I spend almost every waking hour fixated on health and healthcare – my own, my family’s, the nation’s. I do research, discuss, or meet with innovative thinkers and practitioners on economic theories and cutting edge technology. Yet I think the best lessons I’ve had in a while on the true meaning of health came Saturday night at the fantastic concert with Sting and the Royal Philharmonic Concert Orchestra.
1. I have had a skip in my step for 2 months since my husband told me he had bought the tickets. Many studies have shown that having a happy marriage can lower blood pressure, inflammation, and levels of stress hormones.
2. Likewise, having something to look forward to all week, seemed to lighten the load of every task I undertook.
3. The music at the concert somehow allowed me to both transcend and fully inhabit myself in a way that my poor but earnest attempts at daily meditation never reach.
4. I danced for much of the 3 hour set and certainly never thought of it as exercise.
5. Watching, being in the presence of people creatively and passionately expressing themselves inspired me to do the same.
6. Finally, experiencing the music live in the company of hundreds of others similarly enjoying themselves gave a sense of universal harmonization and wellbeing, a comfort in alignment.

So what did I learn about health at the Sting concert?
Health is a manifestation of a positive emotional and mental state much more than simply lack of physical disease.

Since I bought a new car 2 weeks ago, I’ve noticed every car advertisement whether in print, on tv, or on the radio.  Similarly, 2 years ago, when we began facing conception challenges I started noticing advertising for fertility clinics. It’s as if they sprang up like the soldiers made from dragon’s teeth in the original Jason and the Argonauts movie – suddenly they are everywhere.

The further along in this journey I travel the more these ads bother me.  I appreciate their presence, acknowledging that these are medical issues that can be treated and that there is no shame in seeking treatment, however, the ads usually read something like this:

“ Where Dreams come to Life” or some other mystical, aspirational marketing statement.

List of Services: the higher tech the better, as if we are in some fertility arms race — “egg donation, Intracytoplasmic  Sperm Injection ( ICSI), Preimplantation Genetic Diagnosis . . .”

“ Nationally Acclaimed, Highly Successful”

I understand, just like cardiac or prostate cancer centers that advertise their new Da Vinci robot, we are supposed to be comforted by and attracted to the facility with the latest and greatest, also practices need a certain volume to amortize the cost of expensive equipment of highly sought after sub-specialists like geneticists.

However, I wish that there was a center brave, bold, and honest enough to put forward the following:

There are no guarantees

We will work with you to 1^st help get you and your partner in the best physical shape pre-conception.

Then we will leverage the best of Eastern and Western Medicine to optimize your own reproductive cycle.

We have meditation and yoga classes and resources on site since this process is inherently stressful.

This will solve a high percentage of couples’ conception challenges.

As for the rest we will THEN apply only so much medicine, science, and surgery as is necessary to reach your particular family building goal whether that be your own genetic child, a pregnancy, or give you the information you need to assess when adoption or childfree living are options.  We will not pressure you into believing that all these are the same.

This may take a month or several years.  Depending on your insurance coverage it will likely be expensive.

We are your partner and will do everything we know for you.  The rest is really in God’s Hands.

Call us.

Several months ago I wrote about the scourge of nosocomial (still my favorite word) or hospital-acquired/healthcare associated infections (HAI) as one of the most important indicators to measure and monitor in an assessment of healthcare quality. HHS testified as much to Congress last month.
See Post: A Patient’s Quest for Quality in Healthcare
After spending many days in the hospital with my father, watching him beset by multiple tubes and catherers, noting the prophylactic antibiotics in his IV and the fact that his hospital staff was diligent about washing hands, the topic seems ripe for revisiting.
See Post: From DCpatient to CTcaregiver

It seemed timely that I was sent information on an initiative sponsored by Kimberly-Clark, the Not on My Watch Hospital Acquired Infection Prevention Campaign, that aims to reduce these infections. I’m sure with Medicare no longer paying for readmissions caused by preventable infections, many hospitals are keenly interested in information on how to reduce their infection rates. Most know Kimberly-Clark as the makers of Kleenex and other home icon products. I certainly didn’t realize they had a sophisticated healthcare division. (Disclosure/Non-disclosure: I am not compensated in any way for this post)

Some important facts to note:

In a quality report to Congress in mid-April 2010, the Health and Human Services (HHS) department noted that “very little progress on eliminating hospital-acquired infections” has been made since the problems were brought to light more than a decade ago. In addition to the potentially fatal considerations for patients, this lack of progress in preventing infections could have financial ramifications for the hospitals as the new health care overhaul law comes to fruition over the next few years.”

