A Unique Patient Identifier could be Beneficial, But At What Price?

Linda was in constant pain so she went to the hospital emergency room where she was diagnosed with a severe stomach virus. After two weeks the pain got worse so she went to a clinic where she saw a gastroenterologist who ordered a CT scan which showed a large mass on her pancreas. Linda had a biopsy and was diagnosed with acute pancreatitis, given medication, and instructed to follow up in six months. The results of this incident were recorded in an electronic record. Six months later, Linda had changed jobs and relocated to another State. She tried to access her record, but discovered that the clinic had merged with a large hospital and they could not find the record. Her new doctors were unable to compare her current CT scan with the initial test, thus compromising their ability to give her the best follow-up care.

There is much talk about the benefits of electronic health records enabling doctors to have full information on a patient at the point of care. However, considering the mobility of the American population, there is a missing link, the absence of a unique patient identifier for every individual that enables the healthcare provider to look up data on that patient whenever and wherever they seek care. By their very nature, electronic records demand that individuals be uniquely identified if the processes of enrollment and authentication are done right.

Rand Research in 2008 conducted a study that concluded that a unique patient identification number system is necessary to reduce medical errors, protect privacy and simplify the use of electronic records. The idea is that associating data such as a sequence of numbers and letters with a particular human enables authentication of the individual and their health information that is resident in digital format. Current systems that match individuals with their information using attributes such as name, birth date, address, zip code, gender, medical record numbers, and all or part of the social security number are not as efficient since some of these factors such as name or address/zip code can change over time.

Unique Patient Identification is not a new idea. In 1996 HIPAA legislation included a provision that asked that the Department of Health and Human Services issue unique patient ID numbers for all Americans’ medical information. The United States Congress reversed that provision after privacy advocates protested that such a system would violate the individual’s privacy protections and bring too much government interference into the health care system. With a massive database of over 300 million individuals with individual patient identifications, privacy issues loom large. Furthermore the Rand Study estimates that building that database could cost as much as $11 billion.


In the United Kingdom and in other European countries national identity smart cards have been tried with some level of success. It would be highly beneficial to individuals and the American healthcare system that an electronic record that includes an individual’s comprehensive health information could be accessed with a unique 9 or 10 digit ID. This is a task for Mr. Daschle’s Federal Health Board to consider as the new administration establishes its short and long term objectives.

Personalized Medicine, the Next Frontier

When an individual patient visits his or her doctor with a problem, traditional clinical diagnosis is made and treatment is administered based on the patient’s symptoms, medical and family history and results of lab tests.

In the e-health world of the 21st century, personalized medicine, a new approach to treatment and analysis of patients’ health issues, promises to revolutionize that process. Personalized medicine looks not only at an individual’s symptoms, labs and medical history but at the individual’s unique clinical genetic and genomic markers to determine a treatment program. Because these factors differ for each human being, the disease they carry and how they will respond to treatment will differ as well. Taking this to another level, personalized medicine enables doctors to make accurate predictions and assumptions not only about an existing condition but to make predictions about a person’s potential to develop a disease. This will enable clinicians to treat patients proactively rather than reactively resulting in a better outcome.

Personalized medicine is gathering momentum as evidenced by the significant attendance and enthusiastic involvement of the participants at the recent conference sponsored by Harvard Medical School and the Center for Genetics and Genomics at Partners Healthcare. Although there was general agreement that personalized medicine is now an accepted way to look at the patient, there are also enormous barriers to its widespread use, including:

1. Economic factors such as who will receive and who will pay for genetic testing.

2. Issues regarding who will be responsible for building the infrastructure needed to support widespread deployment,

3. Concerns about how we amass, use, and protect the vast knowledge base that results from genetic tests.

4. Legal questions regarding who owns the genetic test data - the patient, the physician, the institution - and whether or not that information can be used for additional research.

5. Unresolved issues regarding standards upon which to build a platform for using personalized medicine

6. Discussions about how to structure collaborations amongst all the stakeholders (patients, physicians and scientists) so that personalized medicine advances are translated ultimately into better patient care.

E-patients must be part of the conversation that determines where we are going with personalized medicine because personalized medicine uses genomics to focus not only on disease identification tied to a specific combination of genes in an individual, but also on disease prevention and wellness in which everyone has a high stake.

