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What Patients Want From HIT

November 8th, 2010

I am privileged to have been invited to speak at two conferences this week to lend the patient perspective to panels on the future of health information technology. Kudos to each meeting planner and moderator who prevailed upon their colleagues to include a patient as an active participant in the thoughtleadership and agenda setting that occurs during these meetings, shaping the perspective of attendees across stakeholder segments and planting the seeds of what will bloom into policy and regulation in public and private sectors.

In preparation, I’d love to share my initial thoughts with you, Dear Reader, and ask for your suggestions for my remarks.

I see the essential question as: What do patients want from HIT? (EMRs, EHRs, PHRs)

My answer has seven principles:

1. Comprehensiveness

2. Accuracy

3. Priority

4. Safety

5. Efficiency

6. Privacy

7. Quality

Comprehensiveness: An electronic medical record should aggregate all my information across time, specialties, and institutions/practices. A record that does not hold my historical records from all my doctors no matter where I was treated can be misleading to the point of peril.

Accuracy: The information must be correct to be useful. And please make sure my record only holds conditions, lab results, notes, and images that actually belong to me.

Priority: My ideal EMR would highlight the important information in my record for my physician, organizing and alerting her to key issues, new results, missing information. Simply distinguishing between conditions successfully treated in the past from ongoing conditions would be a step up from some current offerings.

Safety: I was thrilled to see the new barcode scanners at my local hospital reducing potential medical errors by checking patient identification bracelets against each medication before administration. Checking for drug interactions, allergies, avoiding overdosing are all important abilities for HIT solutions.

Efficiency: I could spend all night listing ways that the average physician office can be less disorganized. Tops on my wish list are the functionality to send lab results, e-prescribe, schedule appointments, send reminders, instructions for procedures, and orders for bloodwork.  I’m sure many of you would have guessed that my most pressing desire would be to be able to contact my doctor by email. While that would be nice, I am so much more interested in my doctors emailing and coordinating my care with each other before they get around to talking with me.

Privacy: There is a spectrum of comfort level with sharing and release of even seemingly innocuous personal health information. In general I believe that most patients would like to have systems that facilitate appropriate sharing of information for purposes of treatment, more individual or consented release of information (even deidentified) for research purposes, and are concerned about discrimination in employment and other settings if information is made public.

Quality: HIT contributions to quality are predicated on everything listed above. One additional significant way that EMRs  can improve quality of healthcare delivered is to accelerate the translation of new science, guidelines, or regulatory information to healthcare practitioners.

As a patient, a decidedly non-techie patient, unless you involve me throughout development of health information systems and keep a laser focus on the practicalities of care and research your vast expenditures of time and resources may all be for naught. You can build it, but I may not come. Thanks for finally asking what is meaningful use to me.

The 6th Annual World Healthcare Innovation and Technology Congress

http://worldcongress.com/events/HL10010/index.cfm?confCode=HL10010

Preconference to the American Academy of Nursing’s 37th Annual Meeting and Conference Transforming Nursing through Informatics and technology: Implications for Practice, Education & Policy.

http://www.aannet.org/files/Onsite_Program_2010.pdf

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Epatient Experts

September 30th, 2010

Having spent the past week participating in a workshop for FDA patient representatives which included sessions on safety analysis and pharmacokinetics, giving a presentation on ways that e-patients can advance clinical research at the American Academy for the Advancement of Science, and being inspired by the E-Patient Connections conference in Philadelphia, I admit to being a bit tweaked at being told in ENT surgeon, Martin Young’s blog post “Are E-patients Experts in Their Own Diseases?” that I have no expertise to offer.  I agree with the central point, particularly after a long conversation with my physician-husband, that patient bloggers should not make definitive recommendations about individual treatments for individual patients, but would be better off couching their remarks as based on whatever experience they have and instead offering key questions to raise or processing for evaluating options.  However, I’d like to make two points (1) the case for e-patient expertise and (2) why patients turn to e-patient bloggers in the 1st place.

The case for e-patient expertise.

Not all patients who go online are e-patients or purport to be experts in any form or fashion.  They are simply seeking information to help them make sense of some health issue intruding into their everyday lives.  There is a burgeoning cohort of patients, however, who not only manage their own conditions in great detail, but read scientific journals, attend medical conferences, and online and off interact with hundreds if not thousands of patients (and often physicians).  Wego Health does a great job of describing the depth and breadth of experience of this small percentage of health activists.  To dismiss this group as simply being experts on themselves is shortsighted.  They may not have the clinical expertise of a top physician thoughtleader but they have a range of insights and expertise in the disease state, in the field,  and are often more well-rounded and informed than an average MD in one practice setting.   I’d love the opportunity for CPE – continuing patient education – alongside CME.  While the usual patient education brochures are great (I’ve even written some) as patients advance in their sophistication many of us would appreciate a level of education more akin to our physicians but with slightly less jargon and some support on the biostatistics.

