I finally did it. Today I made the plunge and signed up for MDVIP, a so-called concierge or boutique medical practice. What drove me to that decision? Several factors. Becoming a more empowered patient, a more informed patient, I grew increasingly aware of the promise and potential of medicine practiced in a patient-centered fashion. Also, as a busy person the time spent in doctors’ offices and the time I was spending tracking down results and coordinating my care was more than I felt I should have to give to the process. When I went to schedule my last primary care visit and was given a date 3 months away I cracked. Straw meet camel’s back.

Now I can’t go without a primary care physician and with my cavalcade of conditions not just anyone would do. What were my choices? (1) Find another primary care physician who wasn’t, like my PCP, overbooked with patients and undersupported by technology; (2) Pay $2000 for an Executive Health Screening (at the same academic medical center no less) that offered convenient scheduling of a full day of all the tests and examinations I needed but still left me without a longterm relationship with a primary care physician; or (3) sign up with an MDVIP physician who, due to a strategically limited caseload of patients at $1500 a pop could offer the holy grail of true access. Access to a timely appointment, access to the doctor without waiting hours, access by email, and by phone in a timely matter, access to my health records and lab records.

Some may criticize me joining such a practice, akin to putting my kids in private school if I live in a bad school district instead of becoming head of the PTA. As the daughter of schoolteachers who gave a combined 72 years to improving education for others’ children while sending me to the best option for my growth, I say one can support the system of tomorrow without sacrificing to what it is today.

Many more criticize doctors who set up MDVIP practices. If you google MDVIP, a for-profit company based in Florida, as I did, you will find a host of links referring to MDVIP as a scam, a rip-off, for greedy doctors abandoning patients, etc. I say to my fellow patients — Stand down! Take a breath and think about it. Your doctor went to college, medical school, residency, fellowships to learn everything needed to treat you excellently. Unless their families were independently wealthy, they accrued large debt, and now you want them to save your life for the same amount of money that you pay your teenage babysitter. Come on be fair. You say, “but my doctor gives me lots of attention. Why should I pay extra for what I already am or what I should be getting?” Well then you are why the rest of us wait 2 hours. And your doctor is on his or her way to being a burnt out shell who will leave the profession in a few years. The first thing out of the doctor’s mouth when I went to visit the MDVIP practice was, “Under my former practice model I was pressured to spend increasingly less time with patients who had increasingly more problems. I couldn’t do for them what they and I both wanted to be able to do.” Sounds like just the type of doctor we all want.

The only real solution is more primary care physicians. Fully paid tuition, better reimbursement for preventive and coordinating services, and other supports for those who go into and stay in primary care would be one of the best investments this country could make to ensure true access to quality healthcare for all.

Primary Care Evaulation Chart MDVIP vs. Executive Health vs. PCP

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Please Vote!!! Patient Advocacy 2.0
I really wanted to call my presentation Patient Advocacy in 3-D. See why.

I am very excited to have the potential to speak at the 18th annual SXSW® Interactive Festival. This unique forum challenges you to envision the future of innovative technology. Featuring five days of compelling presentations from the brightest minds in emerging media and scores of exciting networking events hosted by industry leaders, SXSW Interactive offers an unbeatable line up of special programs showcasing the best new websites, digital projects, wireless applications, video games and startup ideas the community has to offer. From hands-on training to big-picture analysis, SXSW Interactive has become the place to preview of what is unfolding in the world of creative technology. Join us March 2011 for the panels, the parties, the 14th Annual Interactive Awards, SXSW ScreenBurn, the SXSW Trade Show, SXSW Accelerator and, of course, the inspirational experience that only SXSW can deliver.

My presentation would ask and answer: How can we make patient advocacy more like Avatar? Why would we want to?

Thinking about patient participation in healthcare as an immersive 3-D experience instead of a flat 2-D social media experience can transform personal and public advocacy on health and healthcare delivery issues. Patients as makers of healthcare policy, rather than just commenters on the gaps, flaws, and dysfunctions in policy is the next stage of patient advocacy evolution.

