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Showing posts with label public health. Show all posts
Showing posts with label public health. Show all posts

"Can't" Instead of "Won't"

Posted by Alb On 6/15/2010 10:00:00 PM 1 comments

Last week I began my 8-week long pediatric externship, beginning first with pediatric infectious disease (PID) for 2 weeks. I've had the pleasure of working with Dr. H and his resident all of last week.

Today he left me with some parting words:
When a doctor or a student says, "The patient won't take his/her meds," change "won't" into "can't" in your mind. Think, "The patient can't take his/her meds."
Dr. H was of course referring to drug adherence or compliance. In general drug adherence is surprisingly low, though there is also a lot of variability. There have been studies looking at how often and how timely prescriptions are filled, and studies looking at the difference between drug adherence for "acute" illnesses (e.g. infections) and for "chronic" illnesses (e.g. hypertension, diabetes, HIV). And there have been studies looking at dosing. Unsurprisingly, taking few medications and taking them only once daily is associated with better adherence. Increase the number of medications and/or increase the dosing to twice daily or even thrice daily, and adherence drops like a rock.

We in the health field need to be cognizant of the struggles patients endure. No one is perfect, and no one should ever be expected to maintain near-perfect drug adherence. We in the health field should not assume an accusatory and antagonistic tone with patients. Let's not assume the all-too-easy tone of voice, "I see you didn't take your meds."

There are a plethora of reasons why patients are unable to adhere to drug regimens. It's not simply that they don't want to; as Dr. H states the obvious, "No one wants to die." So what gives? If you have to take 3 HIV meds twice a day approximately 12 hours apart, and you knew that if you didn't, you're risking your life, why wouldn't one adhere to that strictly? One's life certainly does depend on it.

Consider this: Mondays through Thursdays are pretty standard for most working people. Thus medications are easier to time to daily schedules. But Fridays through the weekend are a different story. If one were to go out somewhere and forgot his/her meds, one would have to return home to take the meds. It's very difficult to revolve one's life around one's medication schedule.

Furthermore, patients may simply not be ready to take their meds and/or don't know why they're taking them. Both are critical issues that must be addressed over a long period of time. At diagnosis, patients may be so overwhelmed by the disease and the implications on being on medication indefinitely that their minds are in a state of shock and disbelief. Imagine you were just diagnosed with HIV, and the person giving you the diagnosis then launches into this long talk about the different meds you have to take, when to take them, how many times a day, the importance of taking it, the disease progression, etc - all in the span of an hour or so. And then for it all to sink in that this will be for the rest of your life. Yeah . . .

There is a model of health behavior called the "transtheoretical model." It begins with "precontemplation" and progresses to "contemplation," to "preparation," to "action," and then finally to "maintenance." With precontemplation, the patient isn't even thinking of medication. Then in contemplation, the patient begins to consider the possibility of medication. With preparation, the patient readies him/herself to take medication. Action is where the patient is actively trying to remember and take the medication; and with maintenance, adherence becomes more or less routine.

It's a long process that requires a lot of counseling from the health provider. It may take months to years to progress from precontemplation to action. I believe I read somewhere that many patients don't even make it to maintenance, because it's so difficult.

So we should ask, "Why can't this patient take his/her meds?" instead of "Why won't this patient take his/her meds?" A patient may be in the precontemplation phase, a patient may be unable to afford his/her meds, a patient may not understand why he/she is taking the meds, a patient may react to an adverse side-effect, and there may be psychosocial factors at play. It is our job, our duty, to help patients work through such issues so "can't" changes to "can."

As with all things, easier said than done.

Widespread Misunderstanding of Drugs & Vaccines

Posted by YO On 3/28/2010 10:56:00 PM 1 comments
Example 1. Control of Tuberculosis (TB)

Pharmacy Student Friend: Did you hear about that multi-drug resistant type? It's so scary. We need new, better drugs, that's the problem.


Example 2. HIV Vaccine?

Given all of the structural and behavioral barriers to eradication of the HIV/AIDS epidemic, more than one of my professors who extensively research this topic voiced their hopes for an HIV vaccine entering the market some day.

.........

As much as I support biomedical research, I have come to understand that drugs and vaccines are definitely not the simple solutions that everyone thinks (wishes) they are.

For one thing, it is ABSURD to appropriate all of the government funding into drug innovations and ignore public health infrastructure, as a certain previous administration has done.


Bacteria are genetically capable of evolving at alarming rates. Every antibiotic ever introduced into the market has successfully selected for its corresponding resistant strains. The scary part is that the lag time between introduction of a new drug and the appearance of resistant strains has been getting shorter with time (1900s - present). Which means, new TB drugs alone can't save us from Multi-drug resistant strains. They will only create a period of peace until the next resistant strains show up, however soon that may be...

