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From DCpatient to CTcaregiver

May 17th, 2010

While in NYC for business I received a call from my mother that my father had been admitted to the hospital. I raced home to Connecticut arriving at the hospital to find my father on a gurney in the hallway, pale and connected to oxygen and other tubing, waiting to be wheeled down to testing. I leaned over to kiss his cheek and let him know I was there.

So began my transition from DCpatient to CTcaregiver.

I’ve spent the bulk of the past two weeks trying to coordinate care for my father and support my mother as they struggled to understand and adapt to this health crisis and what it means moving forward. Now was the time to see if I could actually apply all the fancy patient advocacy talk and e-patientism to a situation closer to home.

1st Lesson: Being a caregiver is much harder than being a patient. You get no meds and never get to lie down.

2nd Lesson: Education is not Empowerment.
My parents are very smart people. My mother has a PhD and my father has 2 masters degrees. They are retired teachers – my father taught life science. Still the amount of detailed information on the myriad conditions that my father was battling and the pace and format at which this information was given was overwhelming. Also, information was also given without context. For example, in the huge package of information there was a list of the sodium levels of different foods. BFD. What was the recommended goal for how much sodium he should have each day? What should be the limits for sodium per serving he looks for on labels? My task was not to give them more information (although my husband and I were looking up drug information and clinical guidelines on our phones from the hospital room) but to give them tools to help them digest the information and apply it to their lives.

3rd Lesson: Fragmentation of the healthcare system can kill ya.
Now I knew this from my own experience, but since I have the ability to compensate for the gaps and uncoordination of medical care in my own situation, I did not truly appreciate the potential consequences of not getting it right. The most important and impactful things I did while I was with my parents was to get support services in place from the Visiting Nurses Service, schedule follow up appointments with all of their doctors, and to ensure that follow up testing was ordered, conducted, and shared in a timely fashion. My Dad is on coumadin for example, but the order for the INR (the test to see if his blood is being appropriately thinned to avoid clots but not too much) was not given, and then they expected him to travel to the office to have it drawn. IMHO all of this should have been done before discharge.

I could go on and I’m sure I’ll write about this more, but let me leave this post with . . .
Five Things Hospitals Can Do to Make it Easier for Caregivers, Reduce Readmissions, and Improve Patient Care:
1. Upon admission, prompt for ALL doctor’s names and ALL medication. Have a mechanism to alert all a patient’s doctors that the patient has been admitted. My Dad had eye drops that were counterindicated with his blood pressure meds and the ophthalmologist and cardiologist never knew of each other.
2. Proactively provide timely information and updates to family twice a day. (Luckily I knew enough to skulk around the nurses’ station well before posted visiting hours spotting anyone in a white coat or tie who handled my father’s chart to corner them into an update and plan for treatment. It shouldn’t be that hard.)
3. Conduct training. Don’t just give pamphlets before discharge. God bless my 70-something year old mother for figuring out how to wrangle my Dad’s oxygen tank and foley catheter into the car. Good luck trying to get my transplanted southern African-American parents to instantly transition to a low sodium, low fat, complex carb diet without significant intervention.
4. Schedule all follow up and have prescriptions ready upon discharge. The caregiver may not be able to leave the patient to pick up prescriptions and has too much on their hands to play round robins on the phone with multiple providers.
5. Finally, I’d like to request a 24 hour cafeteria. I appreciate the thought of the “Vending Café’”, but I’m never going to order a seafood salad sandwich from a vending machine and I don’t want to end up in the bed next to my Dad because I passed out from hypoglycemia. Caregivers need their strength to shoulder all the burdens laid there by the healthcare system.

National Family Caregivers Association http://www.nfcacares.org/

National Transitions of Care Coordination http://www.ntocc.org/

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Patient Advocacy from the Inside Out

April 12th, 2010

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

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Profiles in Courage 2010 Edition

March 23rd, 2010

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.

