How to Thrive after 35: My free! Teleseminar

As I get farther from 35, I find myself writing my own owner's manual. I'd like to share the lessons I've learned about getting your best health care, from my research and interviews with public figures, and less renowned family members and other people.

So.....

FREE! - Ken Farbstein's "How to Thrive After 35" Teleseminar on Getting your best health care: Real-world stories for patient empowerment.

In this interactive audio session hosted by Roslyn Franken, Ken will use stories from his new book to answer your questions and describe:

1. Specific tips for staying safe during medical crises;
2. A general mindset of being an empowered patient; and
3. Ways to partner with your doctors and nurses.

When: Thursday evening, June 30, 8:00 pm EST

Ken leads Patient AdvoCare, advising patient advocates and individual patients during health crises.

Please write your question and register at Roslyn Franken's web site.

I see seven!: Use of social media by seniors with multiple chronic conditions

A story from Debbie Scammon, PhD:

We are trying to reach our most fragile patients, the ones with multiple chronic conditions, who have extra needs for supportive care. I led a focus group a couple of weeks ago with ten patients, all over 60, all with at least one chronic condition. We thought people like that might be especially hard to reach with a patient portal. But every one of them HAD been on our portal, which we've had only since the Fall 2010. Nearly all of them had been looking up their test results there, after an appointment, to check the posted test results, because, they even said, they wanted to put them on Facebook! Why? I think so they could show off to their friends, even small successes, like: "I got my blood pressure under control!" or "I walked an extra mile," or "I lost five pounds!" They'd look forward to getting congratulated by their peers, getting accolades; they want that pat on the back. It might be more meaningful to them when it comes from someone who understands the situation they're in, even more than from a doctor.

Later on in that same focus group, one patient who'd been a patient advocate in a community organization raised the possibility that patients with similar conditions could start a peer support group. It was notable to me that they weren't dependent on healthcare providers for that; they wanted to be there to support each other. The information shared was that vital to them. For example, one member of the focus group had said, "I wish my care team didn't ask me what meds I was on every visit." Another member of the group responded, "That's because you only see one doctor; I see seven!" So the light bulb came on for the one who was objecting to the medication reconciliation; she said, "Now I get it!" They're able to explain to each other in understandable terms why things are happening with their conditions and their care. That's really powerful. That's the whole basis of social networking.

There's a great positive opportunity for using social media, especially electronic media, more generally to engage patients and facilitate their communication with each other.

Debbie Scammon's advice to seniors with several chronic conditions: Learn to take advantage of the "power of many" available from your peers both on- and off-line.

Thanks to Debbie for our interview in June 2011. See the executive summary of one of her recent articles.

Like I need another guy: Bed Buddy for arthritis pain

Melinda Winners' story:

I have five forms of arthritis. I know all about pain. In my early twenties, about 20 years ago, I was diagnosed with rheumatoid arthritis (R.A.), the first form of arthritis. I was paralyzed with pain, just like a paraplegic; I couldn't walk, or roll over in bed, or pull my own pants down. My hands wouldn't work properly. You could feel the heat radiating from the joint, 12 inches away! It took many injections of morphine just to get me onto a backboard into the hospital, and many more to get me off it. They had to keep me drugged all the time. It was such pain! –nothing would relieve it!

A friend of mine, a naturalist, believed in not using any meds. One day – it was my birthday – my hip was popping. That's my sign that an episode of being paralyzed with pain is coming. We were adopting a baby, and we were on the way to see the mother before the baby was born. The hallway in the hospital was long, and my hip kept popping and popping. I said to my friend, "This is killing me! I'm going to be paralyzed with my new baby."

My friend told me she found a Bed Buddy. We used to joke about it: "Like a need a new guy!" (Carex makes them; you can put them in the freezer, or into the microwave to heat them. Dry heat makes my pain worse; moist heat makes it feel better.) So I'm arguing with her about it all the way down the hallway.