Viruses, on the other hand, are notorious for genetic variation. Some of the vaccines we currently use to prevent certain diseases will only protect against several, but not all, of the subtypes of pathogenic virus. Our struggles with Influenza illustrate the limits of human capability to battle viral mutation rates. HIV also has many subtypes, for which their distribution varies among geographical locations. How many vaccines would we need to develop, and how fast would those become available (long years of testing)? Would there be risks of developing disease from the vaccine itself?


What should we be doing instead?

At least for the above TB example, the answer lies in the need for better drug adherence. Chances of bacterial resistance developing to a certain drug is much lower if patients rigidly follow their drug regimens. The most effective method for this has been Direct Observed Therapy, where health workers physically watch patients as they take their drugs. There are challenges to implementing this practice widely, but it is an important investment to make if we are to keep multi-drug resistant TB out of our hair (and it may prove more rewarding than the costs involved in making new drugs).

And as for an HIV vaccine, there has been VERY limited success in that end of research. Treatment for AIDS has also hit the drug resistance obstacle many times.


Anyways, my point is that drugs and vaccines are great, but they should not be the only focus of intervention efforts.

Vaccine blurb: Varicella

Posted by YO On 2/28/2010 11:03:00 PM 2 comments

me: I heard I had chicken pox as a baby, even before I left the hospital.

friend A: That's really good, you didn't have to even suffer through it, or at least have any memories.

friend B: My mom made me play with the neighbor's kids when they got it, so that I would get it too. I mean, they used to have 'chicken pox parties' in my neighborhood, where everyone's kids would be sure to get it.


That was then, this is now. In today's America we have the Varicella vaccine on the recommended immunization schedule, so that most kids are vaccinated by the time they're in grade school, and the entire itchy experience is bypassed.

This is with good reason, because chickenpox tends to be more severe if people get it later on in life. Although, even after immunity to chickenpox develops, the virus itself is never cleared, and can manifest as shingles sometime later. I'm sure you personally know someone who's had either or both types of disease. Shingles can be extremely painful, and can cause blindness if it occurs on the face.

But fear not! I hear there now is a shingles vaccine.

Moral of the story: Some vaccines you can do perfectly fine without, but do get protected from chickenpox. Spare yourself (and people around you, as it is extremely contagious) any distress it could cause. It may seem like the disease is subsiding. That would probably be because everyone is just immune. But for the people who are not immune, it still can be a potentially deadly disease.

MOVIE!

Posted by YO On 1/26/2010 10:29:00 AM 0 comments
We had to watch this film in class today, and I must say I was thoroughly impressed. Emotionally rattled (not sure if this is the best expression). It quietly makes the tears run down your face. Plus great camerawork and otherwise a well-made film.



Basically it's a story about a woman who has to live with AIDS.
She lives the kind of life that probably is a good representation of a lot of other people in the same situation, but it is her spirit that sets her apart and blows you away.

We must be grateful for what we have and make the most out of our future...

Two Steps Forward?

Posted by Alb On 11/30/2009 07:45:00 PM 2 comments
As the health care bill is being debated in the US Senate, it's a good time for us going into/already in the health field to think about the next steps in US health care. I'd like to talk about 2 topics in this post: evidence-based medicine (EBM) and electronic medical records (EMR).
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Evidence-based medicine (EBM)

What is EBM? My personal definition of EBM is the application of science to the practice of clinical medicine. Sounds intuitive and obvious enough, and it sounds like all of medicine does/should operate this way, right? Apparently not.

To elaborate, EBM is the utilization of epidemiological studies (the study of disease patterns) and biostatistics to help physicians make more informed decisions when deciding on treatment or between two treatments, whether they be drugs, surgical intervention, or whatnot. Also, EBM allows for the ability to understand and critique the literature of medical studies in order for each physician to come to his/her own conclusions on the studies.

Arguably, a class on EBM is one of the most important courses a med student will take. It is also a class many med students loathe to take for various reasons - from their dislike of statistics, to the dry nature of the material, to the impersonal and "cold" methodology of analyzing data from many "anonymized" patients. This is perhaps best highlighted with the recent brouhaha in the news over changes in screening guidelines for breast cancer and Pap smears:


These revisions were generated in part by looking at and analyzing the current epidemiological data on those cancers. There is indeed a culture clash highlighted with these revisions - between those who dislike EBM and those who champion it. In my opinion, it would be wise to withhold final judgment on the new guidelines until one has read the study itself and decided if it's applicable to his/her practice.

Now, of course with all epidemiological studies the data is on pooling together a population (or populations) rather than focusing on a given individual. So while there is no "average patient," it's probably a good starting point. The guidelines don't apply to women with an above average risk of breast cancer or cervical cancer, i.e. a strong family history of breast cancer or testing positive for a BRCA1/2 allele variant.