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What If We Had to Start From Scratch?

January 25th, 2010

The unexpected happened and Massachusetts elected a Republican to the Senate seat long held by Democratic lion, Ted Kennedy.  Beyond the far-reaching implications for BOTH parties as to how this instructs them to respond the electorate, Scott Brown’s election breaks the fragile 60 vote Democratic Caucus in the Senate, putting healthcare reform as we have come to know it in dire peril.

Many, including myself, do not think that this is a bad thing necessarily. What if we had to start from scratch?  What if we unraveled all the convoluted provisions and the waivers and side deals connected to them and created a bill that truly reflected the needs of patients and healthcare practitioners?  What would this look like?  We’ve come so far away from first principles that it may be hard to recall or recapture, but here’s my short list.

  1. Real cost savings – Few things actually reduce overall costs in healthcare rather than just shift them.  A new healthcare bill should include a) Medical malpractice reform, and b) Payment based on a coordinated care model.
  2. Expanded coverage – We will never get to 100% without automatic universal coverage so stop using that as a goal if we don’t plan to go that far.  We would be able to get closer, more easily by raising the income and category limits on Medicaid and lower age limits to buy into Medicare.  Incentives for small businesses, tax deduction for individual coverage, and allowing children to stay on their parents policies until age 26 would make a significant difference.
  3. Meaningful coverage – accept the insurance company proffer to eliminate pre-existing conditions, guarantee issue, remove lifetime caps, etc.
  4. Improved quality – See 1 and add supporting practices of all sizes to adopt and use electronic medical records (with patient access to their data) and accelerated translation (uptake and adoption) of evidence-based medicine.

Then walk away. Put the pen down. Leave the exchanges, mandates, Louisiana Purchase, state opt-outs in the dust bin of history and bask in the feeling of getting something done.

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The Real Death Panel: USPSTF and Breast Cancer

November 17th, 2009

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/

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Franken Bill Presupposes Doctors and Patients are Stupid

October 23rd, 2009

@PharmaGuy and I exchanged several tweets yesterday afternoon debating the merits of the Senate bill introduced by the junior Senator from Minnesota, Al Franken.  The title of the bill is the “Protecting Americans from Drug Marketing Act” the purpose of which is to deny the tax deduction for advertising and promotional expenses for prescription pharmaceuticals.

Reasons I’ve heard over the years why pharma direct to consumer advertising is bad:

  • Misleads patients into thinking that you can have intimate relations while soaking in separate bath tubs on the beach (sorry, that’s just my confusion)
  • Causes patients to spontaneously come up with symptoms and trick them into believing that there is something their doctors can do about them to make their lives better (no, still me)

You know you scoffed at restless leg syndrome until they found the gene

  • Ok, please leave some comments telling me why Americans are too stupid to risk being subjected to advertising on pharmaceutical products as opposed to any others and why physicians are too tired from explaining that antibiotics can’t cure a cold to resist writing a prescription for anything and everything a patient mentions during their 15 minute visit.  Here’s a start from Public Citizen http://www.citizen.org/publications/release.cfm?ID=7402

But the bill goes on to define advertising and promoting as “includ[ing] direct to consumer advertising in any media and any activity [emphasis mine] designed to promote the use of a prescription pharmaceutical directed to providers or others who may make decisions about the use of prescription pharmaceuticals (including the provision of product samples, free trials, and starter kits).”

