Custodial Care of the PHR: Controlling the currency of the future?

28 Mar Custodial Care of the PHR: Controlling the currency of the future?

Custodial (kŭ-stō‘dē-əl) adj.

1. Of or relating to the work of guarding or maintaining;
2. Marked by care and supervision rather than efforts to cure.

The California Health Foundation is a respected and influential healthcare policy organization within the state. They have a research and educational focus which enables to them to occasional commission white papers on various subjects. Having formerly been profiled in a previous issue, and seeing the many positive benefits of such exposure, I keep an eye on their publications. Therefore, it was with interest that I read their most recent report entitled, “Personal Health Records: Employers Proceed with Caution”, which was made available in January 2007. The report was authored by Janlori Goldman JD, the director of Health Privacy Project and a research faculty member at Columbia University College of Physician and Surgeons (what the heck is that? Must be Ivy-league speak for Columbia Medical School), and one of the foremost national advocates of
patient privacy.

Therefore I was surprised to read one of the thought leaders on patient privacy issues discuss the value of an employer owned Personal Health Record (PHR). Essentially it was written as a primer for employers who are considering offering PHR’s freely to their employees. While I appreciate the general assumptions that my employer is interested in my health (aka, my employer wants me to be a healthy happy worker)), I don’t share the Pollyanna perspective that they want my data for altruistic reasons. So while I commend someone of Janlori’s stature for accurately highlighting the potential role and benefits of the PHR, I strongly disagree with the fundamental perspective of the paper.

My employer, by the very nature of having a corporate mission, is interested in reducing costs to increase profits. As an employee, I am a production unit (generating desired outputs) associated with costs (salaries and benefits). My employer is interested in my health insomuch as it can be optimized (like any production input) to maximize my output. If my employer knows that I am a diabetic with strong disposition toward coronary artery disease, or that I suffer from a chronic condition like Crohn’s disease that will ultimately result in significant and sustained expense over time, how will they respond to this information? Will this get incorporate into a decision to hire me? Will it work its way into my annual review? Will my health status now become another mechanism of determining my fitness for corporate advancement, job promotion, or professional opportunity within the company? If this brings shudders, think about what happens when you layer in personalized medicine – do you want your employer knowing your genetic profile, behaviorial predispositions, and predicted intellectual metrics? Do you trust your employer to altruistically use this?

Hate to break it to Janlori, but I don’t have ANY interest in an employer or insurance plan sponsored PHR and neither should you. Matter of fact, I don’t want any part of that world (didn’t you read 1984, or see Gatacca/ Minority Report?)

Conversely, I am interesting in working toward a completely different world. One in which the patient is at the heart and center of the healthcare paradigm. One in which I partner with independent, non-conflicted third party Healthcare Advisory Service companies who help me optimize my own health privately, securely, and personalized uniquely to me. One in which healthcare information is readily available in a human readable format in my own personal health record. One in which my trusted Healthcare Advisor can provide personalized medical information in a relevant, convenient, and through varied customized channels (stream relevant blogs, scientific articles, educational videos, podcasts, multi-media educational production, etc directly to the consumer). This is the patient-centered, timely, effective, efficient, and equitable type of healthcare the Institute of Medicine envisioned when defining the delivery of high quality care.

It is also part of the Health 2.0 world that I see forming even as I write this. This is where company’s like Health Equity, Subimo, Organized Wisdom, Healthgrades, Vimo, Medbillmanager, and the like begin to have influence in shaping the future interactions within healthcare. Healthcare, and quality of care, will continue to be important topics in the future, particularly as human performance begins to be increasingly optimized through technology. This future world is fast approaching.

The PHR will play an essential role in this brave new world by serving as a central repository of patient-centric AND patient-controlled information. For this reason, the concept of PHR data “banking” is not so far fetched. In fact, specific concepts from the financial industry such as banking, security, privacy, transactional interoperability, confidentiality, and the role of financial advisors is directly analogous to what will continue to happen within the Health 2.0 paradigm. And just as you would not trust some shady banking institution with conflicted interests with your financial future, I wouldn’t trust my employer or my insurer with my personal health information. Specifically since I believe that personal health information will become the medium of exchange in this new healthcare marketplace – and if I may be predictive – the essential currency of the future Health 2.0 world.

You can take that to the bank!