Medicine is moving more and more towards EBM, as it should be. The more data we have, the more scientific knowledge we possess, the better we can develop guidelines and starting points when treating patients. But it should be noted that individuals are not a population, nor does a population represent an individual. EBM is a tool, and a very valuable one at that, but it shouldn't be the sole tool for a clinician.
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Electronic Medical Records (EMR)

There has been much excitement and distress over implementing EMR systems across hospitals in the US. Certainly EMRs have their advantages, but also less know are their current disadvantages. Suffice to say, EMR systems in the US are still nascent and may not quite ready for prime time.

The advantages of an EMR system are manifold. EMR reduces the amount of paperwork (save some trees!) which could aid in decreasing the possibility of paperwork becoming lost in the process. EMR has the advantage of being more easily organizable, such as creating tabs for "Medications," "Allergies," "Surgical History," "Family History," etc. Ultimately, EMR systems will be searchable (i.e. search for "allergy to penicillin") and more readily transferable between hospitals. So if I moved from Michigan to Wisconsin, a doctor in Wisconsin would be able to pull up my health records via EMR from Michigan once I've authorized it, rather than asking the hospital/clinic in Michigan for my health records to be faxed/sent over.

However, there are currently many obstacles to the final vision of EMR systems. My friend, Alicia, a genetic counseling student, went to their conference recently. And at their conference, there was a representative from a company that creates an EMR system. The representative painted a rather pessimistic outlook on EMRs.

One of the primary obstacles is that every hospital that uses EMRs use a different EMR system. Therefore these EMR systems aren't compatible with each other. So if a doctor in Wisconsin were to request my health records by EMR, his system has to first be compatible with the EMR system used in that hospital/clinic in Michigan. There's currently no communication between EMR systems and there appears to be little (if any) communication between the companies that design these systems - logically so, as they're competitors.

Another obstacle is the transition from paper to EMR. Someone has to either manually enter all the data into the EMR or scan the paperwork into the system. Both require considerable time and money. Paperwork can be easily buried, lost, or forgotten in the transition to EMR, potentially with devastating outcomes.

Lastly, there is some difficulty in making EMRs searchable. The cumulative medical/health data of a single individual from birth to death is enormous. EMRs would require a massive amount of storing capacity, and to design a search function that can find just what you want within that massive pile of data is currently out of reach. And a physician doesn't have the time (nor the patience probably) to look through a person's entire EMR to find that one relevant nugget of info.

So does this all mean that EMRs are doomed to fail? Not necessarily. There are obstacles, yes, but not insurmountable. If there was an incentive (perhaps from the federal government) for companies designing EMRs to communicate and collaborate, it's possible that a basic package that's compatible with all systems could be achieved. More specialized functions and widgets could be added on that need not necessarily be compatible with other EMR systems. There is also potentially a market niche in developing compatibility software that allows data from one EMR system to be accessed in another. The transition from paper to EMR is unavoidable, and it's just something that will have to take time and be toughed through (unless someone comes up with an ingenious method). And I've full confidence in the progress of technology to one day make EMRs searchable. I mean, look how far computers have advanced within the last 20 years!! But for the near future, making tabs for different clusters of data is probably the next best thing.

A nation-wide EMR system is currently a dream, and probably not something achievable within the next 20 years. But if there's a will there's a way, and being an optimist, I could see the potential and possibility of a nation-wide EMR system being in full use within the next 5-10 years. Where there's a will there's a way.
Back from Thanksgiving Break... *yawn*... everyone eat well? :)

Let me share an idea from a lecturer who came to my reproductive health class.


Think of the following as a "Wouldn't it be nice if this was carried out?" type of suggestion.
(In other words, gently ignore plausibility issues)


Problem: Regular check-ups are not as common as health care providers would hope for.
Solution: When the patients do come in for something, whatever that may be, screen/counsel for everything else while you're at it, and if appropriate connect with another facility that can treat for new diagnoses that you can't handle.
Example: Patient comes into a gynecological clinic for a pelvic examination...also check for cardiovascular conditions, diabetes, respiratory infections, etc. Provide medications, treatment, and schedule follow-up visits as necessary.



In other words, maximize on the opportunities that you can find in patients' regular care-seeking profiles. Everyone has their own individual pattern of seeking health care and screening and it may well be that they have many reasons why it's difficult to change it to better resemble state or federal guidelines.

So providers, take an all-encompassing approach. Open the door to more complete health outreach. Patients show up for a particular concern or a specific type of routine examination, providers can add other check-up procedures to that visit.



..........(contemplating barriers and limitations).........$$$

Okay, maybe I wouldn't be happy as the patient if I came in to be treated for bronchitis and ended up having to go through a multitude of other unrelated screening procedures and lengthy counseling for diseases not immediately on the horizon. But by having a conversation with my provider, risk can be assessed with prevention of disease as the goal, so I may be willing to sit through extra counseling if not extra procedures.

If this attitude became the general accepted norm (a tall hurdle), such a system may work out.

Although, surveillance for reportable diseases might get messy.