When we got home that day, it was my birthday present: the original Bed Buddy. I insisted that it wouldn't work. My hip was popping a lot, and my pain was eight or nine on a scale of one to ten, almost at being paralyzed with pain; it was horrendous. I'd once given birth to a ten-pound baby, and I'd rather have that pain – that's how painful it was.

My friend had two of them, which she took everywhere. First she put one in the microwave to heat it up, and then she alternated hot and cold ones for two hours. That night I felt better. That seemed fake somehow, because it was warm.

The next morning, I didn't get paralyzed with pain. My knees were better too, because when they started to swell, I'd used a Bed Buddy that had been in the freezer.

Rheumatoid arthritis is an immune system problem. The pain travels from one side of your body to the other, left to right. But these would really take the pain away. Now they have several products, for your neck, hands, feet, and so forth; there's one for everything. So my neck doesn't get stiff.

Melinda has written a book, available at her website: Cooking with Arthritis. Thanks to Melinda for sharing her story, and to Sarah Long for arranging the interview.

My Dad, my dog, and me: Testimony on legislation for patient engagement in decision-making

Chairman Sanchez, You asked that we speak from the heart. My three-minute testimony [June 14 at the Massachusetts Statehouse] is about my Dad, my dog, and me.

I'm Ken Farbstein, past President of Health Care for All’s Consumer Health Quality Council, and the author of Getting Your Best Health Care: Real-World Stories for Patient Empowerment. Thank you for this opportunity to support "An Act Promoting Patient Engagement in Health Care Decisions," H.1495/S.1078.

A surgeon once told me I should have Lasik eye surgery. When I probed to learn more, she said I'd probably still need to wear glasses afterward. I said No. Another time, an ENT surgeon said I should have sinus surgery. I looked into it carefully, and then I said No. Instead, both times, I shared in the decision-making by reading, and asking questions about the effectiveness and the alternatives and side-effects. Then I chose non-surgical alternatives that were less costly. If patients can share in the decision-making, we'll make better informed choices, and sometimes we'll decide against surgery – which could save money for the whole system.

This week I brought our dog to the vet, asking about a lump on his front left elbow. The surgical consult, and the two later phone discussions, were much more clear, specific, factual, and useful than those two surgical consults I'd had about my own surgical decisions. Our veterinarian provided written materials about the preparation for surgery, follow-up, and costs, none of which the human surgeons had provided.

In a very different realm, near the end of a person's life, a lot of people would choose hospice care, like we chose for my father, who was then in the final stages of Parkinson's Disease. He had seen his own mother's long and heart-breaking struggle with Alzheimers' Disease, and so he had written a living will, when he was age 63, still full of vim and vigor, to clearly lay out his wishes against death-prolonging treatment. That calm forethought was characteristic of the man he was. Hospice care was better for him, and for us, and it must have actually saved money for the taxpayers too.

When you go to buy a car, the dealer has to clearly display the mileage per gallon on a window sticker. When you buy a refrigerator, you can see its Energy Star rating. That gives you critical information that you wouldn't otherwise know at that moment. But surgical operations are arranged with no clear written statement of their effectiveness, likelihood of repeat operations, complication rates, alternatives, or patient satisfaction levels, not to mention their price. A one-page statement should report that information before surgery.

I think many people have the same experiences that my family and I have had, where you are presented with options about health care choices, or perhaps not presented with options but told what to do, and you feel vulnerable and unsure about how to make a decision. Shared decision-making would educate patients and their family members, and get doctors to understand patients' concerns and hopes, so that together we can come to the most appropriate treatment decisions. Many people talk about patient empowerment and patient engagement. Please pass this bill to make that a reality.

Read my book's chapter on Choosing Surgery.

From a good surgeon to a great man: National Timeout Day

Today is National Timeout Day; this story marks that.

The surgeon had just finished operating on a 65-year-old woman's hand at a satellite location of a Harvard teaching hospital. Her finger had been locked in a bent position ("trigger finger"), but the wrong operation had been performed: she had had surgery to correct carpal tunnel syndrome. The surgeon realized the error as he began dictating his post-surgical note.