The Centers for Disease Control (CDC) of the U.S. Department of Health and Human Services notes that 5-10 percent of the patients admitted to acute care hospitals and long-term care facilities in the U.S. develop hospital-acquired infections, with an annual total of more than 1 million people. These infections are usually related to a procedure used to diagnosis or treat the patient’s initial injury or illness. A CDC report published in March-April 2007 estimated the number of U.S. deaths from healthcare associated infections in 2002 at 98,987.

The CDC has estimated that about 36 percent of these infections are preventable through strict adherence to guidelines by healthcare workers when caring for patients. These infections can be extremely dangerous because they are occurring in people whose health is already compromised. HAI often leads to lengthening hospitalization, increasing the likelihood of readmission, and adding sizably to the cost of care per patient. Financially, HAIs represent an estimated annual impact of $6.7 billion to healthcare facilities.

Two of the most important things that patients and caregivers can do are to ask about infection reduction practices in their hospital and insist that everyone washes their hands (from doctors to visitors).

Not on My Watch HAI Resources: http://www.haiwatch.com/

HHS Action Plan to reduce Healthcare Associated Infections: http://www.hhs.gov/ophs/initiatives/hai/research.html

The traditional view of patient advocacy is a group of patients in various stages of a condition – sick, well, wheelchaired, put your youngest and oldest members up front – storming Capitol Hill for photo ops on the steps and protesting outside an office and getting a perfunctory “we support research” from the junior staff before leaving. Surely some long-suffering well-connected heads of patient advocacy organizations and their hand-picked favorite patient are invited to testify at a hearing or opine on a bill as one of 100 in a room at a public session.

If we look closer, though, sometimes patient advocacy has a different look. Sometimes patient advocates are the policymakers themselves. Two recent experiences brought home to me the power of policymakers and key influencers sensitized by their own experiences with facing a life-threatening diagnosis, navigating a dysfunctional health system, and balancing an illness with work, family, and life.

The Honorable Hank Johnson, member of congress from Georgia’s 4th district, gave his support for the HR 3974, the Viral Hepatitis and Liver Cancer Control & Prevention Act at a press conference for the National Viral Hepatitis Roundtable after fighting his own battle with hepatitis C. Mr. Johnson discussed the impact of the legislation not only from an understanding of the statistics, as did his colleague Bill Cassidy, a practicing hepatologist in addition to representing his Louisianan constituency, but from his understanding of the stigma, fear, loss of identity, and perceived lack of productivity and potential.

My second experience in the same week came from a conversation with Billy Tauzin, the soon to retire head of the Pharmaceutical Research and Manufacturers of America. Mr. Tauzin, a former Republican and Democratic member of Congress and instrumental to the passage of Medicare Part D’s drug benefit is credited often as a savvy politician and negotiator. I appreciate how he has put patients’ voices and experiences, including his own, front and center, better connecting the products that the industry produces to the lives they save that anyone else. And he carries this voice and message to places – high-stakes formal and informal negotiations — where it truly matters. His advocacy has an authenticity money cannot buy having originated in a hospital bed, with a dire diagnosis and a medication that restored him to health.

This is not a plea for emotion-based legislation or for everyone to tout their own personal interest above what’s best for the country, but if policymakers are expected to bring their experiences in banking, business, and law to bear on their work, why shouldn’t they bring their experience as patients. While I wish every member of congress good health, I hope that if they do have personal experience with the healthcare system that they channel that into making and supporting relevant, reality-based healthcare policy.

http://www.newsweek.com/id/230061

I remember reading President John F. Kennedy’s Profiles in Courage when I was a girl and being inspired by the recounting of Senators standing up to colleagues and constituents alike to speak out and vote on principle for what they thought was in the highest interest of the nation. Courage was the word that has most frequently come to mind with the passage of the Patient Protection and Affordable Care Act, better known and the Health Reform Bill, Sunday night in the House of Representatives. Despite levels of vitriol not seen since the Civil Rights Movement of the 1960s, complete with shouting, spitting, and name-calling outside and inside the Chamber, Democratic members of Congress came together to lead. With this bill the administration made a statement about who we are as a nation, as a people, a nation that cares and supports all its citizens, a nation that understands that a foundation of health is necessary for enjoyment of all our constitutional rights and the many privileges of living and working in this great country, a nation that can find money for peace as well as war.

Some say that this is a government take-over of healthcare. It is not. Insurance companies, drug manufacturers, and hospitals are still standing and benefit from more insured. Small businesses are key beneficiaries and there will greater opportunities for job mobility without fear of losing and never regaining insurance coverage one can afford. Patients benefit. Almost all of us will have a “pre-existing condition” if we live long enough.