• How has the aggregation of patient voices in online communities created platforms for advocacy?
• What is the difference between personal and public advocacy?
• How can we translate online activism into actual policy and systems change?
• What are the barriers, internal and external, to translation of healthcare 2.0 to healthcare 3-D?
• What opportunities are there for patient advocates to influence policy?
Please vote and please join me (fingers crossed) next March in Austin, TX!
http://panelpicker.sxsw.com/ideas/index/7/presenter:Cryer/category:

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Amy Bassano
Director of Hospital and Ambulatory Services
Centers for Medicare & Medicaid Services

RE: Calendar Year for New Clinical Laboratory Tests Payment Determinations
In Support of Cylex Request for Reconsideration of Crosswalk Decision for CPT Code 86352

From my testimony at the July 22, 2010 Public Meeting

Good morning, my name is Donna Cryer. Today is my 40th birthday. Transplantation works. 16 years ago I was the beneficiary of a very skillful surgical intervention. But I stand here today because of a complex regimen of immunosuppressive medications. I may not be able to stand here 16 years from today if appropriate reimbursement is not given to Cylex’s Immuknow.

Allow me to explain . . .
After graduating from Harvard and between my 1st and 2nd year of law school at Georgetown my body finally succumbed to more than a decade of autoimmune disease and I waited in intensive care for an organ I was eventually blessed to receive. Subsequently I served on staff as a patient affairs specialist at the united network for organ sharing and was invited back as a volunteer on the membership and professional standards committee. Currently I am a member of the board of directors of the American liver foundation and a patient representative to the U.S. Food and Drug Administration. I use Immuknow with my transplant team to manage my care.

I am here today representing myself and speaking in support of Cylex’s request for reconsideration.

I am here to remind us that what we discuss and decide here today are not abstract or academic issues but are life and death to patients like myself who rely on immunomodulation therapies and who rely on third party payors like Medicare & Medicaid to enable our access to approved and validated care.
My remarks will focus on the impact of inadequate reimbursement on patients in three areas: access, cost, and quality.

Access
Inadequate reimbursement of immuknow may prove to be an absolute bar to patient access. Medicare, particularly through ESRD, covers such a large proportion of transplant recipients that hospitals simply will not be able to take on the burden of covering the loss for performing each test and patients will lose out on a unique and necessary tool for managing our complex immunosuppressive regimens.

No other current clinical decision support tool provides for early, actionable information so a clinician can intervene to prevent rejection not just deal with complications.
A personal example: my creatinine has been rising, indicating that the immunosuppressants may be having a nephrotoxic effect. The initial reaction from my physician was to lower my dosage, but because we also did an Immunknow test we saw that my immune system is highly reactive and we risked rejection if we reduced the dosage. We are working on other therapies to reduce the impact on my kidneys. Because I had access to this test, we were able to avert the need for rescue therapy, hospitalization, and possible graft loss.

No other current clinical decision support tool allows personalized treatment, so that an individual’s immune system is balanced with graft survival, risk of infection and long-term consequences.
My doctors did a great job of saving my life and my organ but because we did not have this tool early enough my creatinine is rising, I have osteoporosis and osteonecrosis from too much prednisone, and, these high heels notwithstanding, my orthopedist has told me I’ll need knee replacements. We can do better now. Let’s do better now.

Cost
According to a National Kidney Foundation analysis Medicare will pay on avg. $100k for the 1st year of transplant or retransplant, my 1st year costs were well upwards of $300,000 – to not pay the approximately $600 for a test that can avoid the need for retransplantation seems unwise to say the least.

Let’s be clear, current practice is to use gestalt, accompanied by proxies such as levels of Immunosuppression medication in the blood, enzymes, or if we’ve waited too late, biopsies to diagnose rejection.
Medicare spends an average of $17k per year/per recipient for medication after the 1st year. (which is 80% of costs under part b if transplant is eligible under Medicare) (NKF data)

Because Immunknow use allows for personalized therapy, patients have greater confidence in the treatment plan which promotes greater compliance thereby reducing adherence-related rejection and costs.
Immunknow use in some cases results in lower costs from reduced prescription expenditures or hospital admissions.

Quality

Finally, as a patient it is extremely difficult to trust the U.S. healthcare regulatory system or have confidence in emerging therapies if one agency will not support financially what another agency has defined as the precise method of performing a test to be clinically effective and valid. That is not high quality care; that is not evidence- based medicine. Inadequate reimbursement of Immuknow does not serve patients, the practice of medicine, or the healthcare system. It removes a critical tool for managing transplant recipients and loses sight of the scale and scope of other costs related to ESRD and transplantation in the absence of this assay.

I support Cylex’s request and ask that CMS please grant this request for reconsideration of the crosswalk decision for CPT Code 86352.
Thank you very much.

Disclosure note: I am a consultant to Cylex ( I asked to work with them because I believe in this test), but not paid for this testimony.

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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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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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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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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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@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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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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