Here's how the mix-up happened: A nurse had marked the correct arm to be operated on, but not the incision site. Several surgeons were behind schedule, stressing the staff. Staff moved the patient to a different operating room, so the nurse who prepared the patient for surgery was not present for the procedure. A tourniquet wasn't in the O.R., so a nurse had to get one, which disrupted the documentation of the procedure. The nursing team changed in the middle of the procedure.

As a result of the error, among other changes, time-outs are now performed more carefully during surgeries to verify that safety protocols are being followed.

The surgeon acknowledged his error, and apologized for it. He has since spoken openly to raise awareness among his peers, even writing an article in the New England Journal of Medicine to teach others. As his boss says, the surgeon "has gone from being known as a good surgeon to being known as a great man."

Advice to patient advocates: Verify that a time-out has been performed before surgery begins.

Read stories about choosing surgery, surgeons, and hospitals in my new book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment.

Thanks to Helen Haskell for distributing the source story by Marshall Allen in the June 15 issue of the Las Vegas Sun.

Accomplishments since the IHI Forum by Patient Advocates & Activists

Six months after the IHI Forum in December 2010, here are the progress reports from 22 patient advocates and activists. Others have been making significant progress too; these are the 22 who met the next-day deadline.

Beth Boynton: In March 2011 I presented a brand new workshop at NYU Steinhardt's Forum on Theatre for Public Health. The title of it was "Using Improv to Develop Communication & Collaboration Skills in Healthcare Professionals". The purpose was to raise awareness and provide fun teaching methods that address medical errors resulting from poor communication and/or lack of collaboration.

Kathleen Clark: I recently had an article, entitled "The Collaborative Continuum Associated with Adverse Medical Events," published here in the International Journal of Collaborative Practices. I've planned and facilitated several dialogues in the healthcare system in the county in which I live; and I'm moving forward with my book, tentatively entitled "Bringing Healing to Law and Medicine". Lastly, I'm in the process of interviewing for a 3-month Rotary International Peace Fellowship at a university in Bangkok.

Margo Corbett: Forsyth Tech in Winston-Salem is starting two new programs in 2012, one for Patient Advocates and one for Geri-Aides. I will be teaching my course in the PA program and will be teaching the teachers of the Geri-Aide program to teach some of my material, so they can incorporate it throughout their teaching. I have finally made the contacts I've been looking for just yesterday in the Health Insurance Underwriters Association and will be speaking to two of the regional groups. I am participating in Health Fairs at companies in the region and will be doing Lunch & Learns at some of them. My new book, Dear Doctor, Dear Patient, What every doctor and patient wishes the other knew, but never says or asks, is coming out soon.

Ilene Corina: Our work at PULSE of NY has been overwhelmingly successful. We have had advocacy trainings and patient safety seminars, and our events are filled to capacity by community members. We are receiving a grant from Cautious Patient Foundation which will help us grow our Patient Safety Advisory Council and reach even more community. Our visits to hospitals have grown and are advocating for entire families at the bedside.

Dave deBronkart: Two things: A TEDx talk in Holland, and I participated in a debate in Costco Connection magazine about whether patients should look for medical information online.

Jeni Dingman: Took responsibility for informing the Facebook group via more than 100 posts about specific news stories, events, and opportunities to get involved. I've been assisting in efforts to retain Dr. Don Berwick as the head of CMS. PULSE of Colorado and the Pulse of America Coalition for Healthcare Reform both signed on with the Partnership for Patients.

Ken Farbstein: My book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment, was published in April by Dorland Health's new Professional Patient Advocate Institute. The book uses stories of celebrities, public figures, doctors as patients, and my family to show how to advocate for ill people while partnering with their doctors and nurses. My individual patient advocacy practice, Patient AdvoCare, has been growing.

Carl Flatley: The Sepsis Alliance continues are international awareness campaign, since only 3 out of 10 Americans has heard the word, "sepsis". One of our latest projects is the release and distribution of our Sepsis Emergency video. On July 26, segments of it will air on Rachel Ray along with 3 members of the Sepsis Alliance.