But from a public health standpoint, wouldn't that be nice if this was possible?
We'd be able to catch so many symptoms before they ballooned into serious ailments.


An idea is but an idea...until someone can pave a path for it...

Doctors as Educators

Posted by Alb On 10/29/2009 12:47:00 AM 0 comments
The word "doctor" is derived from a Latin word meaning "to teach."

Today's doctors are many things, but teaching or teacher aren't words generally associated with them (except perhaps in academic medicine). The word "doctor" invokes a particular set of images in popular culture - white coat, scrubs, stethoscopes, always doing something - but the word may not so often invoke the more unglamorous image of patient education. It's my belief that every med student and resident chooses to become their own unique "kind" of doctor, their own way of interpreting the art and the science. Thus it's my belief, and my choice, that doctors should be teachers.

During my one-year foray into public health, one of the greatest experiences of my life was teaching several discussion sections of the undergrad intro to genetics course, alongside other grad student instructors (GSIs, also called teacher's assistants or TAs elsewhere) and the professors of the course. Standing by the blackboard in front of a room of 20-30 undergrad students kept me on my toes (figuratively and literally) and oddly energized. Here I was, imparting knowledge onto students, clarifying concepts and facts, elucidating materials from lecture more in depth, intently watching for the wheels in their minds to turn. Everything I said mattered, mistakes and incorrect knowledge could backlash with great fury, so I had to be sure and confident of what I said. At the end of the day, I hoped that I had sparked that interest in someone to take the knowledge they learned from me and do something great with it.

In my opinion, medicine (particularly primary care) isn't so different. Doctors impart health knowledge onto patients, clarify misconceptions on health issues, answer questions, recommend medication and treatment plans, and hope the patients comply and carry through because they understand and trust their doctors. At the end of a visit, I would hope a patient would take the knowledge he/she learned and do something great with it - keep themselves healthy, improve their health, or even educate others. I feel many students go into medicine because it's a decisive field - you're sure (or at least act sure) of the medicine or treatment you give your patients. Truth be told, you'll never know if your patients actually take their medication or follow through with your recommendations after they leave your sight. And so proper education, communication, and trust are vital.

Already I've had a couple experiences in med school that can attest to the role of doctors as teachers. About a month ago I went to a nearby high school with another M1 med student. We were to give a presentation on obesity and diabetes to a 10th grade health class. My love of teaching instantly rushed back. At the end of the presentation there was still 5-7 minutes left before the end of the class, so we opened it up for the students to ask us any question. One student asked me, "What do you want to do after med school?" Which I initially thought was an odd question, so I answered, "Umm . . . become a doctor." He continued with something like, "Do you want to keep doing stuff like this? Coming into classrooms and teaching about health?"

That struck me. Of course I would love to go to a high school a few times a year into a health class and give a talk on some health topic. I would love that kind of community interaction as a practicing physician. I then realized how uncommon it must be for doctors to take a day or half-day off work and go into the community and do just what I did as a med student. I couldn't recall in all my years of primary education of seeing a doctor come in and give us students a health presentation. There's definitely a role, and sometimes perhaps a need, for doctors to go into the community, talk to a group of people, and educate them on some common health issue. This is certainly one role of doctors within public health.

This isn't to discount the important and integral role of the one-on-one patient-physician relationship. A couple weeks ago while volunteering as a "patient educator" at a free clinic, I saw a late middle-aged gentleman who wanted to discuss smoking cessation and depression. It was a wonderful opportunity for me to interact with patients outside of the rigid "medical interview, physical exam, diagnosis, and treatment" template. We talked rather freely as I asked him questions about what he's done, his personal and social environment, and how we can "tailor" a way to help him with these two issues that works with his life situation rather than against. I felt that to a certain degree, a more relaxed medium of communication between physicians and patients may yield better adherence to medical/health advice, as opposed to a more didactic approach commonly found in medicine. Then again, I've certainly no research to support this.

Lastly, a doctor is a life-long student and teacher. The field of medicine changes so rapidly it's mind-spinning. It can take a lot of work just to keep up and learn the newest updates, and at the same time relay this information to colleagues and patients. But it's a challenge we signed up for the moment we set foot in med school. As future doctors, I believe it's our duty to educate our patients so they may make the best and healthiest decisions for themselves.

Image from: http://www.gettyimages.com/detail/200542888-001/Photodisc

Lost in...Transitions

Posted by YO On 10/23/2009 08:17:00 PM 0 comments
In the endless quest for better technology and greater overall life expectancy, it almost feels as if the personal interaction with patients has been thrown lower and lower on providers' priority lists (in this country at least). Nowadays, the average American doctor spends less than 10 minutes actually talking to each patient. Meanwhile, the time a patient physically spends in the waiting room sometimes amounts to longer than the time it takes to roast a chicken.

Why is this important? Should we be concerned about the decline of the lifelong close relationship between a family and its chosen family doctor?