Some say it costs too much. How much is too much for health? Ralph Waldo Emerson once said that “The first wealth is health”. We would do well to remember that. Do we need to do more to reduce (not just shift) costs of healthcare while maintaining/improving quality? Yes. However, one bill is not required to do all things.
If the purpose of government in a capitalistic, constitutional democracy is to do collectively what we cannot do individually to ensure a strong, stable and prosperous country then this Democratic Congress has done its job. They have my vote not only in the next election, but for the next edition of Profiles in Courage.

Dear Friend of Health and Patient Advocacy,

While we all wait to learn the results of the tremendous public debate on expanded health care and insurance reform, significant changes in the practice of medicine and delivery of health care are proceeding non-stop. Electronic health records are one example of how technology is transforming patient-provider interactions, but digitalization is also being applied to new devices and medical technologies. When combined with wireless communication, patient and diagnostic data can be uploaded from and sent to all locations with an Internet connection. For patients with chronic conditions anywhere or living in remote areas, this means vital signs and many health conditions can be monitored and reported without limitations of geography, transportation or time. But one more change is also quickly revolutionizing health care and that is genomic applications.

Now, the Friends of the National Library of Medicine has organized front-line developers and users of these new technologies in a ground-breaking two-day conference at the Natcher Center at the National Institutes of Health in Bethesda, MD to highlight how these changes are fostering true patient-centered care and creating a new “e-Patient” paradigm. The conference will also put the patient experience at the forefront of the presentations and consider the meaning of comparative effectiveness evaluation in a time of personalized health care.

Although the early registration deadline is past, the Friends of the National Library of Medicine is offering a 50% registration discount to personnel associated with nonprofit and patient advocacy organizations. You can review the entire ePatient program at http://www.fnlm.org, but to register at the $195 rate, please send an email requesting this special rate to Sarah Pease at spease@oai-usa.com.

Thank you, and I hope to see you at FNLM’s ePatient conference on April 6-7, 2010.

Download the promotional flyer

Sincerely,

Richard Gelula
Executive Director
Friends of the National Library of Medicine

P.S. Flash Update: Dr. David Blumenthal, the Administration’s National Coordinator for Health Information Technology, has confirmed as keynote speaker. Other keynotes will be given by Susan Dentzer and Ewe Reinhardt as well as presentations by leaders in research, technology, industry, patient advocacy and other topics.

I had a call this morning with the head of a huge initiative in healthcare that invited the patient perspective into the process in the fourth year of the effort, despite the prominence of the term patient-centered in their name.  One of the reasons was that, “patients were hard to find”.  Now I know what she meant – she wanted patients who were able to speak beyond the specifics of their personal experience and had the professional skills and demeanor to go toe to toe with physicians, hospitals, and other business executives.  She wanted qualified patients.

I had a sense of déjà vu.  This felt to me much like the corporate recruiter lamenting that qualified Black candidates were so hard to find.   They then proceed to use the same handful for all board positions or job openings.  Now I see both educated, talented African Americans and articulate patient advocates everywhere I go ( not necessarily in the same places) so I thought I could use the same techniques to offer them to the corporate and policymaking worlds.

The best way to find qualified Black candidates is to (1) ask current Black executives to recommend some and (2) go where African Americans congregate.  Likewise, it seems the way to identify and attract patients willing to speak and serve on behalf of other patients is to (1) ask active patient advocates (and I don’t just mean the CEOs of patient advocacy organizations who may be excellent professional association managers, but may not be able to articulate the visceral experience of someone living with or having survived a condition) and (2) go where patients go – hospitals, doctors offices, and yes, online.

So I’m asking you.  Are you in?  Will you step up yourself or pass this message along to others you know who may be appropriate?  Please send your name and bio or resume to me at dcpatient@dcpatient.us if you’d like to be part of the Patient’s Bureau I’m creating to serve as a referral source to conference planners, policy committees, and government agencies so no one can ever again have an excuse not to include the patient perspective.  I’ll also do a follow up post listing those names I am permitted to name so word gets out.

Thank you!

As the 4^th major storm this season hits Washington, DC I received an email (thankfully I still have power) from the National Kidney Foundation calling for drivers of 4x4s to help transport dialysis patients. Six thousand patients need dialysis in the DC area alone.  Possessing a small vehicle woefully unsuited for the task I could not help directly, but it made me think about what these crises mean for patients who rely on hospital-based services, or simply electricity and heat to be able to manage their conditions.