Why patients turn to e-patient bloggers in the 1st place

I think we can all agree that the ideal scenario is for patients is to have a relationship with a highly-knowledgeable physician, or team of physicians who work collaboratively, who has the time to respectfully listen to all of our concerns and issues, ask probing questions, conduct comprehensive exams, order the right tests, and feed back the diagnostic information in terms we can understand, in concepts we can buy into, and translate into treatment plans that work with our lifestyles and values. Few patients have that.  Not all of us can have @DrDannySands or @tedeytan as our physicians, unfortunately. Nor does the current healthcare “system” support physicians who would love to practice this way.

Too many patients feel rushed, dismissed, patronized, and confused.  They return home asking themselves, “what did that mean?” and “what do I do next?”  Good luck trying to communicate with your doctor or the doctor’s office by phone or email to get real answers at the time and in the setting where are comfortable and truly prepared to have the discussion.  That’s when the online search begins for clinical definitions, symptoms, treatment options, but more importantly someone to help make sense of it all and help a patient figure out what all this information can mean for them and their lives.  E-patient bloggers and online forums are viewed as credible sources for patients because they are psychologically safe places, patients can control the timing of the interaction, and because the information presented is relevant and personal.  Doctors you created this gap. I’d be happy to lay not my laptop if you would fill it.

Excellent posts on the subect by @RAwarrior
http://hjluks.posterous.com/healthcare-and-social-media-are-e-patients-cr

http://rawarrior.com/epatients-role-in-healthcare-social-media-do-doctors-hate-blogs/

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Hospitalization 2000 vs 2010

September 15th, 2010

It had been almost a decade since my last hospitalization. Late last week when I was admitted for a massive GI infection I realized that some things had changed and some things had stayed the same since the last time I had taken up residence in an academic medical center.

The Changes

  • Technology – from my bar coded patient ID bracelet to the handheld scanners the nurses used to log medication administration, the advances in use of technology was noticeable.  Lab results from the emergency department were readily available to my gastroenterologist. Mobile computer documentation stations dotted the hallways.
  • Communication – We never felt we had to chase down information. And I swear there was corporate training in the phrase “you know your body best” for the number of times it was repeated by staff.  Although we waited several hours before an inpatient bed was ready, treatment was started, results were shared as they came in, and we were checked on by volunteers, nurses and medical students between visits from the residents and attendings.
  • Emphasis on patient safety – my room was plastered with fall avoidance advice — “call don’t fall” was my favorite – hand washing stations and reminders abounded, and each medication/intervention was double checked by staff and electronically.
  • Med students – when did they get so young?! 1000 thanks to the student who tipped me off to the fact that the branded form of my immunosuppressant was not on formulary and I might want to bring it from home.
  • Me – the questions that I asked and the authority with which I raised issues have increased tremendously over a decade.   The improved clinical knowledge of my conditions and the health system navigation savvy made me a much more effective advocate for my care.  My comfort level and confidence in my knowledge of myself was an asset to accurate diagnosis and acceleration of treatment decisions. (ok, sometimes I had my physician husband voice my request, but still . . .)

The Same

  • It’s All About the Nurses: Making friends with the nurses is the key to a positive patient experience.  While I’m sure everyone on the floor got excellent care, friendly nurses made sure that my poking and prodding started at 7am vs  5:30am because they knew  I was not an early riser in the best of circumstances and  slipped me a copy of all my blood test results so my husband and I fully prepared with thoughts and questions by the time by doctors came ‘round.
  • Hospital food: Dr. William Osler once said, “let food be thy medicine”. That memo never reached the hospital food service folks.  Having the opportunity to survey both the clear liquid and soft bland solid diets I was astounded by the missed opportunity to support my clinical care through nutrition or even to teach proper eating to patients.
  • Me – I still bring in my own pajamas and robe because I hate hospital gowns.  I still can drive an IV pole like Danica Patrick. And I am still so grateful to be the beneficiary of revolutionary medical care that allows me to be alive and enjoy this rich life God has given me.

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Why I Chose A Concierge Medicine Practice

August 18th, 2010

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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Redefining Success in Transplantation

June 27th, 2010

Sixteen years ago this September, I was blessed to receive a liver transplant. Having been diagnosed with two auto-immune conditions as a teen, I was more than receptive to discussions with my transplant team of surgeons, physicians, and nurses on how to suppress my immune system so that I would not reject the organ.  Only recently have I realized that something was missing from that discussion.