So not only are patients not to be trusted, but physicians, nurse practitioners, pharmacists, and a host of healthcare professionals are also apparently unable to discern risks and benefits and decode pharmaceutical advertising and promotional activities.  Things that may arguably fall under this definition:

  • Sales rep and medical science liaison salaries (isn’t everything they do for the purpose of directly or indirectly promoting the use of the products – so longto those tens of thousands of jobs

(For that matter so long to all the positions in PR and advertising that support pharma — Obama didn’t REALLY want jobs created this year anyways)

  • Medication adherence programs (they promote the use of pharmaceutical products)
  • Patient Assistance hotlines and programs like TogetherRxAccess (ok, maybe you can still have them, you just can’t advertise and let patients know that they are there)
  • Patient or physician education programs raising awareness of a disease  (learning about diabetes may encourage people to actually take the treatments)

Now negation of the tax deduction is not the same as outlawing the practice, but it is close when you consider the pressure for profits from Wall Street and the realities of running a business. Please leave this type of regulation to FDA which has the expertise, if funds are properly appropriated, to craft reasonable remedies in the Risk Communication Committee and DDMAC.

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From Health Insurance to Health Plan – A Patient’s View

October 13th, 2009

It has been interesting for me to watch the transformation of the term health insurer to health plan.  Having been insured since in my mother’s womb, I have never been notified that any of my health insurance companies has a plan for my health.  For a health insurance company to be termed a PLAN, in my mind, I would like to see:

1. Prompting and  reimbursing me and my physicians to establish my baseline health metrics and specific health goal(s)

Enrolling in a plan as a new subscriber, a milestone birthday, or just the turn of the calendar could provide the incentive to create a personal plan for my health.  Am I hypertensive? Am I diabetic?  Do I want to lose weight this year, train for a marathon or have a baby?

2. Providing quality and cost assessment information so that I could select the best physicians for my circumstances

See post  A Patient’s Quest for Quality in Healthcare.

3. Facilitating information exchange between my team of physicians

I have a primary care physician, gastroenterologist, transplant hepatologist, gynecologist, reproductive endocrinologist, dermatologist, and from time to time an oncologist, across 4 different practices and medical centers. I would pay anything to have them talk to each other.  Even to have them reliably and regularly share data and view one unified chart and come to a common assessment and plan for my treatment would relieve me of the huge burden of coordination, and no doubt reduce cost, waste, and error.

4. Suggesting, creating networks and reimbursing or providing discounts to complementary services to augment my health such as acupuncture, nutrition counseling, gym membership

90% of what I do to maintain and improve my health happens outside of a doctor’s office.  Health insurer’s buying power and breadth can support my access and use of complementary wellness services to optimize medical treatments and prevent others.

5. Proactively sending me lab results, medication refill and appointment scheduling reminders

Health insurers could add real value by leveraging technology to facilitate my adherence to my treatment plan in the midst of a busy life.

6. Helping me track my progress against an integrated care plan that I create with my team of physicians and complementary providers

Whether building on success or highlighting areas for early intervention, an integrated health plan dashboard with alerts could encourage my focus and active pursuit of health.

Under increased scrutiny in this era of healthcare reform, health insurance companies need to decide and describe how they add value to the healthcare system.   Their access to aggregate data on their members can fuel the integration of care across physicians, hospitals, and pharmacies for patients and support empowered consumer behavior.

Further reading:

The Patient-Centered Care Collaborative

Optum Health, subsidiary of United Health Group

Mayo Clinic Health Policy Center

Google Health

Microsoft HealthVault

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A Patient’s Quest for Quality in Healthcare

October 5th, 2009

As part of an otherwise excellent presentation on the key drivers of rising healthcare costs, two slides purported to demonstrate that overbuilding of healthcare facilities was the result of inappropriate emphasis by patients on facilities’ cleanliness and convenience as measurements of quality.  The presenter’s point was that patients could not be trusted to assess healthcare quality since they chose such obviously silly metrics instead of judging and selecting hospitals or physician practices on the basis of cost, outcomes, or adherence to guidelines.

I had several thoughts in reaction, a few of which I can print – (1) With upwards of 2 million nosocomial (my favorite word) infections a year causing more that 100,000 deaths and complications, cleanliness is nothing to sneeze at; (2) in a past life I was taken to task by the HRSA administrator for making the point that there might be value in having the choice of  a transplant center close enough that families could support their loved one through a traumatic life event so I won’t comment here on the issue of proximity; but most importantly (3) patients judge what they can see.  If we make quality metrics such as cost, outcomes, and adherence to guidelines more accessible to patients then they will include those metrics in their decisionmaking.