Yes, from a public health perspective, we should be concerned.

There are multiple angles from which to view this issue, but the one I'll discuss today is that of patients who are lost in the transitions going from one health care facility to another, or back home and then into the hospital again.

There are a lot of possible ways patients can get 'lost' in their health care environment. A simple example is migration. Patients who go from one state to another often find themselves in a new care facility every time they get sick. The last time I checked, the American system was still not very far in the mission to connect multiple health records of the same person. So each time patients walk into a clinic for the first time, they will have to explain themselves again. Which is not a problem if patients are knowledgeable about their own conditions, and keep good records or know their own drug regimens well. Alternatively, a lot of information can be missed.

But the health care providers often don't take it upon themselves to contact each other about particular patients, even among providers which are all separated by nothing more than a few miles. Is communication between the local STD clinic and the antenatal clinic and the district hospital necessary to care for a woman with a high-risk pregnancy? Is it the patients' responsibility to initiate such exchange of information? If so, are they aware of this??? Well, to tell you the truth......I don't know either.

Another interesting issue that I was made aware of recently is the problem of hospital re-admissions. Patients who are 1. admitted into hospitals, 2. treated, then 3. released--why is it that a large number of them (15~25% or so in Michigan) end up back in the hospital for the same condition they were supposedly treated for already?

One possible explanation (and only one of many) is that patients are not properly educated in the things they need to do when they get home from the hospital. They may be frightened from their prior event, don't understand well enough how to take care of themselves on their own, and/or are unable to promptly seek the right kind of help when they need it. Patients may find it difficult to approach health care providers with their questions (i.e. they are intimidated, don't feel rapport, don't feel like doctors and nurses mean anything they say, etc.), and often they will act like they understand the jumble of health jargon being thrown at them during visits...when in fact it's all going in one ear and out the next.

This raises some more concerns about health literacy in the general population. That's a topic I may or may not pick up in my next post...unfortunately, I don't know enough about it...yet.


Keep warm everyone!!

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Image: FreeDigitalPhotos.net

Additional reading on hospital readmissions:

Medical Genetics Education

Posted by Alb On 9/28/2009 07:45:00 PM 0 comments
It is always interesting to experience something from two sides.

In my one-year foray in grad school working towards my Master's in Public Health (Hospital & Molecular Epidemiology program), I've had the pleasure of taking courses focusing on the emergent importance of genetics in medicine and public health. Since the sequencing of the human genome there has been the scramble to identify the function and relationship of every gene in the human genome in hopes of pinpointing risks of various diseases, of developing gene therapy, and ultimately of creating "personalized medicine" where each person's treatment is tailored to his/her own genome. The field of genetics is advancing almost exponentially from year to year. Physicians and public health officials are often left in the wake as they try to keep up with the implications of new research.

In my public health courses that discussed genetics, we covered the genetic components of diseases (e.g. in cancers), the role of genetics in public health policy and ethics, how to design genetic epidemiological studies (e.g. genome-wide association studies), how to communicate genetics to the general public, and how to teach genetics to (mainly primary care) physicians and med students. For this post I will focus on the last point: teaching genetics to med students.

In some of my public health genetics courses we had discussed briefly on what to teach med students so that they are aware of the importance of genetics and so they may use that knowledge as a foundation for understanding more advanced concepts in genetics. Because genetics is an ever-changing field, what do we want med students - at a minimum - to know? How can it be taught in a way that's engaging and useful?

First, what's (more often than not) the current situation? Because med school curricula have always been packed with information, there is not a lot of time to create a new course without detracting from already existing courses. In many places, a month or less is dedicated to medical genetics. Most of the genetics one eventually encounters in med school is interspersed throughout other courses such as biochem and pathology. Entering M1 med students have very diverse backgrounds and many people have never taken any genetics beyond what little was presented in an intro biology course in undergrad.

Second, what're some of the challenges of a medical genetics course? Genetics is a complex field that interweaves between multiple disciplines, and often requires at least some basic knowledge in other disciplines such as biochem (for molecular genetics) and statistics (for population genetics). Medical genetics must also be taught in a way that's directly applicable in medicine, and much of this also requires knowledge outside of "strictly" genetics such as pathology for disease etiology and progression. Thus such a course must be basic enough that it doesn't require too much outside knowledge, but advanced enough to be actually useful.

Third, what's the purpose of a medical genetics course? This course should serve to introduce genetics to med students and give them an appreciation of its ever-increasing involvement in diseases and research. It should serve as a primer to be aware of the role of genetics in other disciplines. And finally, it should teach med students some basic utilities of genetics (e.g. pedigrees and when to suspect genetic conditions).

Let's summarize the above: 1. there is limited time to teach medical genetics, 2. genetics draws from many disciplines and must be taught in a careful and balanced way, 3. medical genetics should serve to prime and sensitize med students to the role of genetics in medicine and to make them aware of its importance. From my experience (and the experiences of some of my peers at other med schools), medical genetics is poorly taught and often used as a sort of hodge-podge "class fodder" to insert aspects of biochem and human development (embryology) to serve as introductions to those courses instead. As a result many, if not most, med students end up hating and cursing medical genetics because they can't see its utility.

