Monday, August 11, 2008

Who owns your medical history?

You may think that you own your medical history, but you may be mistaken. New trends in the medical field are changing the way patients medical records are stored and used. This promises to help millions of people each year and improve patient safety, but make sure you know who really owns your health history.

Hospitals and medical care providers are moving away from paper documents to keep patients records and are moving towards electronic records. Electronic medical records (EMRs), also known as electronic health records (EHRs), will allow for faster and more efficient transfers of patient data from the doctor to the pharmacy and to the health insurance company.

This move from paper to electronic has obvious advantages for the hospitals. The storage and retrieval of patient information is much cheaper and faster. The move will help many patients, too. In particular, the electronic transfer of prescriptions from the doctor’s office to the pharmacy promises to dramatically reduce the number of prescribing errors that occur due to misread doctors’ instructions.

We all know and have seen the chicken scratch abbreviated instructions that doctors often write on paper prescriptions. Errors in prescribing and taking medications pose a very serious problem. A 2006 report by the Institute of Medicine estimated that 1.5 million people are injured each year by medical errors including deaths. The cost of these errors is in the billions of dollars each year. Having electronic medical records will help alleviate the problems of misreading hand-written prescriptions. In addition, patient safety can be increased further if the electronic prescribing system can be linked to drug safety databases and personal medical records that could automatically check for a drug’s side effects and potential problems with a patient’s known allergies or other medications they may be taking. All these benefits have created a strong impetus to increase the use of electronic medical record systems. In fact, President Bush stated that he wanted every American to have an electronic medical record by the year 2014.

Electronic medical records are a wonderful advance for handling patients’ medical records, but do have some concerns. One problem is that they are only as good as the person entering in the information, so having a quality control system in place is important. Another large concern is the issue of confidentiality. Knowing who is looking at these electronic medical records can be problematic for patients.

Health and life insurance companies are starting to use these records to access the medical risks that an applicant poses. This in itself makes a lot of business sense, but other companies are in the business of selling medical records. Patient medical information is being packaged and sold to third party companies, such as insurance companies and other interested parties. In fact, if you aren’t careful, your medical information could be sold without your knowledge.

There are government rules for how electronic medical records can be used. The Health Insurance Portability and Accountability Act (HIPAA, pronounced “hip-ah”) sets rules and standards for how electronic medical records can be shared. It contains a Privacy Rule that instructs companies holding your electronic medical records to inform a customer about their policies for sharing electronic medical records. When you sign up for insurance or a health care plan, you should be presented with the company’s policies for sharing information. You may choose not to accept their policy, but your failure to consent could prevent you from getting approved. When signing these forms, pay attention to what their policies are.

For companies that sell medical records, the HIPAA rules require that they protect a patient’s identity. If you feel that your information has been misused, HIPAA protects your right to receive a report on who your information was shared with. If you think it has been improperly shared, you can file a complaint with your provider or insurer, or with the US government if you feel that your concerns are not being addressed.

The move to electronic medical records will save many lives and improve healthcare, but consumers need to pay attention to how their health information is shared, just as they would their financial information.

Saturday, August 9, 2008

Public Transportation and Organ Transplantation: How are these related?

One of my favorite podcasts is EconTalk (http://www.econtalk.org/), a fantastic listen for anyone interested in how our daily lives are affected by economics and reward incentives. Each episode is about an hour long and covers a wide range of topics. I love the show and have wanted to spread the word about it, but most of the economics topics haven’t fit with my podcast’s focus on the medical field and pharmaceutical industry. However, a recent episode entitled
Munger on the Political Economy of Public Transportation had a very interesting segment that I’d like to speak about. Now, I know the episode title says “public transportation”, and this in itself was a very interesting discussion, but the part of the episode that really grabbed my attention was about organ donation and transplantation. (That’s quite a teaser, huh? You’ll have to listen to the podcast to see how in the world a discussion on public transportation in Chile could lead to the topic of organ donation).

I understand that the topic of organ donation may be uncomfortable for a lot of people. Because the types of tissues and organs that a person can donate while they are alive is limited (e.g., a kidney), the issue of organ donation usually deals with the unfortunate death of a person, in this case it's you, the donor. That's not to mention that some people are simply squeamish when it comes to thinking about surgical procedures and internal body parts. However, the topic is too important to put aside simply because it makes us uncomfortable to acknowledge our mortality. So with that, I hope you'll consider the topic for discussion.

The idea being discussed on the EconTalk podcast I mention above centered on the question of why not have organ donation be privatized and the organ donor’s family be financially rewarded for the organ donation of their lost loved one. I found the idea very intriguing and wanted to comment on it. Currently, organ donation continually suffers from high demand for organs but limited supply. There simply are not enough people donating their organs and tissues to help all the patients who need them. If you need an organ today, you are put on a waiting list and must hope that an organ will become available for you from another person ,who unfortunately is likely now deceased but was very kind enough to voluntarily consent to donate. If you are on the waiting list, you may be ranked according to your need and your probability that a new organ will help you. Younger people may be seen to benefit more than older people based on expected remaining life spans. More gravely ill people may get higher priority than less ill people, because the less ill people likely have more time to wait for another organ to become available. Someone who needs a transplant but is otherwise healthy may get higher priority than someone who needs the same transplant but also has other medical problems that can limit their survival.