What can patients do to ensure that they have access to care during emergencies?

1. Have extra medication on hand.  You may not be able to get that refill by mail order or even from the pharmacy across the street.
2. Have your own backup plan. Contact a neighbor, family member, or work with your hospital social worker to proactively identify a volunteer to check on you, drive you for care, or provide a warm place to stay overnight and plug in your equipment.
3. Ask your doctor or healthcare team if home dialysis or temporary home-based care is appropriate for you so you don’t have to leave your house in unsafe circumstances. Do your family members know how to administer your shots or IVs?  Get them trained!

Those of us with chronic conditions are accustomed to making plans when we travel.  I now realize that we need to be as diligent when we are at home.

Volunteer to help Dialysis Patients

The end of 2009 and beginning of this year have been spent on determining how pharmaceutical companies in particular and corporations in general can engage effectively and appropriately with consumers and patients in online environments whether social media or static.

Lost in the conversation is that pharma has not yet perfected how to engage effectively and appropriately consistently in the real world with patient groups and communities.  As my basketball coach/father would always say, “Never forget the fundamentals”.

I believe the fundamentals of working with patient groups and communities (as well as their physician counterparts)  can be captured by my three R’s of strategic alliance development.

Strategic alliance development is the cultivation and active engagement with select stakeholders in a manner that is (1) relevant (2) respectful, and (3) recurrent.

Relevant – Engage in a fashion that reflects you understand what the mission, priorities, and capabilities of the organization.  What are the needs, gaps, and concerns of that patient population?  Make sure your science, messaging, and outreach meets those.  Likewise, relevant organizations and opinion leaders will be those that have the visibility, credibility, and capacity to advance your specific business objectives.  Every organization is not an appropriate partner for every objective.

Respectful – Patient groups are not waiting to do your bidding and patient advocates and association leaders are important players in healthcare.  Organizations are often eager to co-create meaningful programs, events, and informational experiences when treated as full partners or leaders of the process. Also, don’t send junior marketing people or your agency minions to senior level meetings.  Vice president-level or medical affairs participation may be necessary to demonstrate a serious commitment and substantive intent.

Recurrent – Frequent and consistent interactions and communications are valued by patient groups beyond financial contributions and differentiate mere corporate sponsors from true community members.

The ultimate goal in strategic alliance development is to be valued by the community as a member of the community. Membership validation translates into positive market share and share of voice.

Let’s get it right in the real world 1^st.

In today’s Annals of Internal Medicine and splashed across the front pages of many major newspapers are the shocking new recommendations of the U.S. Preventive Services Task Force (USPSTF) that:

1. Women should not begin routine mammograms until age 50 (instead of the current age 40)
2. Women should not be taught to do monthly self-examinations
3. Physician/clinical breast exams have insufficient evidence of benefit.

Was there a new study that changed their minds? No, just some computer modeling.

Did this modeling show that lives would be saved?  No, annual mammography for all women beginning at age 40 reduced the death rate from breast cancer by 15%, yes, fifteen percent.  According the American Cancer Society in 2009, among women younger than 45 – 6, 460 were diagnosed with in situ ( confined to the breast) cancer; 18,640 had invasive breast cancer; and 2,820 died.  These women and their families don’t matter? Apparently mammography saving lives is not a persuasive argument for these folks.

The justification of the USPSTF and its supporters – false positive readings of earlier screening may cause anxiety and 33/1000 women may have an unnecessary biopsy.

Now I don’t take this lightly.  I was diagnosed with high grades of dysplasia (cellular changes on their way to becoming cancerous) and have had multiple biopsies of various body parts in my 20s and the “anxiety” of a false positive (the false parts later leads to relief) does not even come close to the joy of being alive.

What is the U.S. Preventative Services Task Force for if they’re not for prevention?  They’ve recently torpedoed prostate cancer and Peripheral Arterial Disease (PAD) screening.  Economists may say that they are for evidence-based public health policy, I see rationed care and justification for reduced insurance reimbursement.  Talk about a death panel.

Resources:

Annals of Internal Medicine – USPSTF recommendations   on breast cancer screening http://www.annals.org/content/151/10/716.full

American Cancer Society response to USPSTF recommendation http://www.cancer.org/docroot/MED/content/MED_2_1x_American_Cancer_Society_Responds_to_Changes_to_USPSTF_Mammography_Guidelines.asp

USPSTF Information including Membership http://www.ahrq.gov/clinic/uspstfab.htm

National Breast Cancer Coalition supports new recommendations http://www.stopbreastcancer.org/