So now I'll touch on the content that needs to be taught in a medical genetics course. Some of this is from discussions held in my public health courses and some of this is due to reflections from my own recent experience with the course. Some content should include:

- brief overview of mitosis and meiosis
- brief overview of replication, transcription, and translation
- brief overview of Mendelian genetics
- brief intro to non-Mendelian genetics (co-dominance, incomplete dominance, X-linked, variable expressivity, penetrance, etc)
- discussion of multifactorial genetics (e.g. additive traits, quantitative genetics)
- highlight genetic diseases to above cement concepts (e.g. sickle-cell anemia, cystic fibrosis, Huntington's corea)
- how to take a pedigree and pedigree analysis
- intro into genetic counseling and the role of genetic counselors
- intro to cancer genetics, with some basic pathology of cancer
- highlight genetic cancers to reinforce concepts (e.g. BRCA1/2 for breast cancer, FAP and HNPCC for colorectal cancer)
- brief discussion of epigenetics
- brief discussion of newborn blood screening
- brief discussion of genetics in public health (e.g. GWAS studies, linkage analysis)
- discussion of ELSI (ethical, legal, & social implication) issues in genetics and genetics research

There are likely more aspects of genetics that can be included in a medical genetics course, but the above is what I and many of my peers would have liked to see. Some topics (e.g. mitosis, meiosis, replication, transcription, and translation) were covered in more detail than necessary whereas other topics (e.g. epigenetics and cancer genetics) were briefly mentioned and some weren't even discussed (e.g. genetic counseling, multifactorial genetics, ELSI issues). The suggested content above looks daunting, but it is doable - it is possible to include most of it in a month's worth of medical genetics.

With the current state of medical genetics courses (in general) in the standard medical curricula consisting of basic science courses in the M1 & M2 years and clinical rotations in the M3 & M4 years, there is a real danger of medical education being unable to keep pace with the great strides in genetics - a fear that today's physicians will become overwhelmed with the promises and prospects of genetics, that tomorrow's physicians won't be able to properly synthesize and recognize the role of genetics in their practice.

Then again, my viewpoint might be highly biased due to my interests in genetics.

#s in Health

Posted by YO On 9/28/2009 02:19:00 PM 0 comments
Hi again!

First, I have to whine that I constantly feel that I lack knowledge. And it's absolutely true. So if you know the answer to something I don't or disagree with something I say, don't hesitate to mention it (politely, if you can :)

It'd be great to learn more and fill the holes in my understanding.

Okay. That said...

I'll admit, at the time when I entered the School of Public Health as a first-year Masters student, I had no idea that I would be taking a total of 4 biostatistics classes within 3 semesters. All I had was a vague image that epidemiology was the process of taking data (numbers!) and translating that into information that the general public can understand.

In truth, epidemiologists seem to me to be enslaved by numbers. We have to read papers dating back to the 1980's about the correct way to interpret models and numbers. Well, it is important that we understand our data properly, and don't demand more answers out of them than they are equipped to offer. So in this sense, it's good to think a lot about the figures.

Until we get to the point where the concern is too much in the numbers themselves.
Here, I'll illustrate two examples that I find interesting. I know there are many more out there!


--Cutoff points.

Cutoff points for p values (if you don't know what I'm talking about, feel free to comment as such) are hilariously arbitrary, in my opinion.

Cutoff values in clinical use--such as BMI cutoffs for who is 'obese' versus 'morbidly obese' or Hemoglobin counts > 13.5 being 'eligible to donate whole blood'--seem to be more thoroughly thought out and disputed in most cases...?


--Goals.

This is something that came up in my Global Health class last week. Those periodical ___ (fill in with the name of a health initiative of choice) Conferences like to set goals for how much work they want to get done before their next meeting. The funny thing is, some of those organizations get too caught up in the numbers and suggest crazy things to achieve them.

I think one example (I apologize for not remembering the exact organization, notes are somewhere else right now...UN?) was about HIV/AIDS goals.

The idea was that the participating countries wanted to get their AIDS prevalence lowered to a certain number. Sound normal enough?

But considering that AIDS is a life-long condition that can't go away, its prevalence in a population will inevitably keep increasing as long as the incidence of new cases never hits zero.

So someone suggested that they stop providing antiretroviral therapy (a.k.a. let the cases die off), otherwise the goals won't be reached. Plus that would be better economics.

......ETHICS, anyone?

I'd like to believe that our job as health care providers is to help all people live, and let them enjoy good quality of life while they're at it, rather than strive blindly for numeric goals set by higher-level policy......but that's just me.