With the five year patient survival rates for liver transplants at approximately 70%, depending on initial diagnosis, most recipients can expect to recover and return to work, school families – LIFE.  However, the longterm consequences of overimmunosuppression are seldom discussed, except for increased susceptibility to infections and increased risk of cancer.  After talks with my orthopedist about my diagnosis of osteoporosis, my primary care physician about a rise in my creatinine, and alerts about implications of immunosuppression on hypertension and cardiovascular risk, I have come to better appreciate that harmonizing the immune system rather than knocking it out should be the goal of post-transplant management.

Although approaches and protocols certainly differ by transplant center and even by transplant team, my sense is that the prevailing philosophy is still to prescribe as much immunosuppression as the individual will bear to preserve the organ.  I would like to argue that the goal of transplantation today should be to balance and optimize the individual’s immune system for graft survival and long term optimal health.

The tools most transplant centers use to monitor and manage immunosuppression are, for the most part, blunt instruments that measure levels of immunosuppressive medication in the blood or damage to organs.  I have recently been tested using an immune system function assay called ImmuKnow made by Cylex  (http://www.cylex.net/hcp.html) and found that despite therapeutic levels of immunosuppressive medication (I take Prograf and Imuran) my immune system is still highly active.  This empowered me to push back on my transplant hepatologist’s recommendation to reduce my immunosuppression further. We were able to have a discussion based on my personal immune system response and look for other ways to ameliorate some of my symptoms in a way that does not expose me to increased risk of rejection.

I’ve been surprised to find out that although there is this FDA-cleared test that gives such useful information to guide therapy, supported by more than 120 studies and 200 publications, most transplant centers haven’t yet adopted it and few other patients know about it.  Although my insurance covers the test (why not, compared to the cost of my medication or unthinkable, another transplant) some insurance companies, have denied coverage or are in the process of making that decision.  If you’ve used ImmuKnow or would like to have access to it in the future consider contacting the following fine insurance executives:

BCBS Patients in PA should send comments to:

Virginia Calega, MD

Highmark Blue Shield

Medical Management and Policy

125th Ave Suite P4105

Pittsburgh, PA 15222

Phone: (412) 544-7000
email: virginia.calega@highmark.com

Assistant: Marcine Benton

Ext: 42640

Subject: Cellular Function Assay

Policy Number: Z-24 Miscellaneous Services

Effective 2/15/10 – Highmark BCBS , general policy bulletin – lists 86352 (and a number of codes) as Investigational (no documentation of review of specific medical literature, clinical utility or patient impacted has been noted in the policy bulletin)

BCBS Patients in Texas should send comments to:

Allan Chernov, MD

Blue Cross Blue Shield of Texas

Medical Director

1001 East Lookout Dr

Suite B – 10.408

Richardson, TX 75082

Email: allan_chernov@bcbstx.com

Phone: (972) 766-1149

Assistant :

Holly Rock: 972-766-2011

Subject: Immune Cell Function Assay in Solid Organ Transplantation

Policy #:  MED207.147

Effective: 1/1/10 – BCBS Texas is considered experimental, investigational and unproven  (need to hear from patients about real world experience and how this is important to their quality of life , care and treatment)

BCBS Patients in Illinois should send comments to:

Kim Reed, MD

Blue Cross and Blue Shield of Illinois

Medical Director

300 East Randolph Street

Chicago, Illinois  60601

Email: reedk@bcbsil.com

Phone: (312) 653-5487

Subject: Immune Cell Function Assay in Solid Organ Transplantation

Policy #:  MED207.147

Effective: 1/1/10 – BCBS Illinois is considered experimental, investigational and unproven  (need to hear from patients about real world experience and how this is important to their quality of life , care and treatment)

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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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Bringing Calm to the Chaos of Your Doctor’s Visits

December 8th, 2009

Three things neatly intersected to compel me to write this blog post:

  1. Reading How Doctor’s Think by Jerome Groopman which I strongly urge every patient to read and then send copies to all your physicians to create the most productive healthcare partnerships.
  2. Time spent with the leadership of the American College of Physicians Foundation.  The ACP is a founding member of the Patient-Centered Medical Home initiative and is very thoughtful about how physician practices can better serve patient needs and improve outcomes.
  3. Preparing to be interviewed for the Chaos Solutions Blog Talk Radio show, my 1st foray into this medium. http://www.blogtalkradio.com/chaossolutions

Far from being a nerve-wracking event I believe that visits to the doctor’s office can be an empowering experience and an essential step to living the fullest, healthiest life possible.