Dealing with Guilt, Isolation and Fear when Adverse Medical Events Happen

I recently attended a forum entitled Medical Error: The Power of Apology, Action and Forgiveness. Paul Levy, CEO of the Beth Israel Deaconess Medical Center in Boston (BIDMC) led off the program with a discussion of his initiative to make public all occurrences of preventable medical events at the BIDMC. Levy pointed out that hospitals are the fourth ranked health hazard in the nation! He recommended a “laser-like” focus on quality that engages all stakeholders in healthcare that might help ameliorate this outrageous statistic. www.runningahospital.blogspot.com

Dr. Tom DelBanco, M.D., Professor of General Medicine and Primary Care, at Harvard Medical School was the lead speaker at this forum. For over 30 years Dr. DelBanco was Chief of the Division of General Medicine and Primary Care at the BIDMC. He is also a founding Chair of the Picker Institutes in the USA and Europe, an organization that documents patient experiences with care and works with patients to improve health services.

Dr. DelBanco reminded us that patients or care givers advocating for patients who have been injured in the health care system often suffer guilt, fear and isolation when an adverse event occurs. These emotions are equally shared by the doctors and nurses who have been involved in medical errors. Dr, DelBanco pointed out that disclosure and communication could effectively help resolve the emotions that surface after these occurrences. His talk was followed by two patient presentations whose horrific experiences with medical errors were a powerful reminder of how things can go wrong without intent or provocation and how those wrongs could have been made tolerable if the doctors had admitted their error, showed compassion and maintained communication with their patient.

As an individual whose career has been devoted to understanding communication, teaching communication skills and using communication tools, I see a unique opportunity for healthcare institutions to attack the syndrome of emotions resulting from an adverse medical event by: (1) implementing high standards-based quality measures that help to insure that everything humanly possible is in place to avoid these medical errors and (2) providing training to healthcare professionals in the elements of communication. In times of stress, when guilt, isolation and fear overtake the individual who realizes that a mistake has been made, the tendency is to avoid all contact with the problem.

In the digital era we run the additional risk of increasing the communication gap between patients and doctors as one-on-one interactions are replaced with virtual interactions. Open communication will not come about by itself. A deliberate and thoughtful plan is needed to help healthcare staff learn how to explain these situations and talk through these issues with patients. Encouraging those difficult conversations will go a long way in making everyone feel better about themselves and the situation.

The Case of the Disappearing PCP

Patients who reside in Massachusetts, the first state in the United States to legislate universal coverage for all residents, often wait months to get an appointment with a primary care physician (PCP). Massachusetts, along with almost every other state is suffering from a “severe” shortage of family physicians and internists. According to a report issued by the American Academy of Family Physicians http://www.aafp.org/ and the National Association of Community Health Centers http://www.nachc.org/ almost 20 percent of Americans, 56 million people who are insured, have inadequate or no access to primary care physicians because there is a shortage of providers.

Recent data from Medical Schools show that only two percent of graduating students are electing to pursue careers in family practice and internal medicine, a decline of 52 percent over the past seven years. The cause of this seismic shift in career choice is money. Reimbursement rates for primary care have declined; student loan rates have skyrocketed and the complexity of caring for an aging population and chronically ill patients has become more challenging, especially when there is no pot of gold at the end of the rainbow.

The healthcare reimbursement system rewards doctors for procedures, not for diagnoses. A specialist who performs a procedure in a 30-minute visit is paid three times more than a primary care specialist who spends that same 30 minutes discussing and working through a patient’s issues. As a result primary care physicians must squeeze in three patients in 30 minutes just to stay even with specialists.

At a time when primary care is most needed just to service the first wave of the 76 million baby boomers in the United States, who become eligible for Medicare, there are fewer providers. Patients older than 85 who have chronic conditions requiring close supervision will rise by 50% in this decade alone. And there are always new young families looking for family physicians, who are in short supply.

Meanwhile Title VII funding, one of the only outside sources of funding to stimulate medical education, residency education, faculty and academic development in primary care was slashed by 54% in 2006 from $88.8 million for FY 2005 to $41 million for FY 2006. There is a resolution that would restore Title VII funding in the FY2008 budget, however, the impact of the 2006 budget cuts will be felt for some time.

There is no question that the primary care physician/gatekeeper plays a critical role in 21st century healthcare where patient issues are complex and most patients require consults with specialists and numerous tests that must be monitored and managed. Solving the shortage of PCPs is critical. There are alternatives to the PCP handling everything such as the use of nurse practitioners in the physician office to offload some of the standard cases, and the proliferation of walk in clinics both in hospitals and in retail establishments that see less serious patients and are open evenings and weekends. However, the expertise and interaction between primary care physicians and the patient population cannot be replaced and must be preserved. That will only happen if the healthcare system finds better ways to incent doctors to remain in primary care. The healthcare infrastructure including hospitals, insurers and medical schools must collaborate to make primary care a more attractive career path by working on better financial packages for aspiring physicians and more attractive compensation models for working physicians.