The Ideal...and the Next Best Option

Posted by YO On 8/31/2009 12:01:00 AM 0 comments
Hello everyone, welcome and thanks for reading!

In my first post, I'd like to introduce a point that I've discovered during my internship experience, something that I've learned from my supervisor there. As I am still in the process of earning my Masters degree, there is much left for me to learn about health care. I have no conclusive opinion yet to offer on this topic, so that's why I say I am only bringing this to your attention. Actually, some students who already went through an internship praticum might agree with me already.

With that said...

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The practice of public health often does not mirror the public health theory we are exposed to in academic settings.

Especially at well-endowed universities, we the students are trained in our courses to strive for optimal care for our patients. We aren't aware of it when we are being schooled, but we are shielded from the real world by the luxuries in our home institutions. It is my opinion that the rift between academic health research and health delivered in practice is here, in the discrepancy between the "Ideal" and the "Next Best Option."


Studies must always be planned out thoroughly. Before we even propose the study, we must read all of the literature already present on the topic and make sure, through and through, that this will be a promising study. We must get a massive sample, and leave little room for error. A difficult situation, an unexpected problem that is out of your area of expertise--no problem, contact a specialist, hire a biostatician, call your lifeline.

It's a common exercise in my public health classes to create hypothetical research studies or intervention programs. Although we are presented with challenges, many times we brush them off by using the excuse "this is just a hypothetical study." In this hypothetical setting, we have lots of money and time and all the resources we need, so why should we bother thinking further?

Now, graduate and you've got the degree. Come the real world, and this is what you might really see....

Shortages in supplies (such as ink for the fax machine) that seem most trivial at first, but end up halting the entire process. Workers retiring/getting laid off, nurses taking week-long vacations at all the wrong timings. Deadlines for grant applications that leave no time for you to consult the previous literature. Software that won't stop crashing on you. And will you ever, ever have enough money?


When I worked at my summer internship at a correctional facility, I realized that we were constrained like this (I won't go into excruciating detail). Jail inmates are a unique population in every sense. The most important limitation on our screening and treatment programs was that many inmates didn't stay in our facility long enough for us to give them treatment. Infected patients were released back into society, free to spread whatever they might have been carrying. All it took was maybe a little delay in getting laboratory test results back because of lazy workers forgetting to fax us the paperwork. Just like that, we'd lose the opportunity to treat several sick patients. Not to mention, if we conducted research evaluations, the sample size was never ideal, there were human mistakes and data were often incomplete (we lost entire sets of answers to certain questions because someone copied the survey questionnaires and didn't notice the bottom was cut off!).

Ideally, we'd screen everyone for every reportable disease and treat all the positives properly. But taxpayers' money just didn't give us enough resource to do so. And that is only one of a million other limits we faced. I imagine this tight situation does not apply only to the place I worked in. The economy, the special population, the political situation...whatever the reason, health care workers everywhere on the planet must be facing such difficult decisions as to "What is the Next Best Option available to us for our patients and the public?"


We need to learn to be opportunistic, flexible, and resourceful. The main point of my account here is that we must be ready. Not only for crises, but for little holes in our planning that can cause the whole boat to sink.

And so, from this point forward, I intend to learn how to really think when I practice public health.

Prophylactic Interventions On Children

Posted by Alb On 8/27/2009 10:42:00 PM 0 comments
So I'm going to initiate this by writing the first post. A couple months ago I came across an intriguing article* that discusses the intersection between pediatrics, public health, and human rights. It mentions some great and valid points, but I'm not too sure I agree with them on every point.

The article essentially asks what are the criteria to allow prophylactic interventions to be done on children, "in their best interest" and/or for public health reasons. Children can be considered a "special population" in that they have little/no voice for themselves and are thus very vulnerable. Parents provide proxy consent until they reach the age of majority (teen years) but does that mean parents and health care workers should have near-complete power over their health decisions until then? Four cases are examined and they can be broken down broadly into routine immunization and prophylactic and/or cosmetic surgery. I will not discuss the criteria but I would like to point out the essential difference between routine immunization and prophylactic/cosmetic surgery in infants and young children.
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Routine immunization protects individuals from contracting highly communicable diseases. In addition, routine immunization helps to protect the public from these highly communicable diseases by limiting their spread through "herd immunity." In ideal cases the pathogen may be eradicated through routine immunization, as in the example of smallpox.

Broadly speaking, routine immunization is most often done in infants and young children, as they are most at risk for these communicable diseases and they are also most likely to suffer severe complications from these diseases. Routine immunization is minimally invasive and the key point is: the child is given something - immunity - and nothing is taken away. Overall there is a net gain with routine immunization in general. However, the rare but serious side effects that can occur as a result of immunization cannot be discounted. The more complex question is, what about immunizations for diseases that either have a low morbidity/mortality or are not so highly communicable? Examples such as chickenpox, Hepatitis B, and HPV vaccinations come to mind.

