Archive for the ‘Doctor-Patient Interactions’ category

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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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 Perspective on Medication Compliance (Part 2)

September 9th, 2009

Part 1 of this entry on medication compliance explored the disconnect between physicians and patients and the costs in both health outcomes and health economics on non-compliance.

So what are an army of pharmaceutical, medical and communication professionals to do when faced with a non-compliant patient?

1.  Think of the patient as a person not a condition

A patient had a life before entering the doctor’s office and will have a life afterwards that includes but may not be defined by the particular condition that led them to seek care.  As much as patient communications can honor and encompass a patient’s values, cultures, and life circumstances the more successful they will be.

¨      Will the patient’s family need to be involved in the decision to begin or continue a therapy?

¨      Does the method of administration embarrass the patient?

¨      Is there an alternative medication when taking another would, if taken as prescribed (with food for example), violate a patient’s religious beliefs (during a period of fasting)?

2.  Educate the patient to make their own decision

If patient fully comprehends the implications of the disease or condition for their lives, including the risks and benefits of various options for treatment and nontreatment they can perform the personal calculus necessary to choose and value treatment.

¨      What is the timeframe for making a decision?  Are there consequences for waiting?

¨      Would medication now avert surgery or other complications later?

¨      Did the medical research include patients just like me?

3. Provide tools/approaches for success

Even a patient fully convinced and committed to a treatment plan can fail if they cannot overcome an obstacle course of barriers such as cost, health literacy, and the vicissitudes of life.

¨      Does the patient’s insurance cover the medication prescribed? Can they afford the co-pay?  Do they have a ride to the pharmacy?

¨      Is the complicated treatment regimen written in plain language?  Once is one time to an English speaker, 11 times to a Spanish speaker.

¨      Would a multi-compartment pill box or alarm watch help the patient remember?

¨      Would a call from a member of the medical team a week after the visit make the patient feel both more supported and more accountable?

Considering patients not as passive recipients of medications but as full partners in developing, describing, and delivering health solutions can result in healthier companies and medical practices as well as patients.

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A Patient’s Principles for Healthcare Reform

September 7th, 2009

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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A Patient’s Perspective on Medication Compliance (Part 1)

September 7th, 2009

As the costs to the pharmaceutical industry and to the economy from patients not taking their medications as prescribed escalate into the billions and physician reimbursement is increasingly shifted to a “pay for performance” model where they are judged by outcomes as well as interventions, interest in understanding why patients do and do not comply with medication or other therapy recommendations increases.

Surveys of physicians consistently report a top complaint that patients refuse to take their medications as directed. Surveys of patients just as consistently state patients’ views that they are fully compliant with their medication therapeutic regimen. Somewhere in between lies the truth.

First, there’s the term compliance. Compliance, as defined by the Random House Unabridged Dictionary, is the act of conforming, acquiescing, or yielding. A person does not trade her free will for blind obedience when she trades her clothes for a paper gown. In this age of personalized medicine patients demand and deserve a personalized plan on taking that medication to which they are empowered and inspired to adhere.

Second, when a physician asks if a patient has taken her medicine that seems like a yes or no question. In fact, the patient is being asked, “Did you fill the prescription in a timely manner? Did you take the right dose at the right time in the right way every time (with food without food with a full glass of water on an empty stomach without lying back down for 30 minutes)? Did you take all the medicine (even after you felt better)? And did you refill the prescription as soon as you finished the first?” A patient may answer yes if they have fulfilled even one of these criteria.

What would drive a patient, even if diagnosed with diabetes, heart disease, or another serious, life-compromising condition, to not follow “doctor’s orders”?

  • Didn’t like being ordered around by the doctor
  • Medication tastes bad Side effects too much to bear
  • Method of administration painful or unpleasant
  • Taking the medication reminds the patient of her mortality
  • Doesn’t believe the condition is that serious
  • Treatment interferes with lifestyle
  • Forgot

(To be continued in Part II)

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