their own health care. In her own words, “Being a thought leader in social media takes a lot of work, but you can do amazing things.” (more…)

Rosemary and Larry Mild

Picture the Garden of Eden. Eve has Crohn’s Disease. Hey, there’s an upside to it. She rejects the serpent’s apple because she doesn’t have a knife to peel the skin off.

Back to reality. In a restaurant with my husband, Larry, the waiter hovers over me, poised with his pad, and I’m taking forever. I stare at the menu. Each entrée has five embellishments. Or is it fifty? Most of them I’m not allowed. You see, I have Crohn’s Disease, and with it comes a list from here to the moon of foods I can’t eat. (more…)

By Carrie Winans. If you went to the doctor and found out you were at risk for osteoporosis, you would probably start taking steps to prevent it under your doctor’s supervision.  So why is it that when doctors diagnose patients as pre-diabetic – patients with blood glucose levels that are higher than normal but not high enough to be classified as diabetes – it so often goes untreated while there is still time to take action?

On June 14^th, the Diabetes Prevention Summit in Washington, DC highlighted this problem and many others.  One of the most interesting things the conference emphasized was the breaking down of stereotypes about type 2, or adult-onset, diabetes. This disease presents itself by insulin resistance or inability to respond properly to insulin.  Resistance develops due to genetics, obesity, increasing age, race, family history, and high blood sugar. Mass media often tries to paint those with diabetes 2 under a broad paint stroke, highlighting their weight and as the sole reason behind the condition.  However, it is important to note that not all overweight people have diabetes 2 nor are all people with diabetes 2 overweight.

(more…)

Partnership with Patients was created in response to Regina Holliday’s experience in attempting to participate in the Partnership for Patients kick-off meeting, a CMS-funded initiative. Regina experience can be read in her post Pecking Order.

We ask you to bring your friends.  It does not matter if you have been working in this field for years or if you just began to today. We welcome you. We will not exclude because of worries that we may not have enough supplies to share or funding for travel.

By Elliot Patton. Close to 26 million Americans suffer from asthma, including 1 out of every 10 children, and asthma costs our economy about $56 billion per year.  The condition affects racial and ethnic minorities at a dramatically disproportionate rate; African American and Puerto Rican children under the age of 17 are twice as likely as their Caucasian counterparts to be affected by this respiratory condition.  Asthma rates are also correlated with income, with lower income individuals having a significantly higher chance of affliction.  In addition to increased prevalence of asthma in minority populations, minority individuals with asthma are much more likely to have a serious asthma-related health event; black asthmatic children are twice as likely as white children to be hospitalized and four times more likely to die as a result of their condition.

In an event that marked the beginning of a push to end the suffering of these underserved populations, government leaders met yesterday at the Boys and Girls Club of Greater Washington for the official release of the Coordinated Federal Action Plan to Reduce Racial and Ethnic Asthma Disparities.  White House Council on Environmental Quality (CEQ) Chair Nancy Sutley, Environmental Protection Agency (EPA) Administrator Lisa P. Jackson, Secretary of the U.S. Department of Housing and Urban Development (HUD) Shaun Donovan, and Secretary of the U.S. Department of Health and Human Services (HHS) Kathleen Sebelius discussed the significance of the action plan, and a 10 member panel delved deeper into the details of the coordinated effort to reduce racial and ethnic asthma disparities.

(more…)

By Andre Blackman

I was recently on a call with the AIDS.gov team and a group of other noted leaders in the health field. The call event was aimed at developing smarter ways to reach and engage communities of color around HIV/AIDS prevention and education. Each of us had great case studies, resources and personal stories to share about how to make a positive impact in the ongoing battle of the disease in these communities.

One thing we all need to keep in mind: this fight is still very real, still claiming lives and there are still many areas that need change. Sometimes, no amount of technology or marketing can help until the people change. Stigma, oppression and often times misinformation still causes a large amount of the disease’s reach. That needs to change in order for the larger impact to begin.
(more…)

Disruptive Women is honored to announce our newest blogger, Annie Levy.  Annie is working with us on our Health In Place (HIP) initiative.

Annie Levy creates images and projects that tell stories.  Stories of individuals both old and young. Stories of people who are hospital patients, residents of nursing homes, those in other medical contexts and young people dealing with life threatening illnesses.  They are people who, Ms. Levy makes clear, should not be categorized by their health status or where they are receiving treatment.  Their conditions “are not all of who they are,” she said.

Ms. Levy is a New York City-based creative director and photographer who, “creates and exhibits projects, telling stories to transform the way we see things.”  Her resume is both impressive and colorful.  Exhibits of her work have been shown in venues as diverse as the United Nations and the Alzheimer’s Association.  She has spoken to prestigious audiences such as a New York Times Foundation program for journalists at the International Longevity Center.  She has shared her perspectives during a Grand Rounds presentation at the Mount Sinai School of Medicine.

She began exploring the idea of telling personal stories through images during her student days at the New York University film school, but it’s through her work in various engagements that her unique abilities to transform individuals from medical files to three-dimensional, flesh-and-blood individuals has been honed to an extraordinary fine art.  Some examples:

• Her month-long lobby exhibit, “Ageless” at the United Nations paired her images of older individuals with their art work. “I called the project ‘Ageless’ as I felt that older people were being categorized and labeled and the concept behind the show was to display creativity and its transcendence of a particular age.  I wanted to remind people that you can’t categorize people because of their age.”
• Her portraits of geriatric rehabilitation patients at New York City’s Roosevelt Hospital.  “I noticed that, on the hospital walls, there were the standard bright, colorful art posters that you see in most hospitals, but nothing that genuinely related to what was going on there.  I wanted to depict the individuals of Roosevelt Hospital in ways that spoke of their determination, courage, and love of life in a setting where that was both being displayed and very much mattered.” (more…)

When patients become more actively involved in their own health, there’s a much stronger likelihood their health outcomes will be better.

That’s why “Questions are the Answer,” a new public education initiative from the U.S. Agency for Healthcare Research and Quality (AHRQ), encourages patients to have more effective two-way communication with their doctors and other clinicians.

“Questions are the Answer” features a website — where you will find these free educational tools to use with your patients:

• A 7-minute video featuring real-life patients and clinicians who give firsthand accounts on the importance of asking questions and sharing information – this tool is ideal for a patient waiting room area and can be set to run on a continuous loop.
• A brochure, titled “Be More Involved in Your Health Care: Tips for Patients,” that offers helpful suggestions to follow before, during and after a medical visit.
• Notepads to help patients prioritize the top three questions they wish to ask during their medical appointment.

Clinicians can request a free supply of these materials by calling AHRQ at 1-800-358-9295 or sending an email to AHRQpubs@ahrq.hhs.gov.