Doug Hall: 1. Completed the design for the PULSE of Florida Patient Safey Services

a. Patient Navigation Services - to find the right physician and facility and care coordination

b. Patient Education Services - basic to comprehensive - one-to-one or one-to-many

c. The Attentive Care Unit - Inpatient Safety Monitoring for safety, comfort and communication

d. Enhanced Post-Discharge Case Management - Better follow-up, fewer re-admissions and better care coordination

e. Adverse Event Disclosure Services for Patients and Disclosure School fr Providers;

2. A Faculty Member for Patient Advocate Webinars by The Professional Patient Advocate Institute PPAI;

3. Created the PULSE Patient Safety Collaborative to encourage sharing of knowledge to help advance grassroots Patient Advocacy; and

4. Expanded the PULSE online Patient Safety Bookstore - now with 2200 books and products.

Carole Hemmelgarn: Completed Master's Degree in Leadership in Patient Safety from University of Illinois Chicago. The past three months I have given 6 talks in various areas of Patient Safety, mostly focusing on the importance of communication and listing to patients, parents, family members, and other assigned advocates.

John James: I've participated in my first meeting of the State of Texas Healthcare Acquired Infection and Patient Adverse Event Panel meeting in Austin. I think this group can make a real difference in patient safety in Texas and could actually give leadership to other states hoping to improve patient safety. I've written six monthly Patient Safety America Newsletters.

Kevin Kavanagh: My most recent publication is "Health care integration: Will physicians lose their voice?" in the Bulletin of the American College of Surgeons. At least two other articles will be published in the medical literature later this year. With 19 others, I submitted a comment on physician's fiduciary responsibility, patient representation, etc., to guide CMS' rule-making on Accountable Care Organizations.

Charles Maclean: I crafted and submitted proposed legislative language on "patient advocacy, wellness, self-responsibility and prevention" to the Oregon Health Care Transformation Task Force. Some of these focus points are being discussed now as part of Oregon health care pending legislation. I conducted the action research resulting in the thought-action stimulus: Patient Advocacy - A Conversation Starter for Health & Health Care Transformation ("From Provider-Centric Fee-for-Service Sickness Care to Patient-Centric Wellness Outcomes Partnership Care Supported By Patient Advocacy as a Shared Right and Responsibility. Includes definitions, self-advocacy, self-education, framing questions, desired outcomes, benefits for health care providers, guiding principles, resources and Appreciative Inquiry action stimulus questions.

Mary Ellen Mannix: The James Matthew Mannix Bill (Pennsylvania) requiring screening for congenital heart defects in all newborns born in birthing facilities and hospitals will be introduced to the Pennsylvania legislature any day now. Senator Daylin Leach (D) is the bill's sponsor! My second book - a guideline to restorative practices/justice in medicine is in the works. I have also held numerous Rattle Wraps, am writing more curriculum for patients & clinicians in the childbirth & maternal health fields, and overall enjoying daily advocacy for moms and their babies through James's Project (and a collaborative presence with The Empowered Patient Coalition).

Karl Maurer: I took back information about IHI to the 15+ members of the Family Advisory Board at Children's Memorial, along with patient safety information. We're going to dedicate at least one meeting a year to patient safety and service excellence in the hospital, and in all our meetings, focus on quality and control. Last night, we the CMH FAB met with the infection control department and reviewed the progress we have made on in-hospital infections - down by 65% since 2005 - and hand washing by staff -95%+, up from 85% in 2005.

Evelyn McKnight: HONOReform Foundation and the Safe Injection Practices Coalition, which includes the CDC, the CDC Foundation and a variety of public and private partners, continues to help lead the One and Only Campaign. HONOReform is building a chapter in Nevada, where it will expand its mission to focus on factors in addition to reuse of needles and syringes that have contributed to the 45+ documented outbreaks in the U.S. over the last 12 years.