And so I embarked on my own journey to see how readily available patient-friendly quality data is for patients.  First I looked for information on hospital information.  Hospital Compare http://www.hospitalcompare.hhs.gov/, an HHS website powered by Medicare data, allowed me to compare hospitals within a radius of my chosen zipcode on process of care (basically guidelines/evidence) adherence, outcomes like death, and patient satisfaction elements like physician communication or nurse responsiveness.  Interestingly, among the subset of local hospitals I chose, quality was similar but median Medicare payment ranged from a two to four fold difference.  Still a limited set of procedures and conditions are included, I have no idea how patients with my demographics and characteristics fared, and the Medicare cost data may bear little relation to what I might actually pay under my insurance let alone self-pay.

Physician information is available in a variety of formats for various fees, typically $9.95 to $24.95 on websites such as HealthGrades http://www.healthgrades.com and Physician Reports http://www.physicianreports.com or compiled in the Consumer’s Checkbook Guide to Top Doctors or Castle Connolly’s various city-specific  Top Doctors.  Plugging in one of my specialist’s name I was able to get disciplinary actions (luckily none), board certifications, years of education, hospital affiliations and even ease of scheduling, however I had no idea from the information provided if my doctor was any good.

Lastly my health insurer has a premium designation that awards stars for quality and cost-efficiency.  I could not find the basis for those designations and having been ill-served by one of their “centers of excellence” in a particular specialty, you can color me skeptical.

My takeaway is that even for a highly motivated, insured, internet savvy patient, with fair familiarity with health care and health care jargon, comprehensive actionable physician and facility information is limited, hard to find or non-existent.

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What We Can Learn About Health Reform from GE’s Robert Galvin MD

September 30th, 2009

As members of Congress continue the arduous work of cobbling together healthcare reform legislation patients and consumers should hope that they are listening to the likes of Dr. Robert Galvin, Chief Medical Officer at General Electric.  I have to admit that after speaking with Dr. Galvin for some time last week about his career in clinical practice and his 15 years in the corporate setting researching, piloting, and sharing best practices in healthcare delivery and financing, I am now a huge fan. http://www.health.mil/dhb/members/20080812/Galvin_final_bio.pdf

I am a fan of:

Large employers, like GE, have served as a testing ground for many of the major elements of health reform.  Let’s use their lessons as a platform to accelerate meaningful changes in the healthcare system that  benefit us all.

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Patient-Owned Health Delivery System in Alaska

September 16th, 2009

Before you think I’ve reverted to writing fiction with the title “Patient-Owned Health Delivery System in Alaska” let me share with you things I learned at a presentation last night at the National Library of Medicine, the originators of Medline Plus and PubMed among other activities. http://www.nlm.nih.gov/

Katherine Gottlieb, MBA, Native Alaskan, and CEO of the Southcentral Foundation described the creation and operation of the Alaskan Native and American Indian owned $160 million corporation which runs healthcare in Anchorage and its surrounds.  This is no casino-fueled initiative, but the result of a decision by the native peoples to take control of the monies previously spent on their behalf by the Indian Health Service and other government entities.  Under  their self-trained and determined native leadership the SouthCentral Foundation reports 50% reductions in urgent care use and hospital admissions than under IHS, 66% fewer C-sections than the national average, 95% childhood immunization rates and 91% customer satisfaction.

Their operating principles are based on considerations for the whole person and the whole community. Their vision is for A Native Community that enjoys physical, mental, emotional and spiritual wellness and they underscore key points of shared responsibility, commitment to quality, and family wellness.

http://www.southcentralfoundation.com/

When will patients in the Lower 48 decide that we can direct and drive healthcare here too?

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