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:

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

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

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

· 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.

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

· 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.

I was recently hospitalized. Fortunately I did not have to go through the emergency department but was admitted directly to a room. When I arrived, the nurse assigned to my case sat down with me to go over my medical history and medications. Much to her surprise I provided her with my personal health record (PHR) that I had created several months earlier on the iHealth Record web site www.ihealthrecord.org. My PHR included information on the illnesses I had contracted; my family medical history, medical proxy, and most important my medications and allergies to medications and food. With this information, the nurse was able to complete our interview quickly and efficiently, confident that the information was accurate and up to date. She let me know that she had not run into a patient with a PHR before and that she was clearly impressed.

I was at Massachusetts General Hospital, an institution that had my electronic medical record digitally stored in the computer, so much of this data was available. However, I see many different providers who are both within and outside the hospital network so portions of my medical history were not in the hospital EMR. Furthermore, had I been admitted to a hospital that did not have my medical record, there would have been no way of knowing anything about my health history without this PHR. It is scary to contemplate having to recall all of my medical information at a time when I am ill and not at my best.

Much is being written and discussed about personal health records particularly as Microsoft Health Vault, Google Health and Dossia roll out their PHR platforms. Shortly after Google Health was unveiled more than two dozen companies announced that they would become partners with Google to create PHRs for their employees. Microsoft HealthVault, Dossia and Web MD have experienced similar enthusiastic response from industry and healthcare institutions.

At the recent Connected for Health Symposium in Boston, MA, representatives from each of those organizations spoke about their PHR strategy. Each of them has aligned with large employers, and/ or with payers and/or with provider organizations to offer PHRs that will support individuals dealing with chronic disease; that will provide data for analysis, that stores information entered by individuals, payers and providers securely and can be retrieved by providers when and where they need to access that information.

We know that fewer than one in five doctors are using an electronic health record in their practice because the logistics of installing, implementing and training staff to use these records is a task of great magnitude and one that most doctors who are not affiliated with large institutions do not have the time or resources to accomplish. With employers solidly behind the concept of each of their employees having a personal health record, the patient-owned PHR has the potential to fill a gap in information needed at the point of care by empowering consumers to create their own record, in a secure environment, that contains all of the health information that patient’s have about themselves. This data can be merged with information that the provider records at the time of an office or hospital visit. The result is a patient population that can interact with providers in new and different ways to optimize care.

You never know when you might have to go into the hospital. I certainly did not plan my hospital visit, – it was totally unexpected. With a PHR readily available, the patient is a giant step closer to protecting their most valuable asset – their health and wellbeing.

Nancy will respond to comments here, or you can check out her blog: HealthCare Basics