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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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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@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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I started the DCPatient blog 6 weeks ago, unsure of the reaction I would receive for my opinions on what patients would like to see from the healthcare system.  Overwhelmingly, the reactions have been very positive and thoughtful with dozens of comments on this blog, LinkedIn, and Twitter.

One repeated criticism has been that I am “too educated” or write at “too high a level for the average patient” or that my postings were “not what they expected from a patient’s blog”.  Interesting.  What should a patient sound like? Write like? Blog about? My Harvard degree did not spare me from becoming ill.  My Georgetown law degree barely enables me to navigate insurance coverage.

While I understand the point that for most Americans issues of literacy, health literacy, numeracy, language and culture, time challenges, and family obligations serve as real barriers for understanding, engaging, and optimally accessing the healthcare system, my education does not make me any less of a patient than the next person in the waiting room.  What it does do, I feel, is obligate me to pick up the mantle for other patients and push, prod, and advocate for changes in healthcare that serve us all.  Regina Hertzlinger, Phd, of Harvard Business School, would call me a marginal consumer.

Last week something remarkable happened, I emerged from the desert to find that there were many others like me.  ePatientDave kindly introduced me to the Society for Participatory Medicine and a host of professional patient provocateurs  just as educated, annoyed, and activated as I hope to be.  Please check them out.

Trisha Torrey, Every Patient’s Advocate

Survive the Journey

Six Until Me

EPatient Connections 2009 Conference

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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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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:

• A physician designing a health plan http://bit.ly/3guTXM
• Emphasis on incentives for patients to choose high-quality low-cost care without unduly limiting choice
• Creating a transparent marketplace so patients have a basis for choice http://www.centerforpaymentreform.org/
• Payments to providers based on achieving quality goals, eliminating waste, and controlling costs in collaboration with other healthcare providers http://www.bridgestoexcellence.org/
• Leveraging the power of purchasers to  compel improvements in patient safety http://www.leapfroggroup.org/

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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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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If we truly wanted to create a patient-centric healthcare system – not insurer-centric, employer-centric, or even physician-centric – I believe that we need to do the following:
1. Redefine healthcare to include a holistic, 360 degree view of health from wellness, to prevention, diagnosis, treatment, rehabilitation, and hopefully back to wellness.
2. Align a payment system, not necessarily, but possibly an insurance system, to support those elements along this 360 degree paradigm that provide actual value, i.e. improve patient outcomes.
3. Provide transparency in pricing. Costs, potential cost-savings, and how those costs were calculated should all be included. Cost and price can be two different things. The government declaring that they need to cut physician payments in Medicare, for example, does not lower the costs of physicians delivering care.
4. Widely disseminate consumer education and patient decision support tools to facilitate informed evaluation of health and medical options.
5. Universal mandatory participation in some type of health insurance or financing mechanism coupled with guaranteed issue. The system should put individual coverage on an even playing field with employer coverage and drop barriers to multi-state or other groupings.
I believe in a system that is consumer-directed, where patients are able to accurately estimate the amount of financial risk they can tolerate for health expenses and can buy reasonably priced coverage for services above that personal level of risk. I believe that patients should have their choice of physicians and be supported and empowered to engage in appropriate self-management by members of their healthcare team. I believe that the most important decisions we make in healthcare involve what we eat, how much we move, choosing not to smoke, and other lifestyle choices, but when our genes, fate, or attempt to stay forever young fail us, the availability of quality medical care that does not bankrupt us in the best interest of all.

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