Armando Nahum: At the Safe Care Campaign: we are producing a 5 minute video for Patients and/or loved ones in the ICU. "What to expect and how to behave in the ICU environment" will not only educate the public but it will make the caregiver's job a lot easier. The CDC is working with us as consultants with Arjun Srinivasan, MD (Associate Director for Healthcare Associated Infection Prevention Programs, Division of Healthcare Quality Promotion, NCEZID) as the spokesperson.

Dianne Parker: I have testified regularly before our SC Senate Sub-committee on the necessity of removing the Tort Reform coverage for physicians. My story has often been shared with our legislators at their county meetings all over the state. I've been to several states besides my own, spoken to groups of older citizens on Patients Rights - also visited a couple of hospital CEO's with three patients in SC, and some in other states, regarding patient complaints of unsatisfactory care in the ICU for a blind patient, and one who had multiple medical errors.

Mary Ann Peugeot: I participated on the External Review Committee for Picker Institute for grants to be awarded under their Always Events(r) (AE) Initiative. I am continuing as Chair of Vanderbilt's Patient and Family Advisory Council and have also been named to Vanderbilt's Patient Experience Improvement Council where I have been very active. Because of my involvement in projects and activities related to Patient and Family Care at Vanderbilt, I was nominated for a community service award.

Tricia Pil: I continue to blog about patient safety for Lamaze International and posted a piece about the HCAHPS patient satisfaction survey several months ago. I have a letter-to-the-editor at the American Journal of Obstetrics & Gynecology forthcoming (no pub date yet) that provides a critical analysis of an obstetrics patient safety program at a major medical center; this publication is co-authored with fellow IHI PA and healthcare law attorney Kathleen Clark and professional root cause analyst Robert Latino. I completed a class last spring on Lean Six Sigma quality improvement and am working toward official green belt certification. I gave two talks locally on patient safety and medical error in March--one to social workers in health care (Society for Social Work Leadership in Health Care) and the other to quality improvement nurses through the American Society for Quality. I continue to serve on the board of the Pittsburgh Consumer Health Coalition and am delighted to have spearheaded the drive to bring fellow IHI PA Dale Micalizzi to Pittsburgh in August.

Patty Skolnik: Citizens for Patient Safety continues to do presentations nationally regarding The Faces Of Medical Error....From Tears to Transparency: The Story of Michael Skolnik. My husband David has joined me on the road and in the presentations for Q and A. We have also agreed with University of Colorado Hospital to not only do external consumer training but internal staff training for all medical personnel.

Trisha Torrey: Kept nurturing the Every Patient's Advocate network, writing biweekly Thursday emailings of Headlines and Tools for advocates, and organizing webinars. Continued to write and speak on patient empowerment topics, reaching out to patients, advocates, navigators through About.com and Every Patient's Advocate. Was invited for the first time to address providers, both through a series of articles in Physician's Practice Magazine and speaking to two groups of providers through the Alaska Federal Health Care Partnership.

Permanent, pervasive and beyond their control: Non-use of hospital checklists

David Maxfield, Linda Groah, and their research team at VitalSmarts and the Association of periOperative Registered Nurses (AORN) surveyed 2,383 registered nurses about communication breakdowns. For each breakdown, the nurses said whether it had been part of a continuing ["permanent"] pattern, was widespread ["pervasive"], or was within the nurse's control. Here are two of the 50 or so "triple-negative" [permanent, pervasive, and beyond their control] incidents the researchers collected:

"A special graft was ordered and due to arrive at 10:00. The surgeon insisted the day before he had to have this particular graft. The day of surgery the graft was not yet physically in the building but the surgeon insisted we put the patient to sleep. My stand was that unless you were prepared to use something else we should wait until it arrived. All of our checklists and protocols require that all implants and necessary items are available before the case begins. The surgeon said he would [get the graft] if necessary. I felt we were jeopardizing patient care, setting a poor example to the staff and why do we go through all these things in the first place?"

"Inserting central line at bedside in ICU. Used checklist but surgeon refused maximal sterile barrier and in fact, ridiculed me and hospital staff for instituting (this precaution) when there is no 'proof' it works. Hospital does not allow RN to stop procedure so it was inserted without maximal sterile barrier."