With chickenpox, the disease is rarely serious in children and mostly just an annoyance. But in adults who did not get chickenpox (or only got a very mild case of it) as children, they are at risk for developing shingles from the pathogen that causes chickenpox in children; shingles can easily be very serious and life-threatening. With chickenpox there is this gray zone. It can be argued that the chickenpox vaccine is unnecessary in children, but if a child reaches adulthood and never caught chickenpox, then he/she should be vaccinated as an adult. And by this time the person can give his/her consent.

Hepatitis B (HBV) is often transmitted via blood or sexual contact. As such most people are generally at very low risk of contacting HBV provided they practice safe sex as an adult (something everyone should do anyway) and children are at almost zero risk for contracting HBV. Certain populations - such as intravenous drug users and prostitutes - are at high risk for contracting HBV. There is also a particular risk to health care workers due to possibility of needle sticks with HBV-infected blood. The question is then, why give children routine immunization against HBV when it's possible to wait until their teen years when they can give consent themselves?

HPV, the virus that causes genital warts, cervical cancer in women, implicated in penile cancer in men (though this cancer is exceedingly rare anyhow), and implicated in anal cancer in both genders, is transmitted through sexual contact only. Currently a 3-dose vaccination is given to girls between 11- and 13-years-old, generally before (hopefully) these girls become sexually active. This vaccination is curious because it borders on the age when these girls can give their own consent independent of the parental proxy consent. This presents its own unique ethical issues.

Gray areas aside, there is general agreement that routine immunization overall is a good idea. There may be a few vaccines here and there that potentially present ethical dilemmas, but for the rest there is really not much to argue. A more critical appraisal of routine immunization may be examined in a later post.
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In contrast to routine immunization, prophylactic/cosmetic surgery in children, particularly infants, are far more controversial. The idea of prophylactic surgery is to remove tissue in the hopes of preventing or at least reducing the risk of a particular disease(s). With cosmetic surgery (separate from reconstructive surgery due to a malformation like cleft palate), it is done to help a child "fit in" or for some other reason given by the parent(s). The article presents strong arguments against any prophylactic or cosmetic surgeries in infants or young children.

An example of a highly controversial prophylactic surgery is neonatal mastectomy (removal of the breast tissue) for girls with a strong family history of breast cancer and may have tested positive for a BRCA1/2 gene mutation (though such genetic testing in children presents ethical issues of its own). Note: neonatal mastectomy is not standard or common practice, and I have no knowledge of it actually being performed anywhere in medicine. About 1 in 8 (12.6%) US women get breast cancer each year. For women who test positive for a BRCA1/2 gene mutation, their personal risk jumps to approximately between 50% and 80% chance of developing breast cancer. Prophylactic mastectomy greatly reduces the possibility of developing breast cancer (as you can't get cancer of something you no longer have). If these women were identified to carry a BRCA1/2 cancer-causing gene mutation as infants, would it be ethical to prophylactically remove their breast tissue as infants?

In general the resounding answer is: NO. Any surgery - however major or minor - has attendant risks and complications (direct or indirect). Furthermore, any surgery has the possibility of maiming or mutilating the individual. While (prophylactic) surgery may prevent or reduce one's risk of a given disease(s), there are almost always more conservative routes of prevention. If it is not immediately medically necessary, there should be no reason to remove/alter any part of the body - especially in individuals who cannot give their expressed consent. It can be argued that parental proxy consent is "not strong enough" to override the rights of the child to his/her bodily integrity, even if the parents believe the surgery to be done "in the best interest" of the child.

Cosmetic surgery is (should be) less acceptable by any medical or public health criteria. There is often (if not always) no health benefit to the individual. An example the article gives is cosmetic ear surgery to correct "bat ears" in children. One cannot say that the surgery will go well (even if it has a very high success rate and/or low complication rate), one cannot defininitively determine the future development of the child, and one cannot predict the emotional state of the child. While surgical correction of "bat ears" sounds ludicrous to many individuals, it is of genuine concern to some parents to make sure their child has "normal" ears to fit in.

In contrast to routine immunization, prophylactic/cosmetic surgery should not even be considered in infants and young children except in cases of immediate medical necessity. Unlike a vaccination, something must be removed in hopes of providing a net benefit that may never be realized - there is initially a net loss before a net gain (if any) can be attained; and unlike a vaccination, all surgeries are invasive. Furthermore, there are almost always more conservative routes of prevention until the individual reaches the age of majority and can give his/her own consent. As the US Centers for Disease Control (CDC) and the American Academy of Pediatrics (AAP) revise some of their guidelines at the end of this year, it would be wise for them to remember that prophylactic/cosmetic surgery in children is never a good idea and should not be endorsed.
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* Article:
Hodges, F.M.; Svoboda, J.S.; Van Howe, R.S. (2002) Prophylactic interventions on children: balancing human rights with public health. Journal of Medical Ethics. 28, 10-16.