My recommendations involve the 3 O’s – Observe, Organize, and Obtain.

  1. Observe yourself for at least a week (women perhaps a month or whole menstrual cycle) before your visit.
    • What are you eating and how is your body reacting?
    • How are you sleeping?
    • Do you get out of breathe going up the stairs?
    • Do you have swelling or other body changes?

These are all important to note and bring into the conversation with your doctor.

2.  Organize, Organize, Organize

  • Bring a list of all your medications, with names (brand and generic) dosages.  Include vitamins, supplements, and herbs.
  • Bring a list of all your doctors and complementary medicine specialists as well
  • Bring a full medical history (don’t rely on your memory for what year for which surgery and the results)
  • Bring a family medical history
  • Create a list of your key questions and concerns

3. Obtain

  • DO NOT LEAVE without instructions and prescriptions for any new medications
  • DO NOT LEAVE without test slips, referral forms, and directions ( fasting, other prep)
  • DO NOT LEAVE without a nurse or other number to call if you have questions

Become an engaged, empowered patient and make the most of your doctor’s visits!

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A Patient’s Perspective on Day 2 of the FDA Public Hearing on Social Media

November 13th, 2009

Since I have great confidence in my fellow bloggers and all the fabulous Twitterati who followed today’s second day of the FDA Public Hearing on Social Media to provide detailed summaries of the day, I will take a different direction and offer my perspective as a patient on the hearing and the FDA’s  as well as pharmaceutical companies’ roles in social media.

I’ve been on branded prescription medication since I was 13 and first diagnosed with ulcerative colitis (inflammatory bowel disease), more for primary sclerosing cholangitis (autoimmune liver disease), more post-liver transplant, well you get the gist, so I have experienced my share of side effects and even a few adverse events and NOT ONCE did I think to make a report to the FDA.  NOT ONCE. Now I’m often chided for not being the average patient, but that further strengthens my argument here.  I’ve presented at NIH and not thought to report, I’ve worked with pharmaceutical companies and never thought to report, I’ve been a member of the Alliance to Strengthen FDA since it’s first year and never thought to report.

Why not? Well, my key concerns at the time were self-centered – what is going on? What is causing this? How can I make it stop?  For many of these answers I do turn to the Internet first, for context –is this normal? expected? will it resolve on its own? is there something simple I can do? —  but for resolution I ask my physician, because only in coordination with my doctor can I make the necessary adjustments or stop taking the medication. Reporting to FDA was not going to change my treatment.  It could have, in retrospect, changed treatment for others in even a more impactful way than sharing my experiences have changed treatment for fellow patients in social media and regular social environments.

Today’s hearing has impressed upon me how much we need a broadscale public relations campaign for FDA MedWatch or whatever new simplified reporting format takes its place.  (And yes, the federal appropriations, not user fees, to allow FDA to  do its many jobs.) Patient forums abound with people who not only want to help themselves, but help all patients standing with and coming behind them.  Social media and online reporting of patient experiences, good and bad, with medications can be a powerful force for improving healthcare by providing information for physicians, public health researchers, as well as regulators to access.

And Pharma – I am interested in the FDA-approved language and data (safety and efficacy)on the branded medications I take being easily accessible on the Internet and understandable.  I am not interested in pharmaceutical advertising, being approached by a pharmaceutical representative, or any overt contact of any kind.   I am happy to have them listen and correct grave misinformation if they believe that the particular forum is not sufficiently self-policing. Medication is not like shoes. I am happy to look at shoe advertising, talk to shoe people, and if the president of Zappos would like to come to my house, I’d bake him a cake.  I take medications because I need them and I’ve worked out a plan with my health care professionals of what, when, and why I will take them.  I welcome tools and information to boost my understanding, adherence, and coping, but I’d prefer if it came through a medical society or patient organization (even if pharma sponsored, I’d feel that it has been reviewed and tailored by people with interests more aligned with mine).

Bottom Line: I’m not as afraid of health social media because I believe in the intelligence, passion, persistence and generosity of my fellow patients (and I still believe in doctors). FDA has a strong role in ensuring that information by regulated entities (under their control or influence) is accurate and meaningful ( my preference over exhaustive) and that reporting mechanisms when there are negative interactions with that material or the products are well known, convenient, simple to fill out andsend.  Pharmaceutical companies and other regulated entities should listen more than talk and only interact to provide value to patients, as defined by patients.

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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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What Should A Patient Sound Like?

October 20th, 2009

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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