Many people in need of transplants will likely die while on the waiting list. OrganDonor.Gov is a US government agency website providing Organ and Tissue donation and transplantation information. As their website shows, the problem is quite significant:

Organ/Tissue Transplant waiting list candidates (as of 7/28/2008): 99,363
Transplants performed January – April 2008 (as of 7/25/2008): 9,029
Donors January – April 2008 (as of 7/25/2008): 4,578

In the US, there is a federal law (the National Organ Transplant Act) that places limitations on organ and tissue donation. However, the practice is primarily state regulated. By the rules, an organ donor must agree to be an organ donor while they are alive. This consent is often displayed on the person’s driver’s license. However, the current scarcity of organs and tissues for donation suggest that this dependency on volunteerism solely for humanitarian reasons is not sufficient. In fact, even if you volunteer to donate, your family may overrule your donation consent if your wishes were not clearly communicated. So is there a better way to get people to donate?

Surely, we should continue and even increase public service announcements and appeals for people to be aware of the problem and be willing to donate their organs. However, organ donation is likely never to be high on the list of things a healthy person wants to think about while they go about their daily living.. Also, with organ donation being a charitable gift, there are not many financial resources available to mount a large media campaign. The government does what it can to get the word out and I commend the government for using public services like the Department of Motor Vehicles offices to raise awareness of the issue when people obtain or renew their driver's licenses. Like any charitable gift situation, when the topic of the need for organ donation is presented, many people understand the reason for giving and care about the problem trying to be solved. However, there is typically no call to action to motivate a healthy person to consent to a donation.

So how can we increase the supply of organs and tissues for the patients who need them?
Stem cell research is being touted as a way to help alleviate the scarce supply. Stem cells are cells that have not fully developed (differentiated) into the types of cells most people are familiar with (e.g., skin, muscle, nerve) but have the potential to do so under the right conditions. We all have stem cells in our body. The hope is that scientists can learn how to create these right conditions to be able to control stem cell development. In an ideal situation, stem cells could be 1) obtained from a patient in need of an organ or tissue, 2) developed in a laboratory to form the organ/tissue needed, and 3) given back to the patient to fix the problem they are suffering from. As we all know, stem cell research is currently a highly controversial political and social issue that is putting limits on the research. However, even if the public and government were to fully agree to use stem cells, the problem of organ/tissue scarcity will not quickly go away. Scientists are working hard to understand how to control the development of stem cells into cell types that can be of medical value (e.g. muscle, neural, skin), but the ability to create complex organs like a kidney or heart in a laboratory is not going to happen any time soon.

What about using animal organs and tissues?
Animal organs are a potential source and have been used for some transplantations (usually from pigs). This transplantation, from animal to human, is called xenotransplantation. Again though, this has all kinds of problems. Like stem cell research, xenotranplantations have all types of moral and ethical dilemmas and does not sit well with many animal rights activists. Also, the medical risks and limitations of xenotransplantation are significant. Many animal organs are not physically compatible with humans and transplant rejection would be, and is, a serious concern. Also, the types of organs and tissues that could be used from an animal are limited.

So can we improve the human donation situation we have now by financially rewarding people for donating?
The idea of paying for organs likely raises a lot of eyebrows. Financial incentives and the desperation of dying patients needing transplants have already created a black market for organs in some countries. Patients may travel to a country and pay for an organ to be donated. These "transplant tourists" must be wealthy enough to pay for the service and therefore limits the service to the relatively rich. In contrast, the countries and donors that supply the organs are often relatively poor. This financial inequity may not only be distasteful because of exploitation of the poor, but can have tremendous health risks when the transplantation is done in places without adequate modern medical and safety equipment and training.

But what if we were to legalize and regulate the financial trade of organ donation? What if rather than asking people to volunteer to donate, you gave them a monetary incentive to do so?
Without a doubt, people would be much more motivated to donate. In fact, organ donation consent could be included as part of their insurance, will, and other estate planning. A person could sign a contract with a private company, such as their insurance agency, that upon their death, if their organs are healthy, they could be donated to needy patients in return for monetary compensation paid to their designated benefactor. This legal contract would help alleviate the financial burden on the deceased's family and loved ones while providing a life-saving resource to others in need.

Such a financial incentive system for legalized organ trade would have to be carefully considered before implementing to ensure adequate safeguards for all parties involved.
- There would need to be safeguards to ensure that the donor does not become seen as a commodity to the corporation. The monetary value of the donor's organs and tissues should not be considered to outweigh any efforts to save their life in a time of crisis.
- Safeguards against donor fraud would need to be created to make sure that a donor and the donor's family do not fail to disclose medical problems that the donor has for fear that their compensation would be jeopardized. This is one reason that I think the donor's insurance agency may be the most appropriate holder of the contract since they are in the best situation to monitor and evaluate the donor's medical history and status at the time of death.

So as you can see, I think this is a very interesting and important issue filled with ethical, moral, medical, and financial issues for debate. I find the idea very interesting and would love to hear any comments you may have. Also, I encourage you to listen to this and other great topics discussed on EconTalk. I have no ties with it other than simply being a big fan of the show. I thank them once again for another thought provoking topic, especially one so close to my main interests.

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