Unfortunately, there are times when well-intentioned staff can't speak truth to power.

Advice: A professional patient advocate can help in these situations.

Read about finding and working with a professional patient advocate in Chapter 12 of Getting Your Best Health Care: Real-World Stories for Patient Empowerment.

A true community: At the 30th anniversary of the AIDS epidemic

Today is the 30th anniversary of the announcement of the first deaths from what was later termed AIDS. On June 5, 1981, the Centers for Disease Control published the first report on the epidemic in its Morbidity and Mortality Weekly Report. Now, 30 years later, AIDS is a chronic disease that people live with for decades, with a variety of medicines and lifestyle changes.

Randy Shilts traced the early years of the epidemic in And the Band Played On, an encyclopedic account of the players and the politics. By the four-year mark, he said, the San Francisco gay community had mobilized to fight the epidemic. Numerous AIDS-related organizations had persuaded thousands of local gay men to staff information hot-lines, raise funds for AIDS services, and volunteer to help the stricken. Gays had continued to gain in political strength. At awful cost, they had forged a true community, with a shared sense that they wanted that dream to survive.

Gays' initial efforts to organize had some missteps. For example, Gay Men's Health Crisis had continual internal battles over whether to clearly state how gay men’s sexual practices contributed to the spread of AIDS. There had been great debate over whether their first mass mailing should show the word "gay" in the return address of the organization, in the spring of 1982. Their first newsletter in July 1982, the first nonscientific publication about the epidemic, presented different views on risk reduction.

But they kept at it, and they grew. By August, GMHC had 300 volunteers to provide buddies offering practical services to AIDS victims. By the end of October, they had gotten a meeting with New York City Mayor Ed Koch's liaison to the gay community, marking the first official attention to the epidemic by the city government. By the end of 1983, GMHC had coordinated $3 million worth of volunteer time, and was providing clinical services to about 50 people a week. It was then the only AIDS education program in New York City.

Still, its progress was fitful, and painfully slow. It remained very difficult to get the attention of government officials, until Rock Hudson, a popular actor, died of AIDS. Yet eventually, AIDS activists spurred the more rapid testing of drugs and the expenditure of substantial government research funding. These contributed to the development of AZT and the cocktail of AIDS drugs that were found capable of holding the disease at bay.

Advice to patient safety advocates and activists: Let's learn from the success and setbacks of AIDS activists, and celebrate their success.

Read Chapter 7 of my book, about the ways some patient advocates heroes are building our movement.

The Big Short and Inappropriate Eye Surgery

In The Big Short: Inside the Doomsday Machine, Michael Lewis insightfully dissected the reasons for our financial meltdown. He pinpointed the role of perverse incentives, illustrating his point with a healthcare story:

"Warren Buffett had an acerbic partner, Charlie Munger....If you wanted to predict how people would behave, Munger said, you only had to look at their incentives....Dr. Mike Burry agreed. [He believed] even in life or death situations, doctors, nurses, and patients all responded to bad incentives. In hospitals in which the reimbursement rates for appendectomies ran higher, for instance, the surgeons removed more appendixes. The evolution of eye surgery was another great example. In the 1990s, the ophthalmologists were building careers on performing cataract procedures. They take half an hour or less, and yet Medicare would reimburse them $1,700 a pop. In the late 1990s, Medicare slashed reimbursement levels to around $450 per procedure, and the incomes of the surgically minded ophthalmologists fell. Across America, ophthalmologists rediscovered an obscure and risky procedure called radial keratotomy, and there was a boom in surgery to correct small impairments of vision. The inadequately studied procedure was marketed as a cure for the suffering of contact lens wearers. 'In reality,' says Burry, 'the incentive was to maintain their high, often one-to-two-million-dollar incomes, and the justification followed. The industry rushed to come up with something less dangerous than radial keratotomy, and Lasik was eventually born.'"

Read a story in Chapter 7 in my book, about my own decision on elective surgery.