Week 9- Access to data and privacy protection in an electronic age

This week I would like to diverge momentarily from discussing palliative care access to a topic closely aligned with many of the tenets of palliative care medicine. This is the development and dissemination of POLST forms. The Physician Orders for Life-Sustaining Treatment forms have become a companion cause to many palliative care advocacy groups. In fact, the trend in POLST documentation is to establish a state or federal electronic repository of these documents.

The POLST is a predetermined, defined medical order for patient care. These orders are often utilized in emergent situations and contain immediately actionable interventions. The challenge of adhering to patient’s wishes, in particularly at end of life, has been discussed in previous weeks and contributes to the drive behind creating a nation-wide POLST registry. Research has demonstrated that obtaining quick access to this piece of paper, albeit brightly colored, has been challenging and thus patient wishes may not be followed in an emergent situation (Zive & Schmidt, 2012).

A number of questions arise when considering an electronic POLST registry:

How will these records be accessed?

Where will they be housed?

Who will have access to retrieve these physician orders?

How will the privacy of each record be maintained?

POLST legislation is relatively new in California (CA). Assembly Bill 3000 legalized the use of POLST forms and came into effect in 2009. The Coalition of Compassionate Care of California (CCCC) manages the use of POLST in the state. Of note, the CCCC is the prevailing non-profit involved in the Palliative Care Access Project underway in California. One challenge in CA is that the emergency response system in the state is composed of 32 separate agencies. This means there is no definitive residence for a POLST registry database.

The California Healthcare Foundation (CHCF) has researched the need for an electronic POLST registry and has begun a pilot program to develop this electronic system just this year. The organization is calling for submissions from technology vendors to develop a prototype and discuss assimilation into existing electronic medical record (EMR) systems. The POLST Paradigm Task Force registry has submitted recommendations to CHCF on the functional requirements of this system. These have included a mechanism to ensure accuracy of data entry, protection from unauthorized access and compliance with HIPPA. An interesting consideration is the ability to cross-reference the ePOLST system with the California Death Registry.

I can appreciate the slow and meditative process in which CHCF, CCCC and the state of California have proceeded into the world of electronic health care registries. POLST forms have solid evidence supporting their use. Providing quick and accurate access to these forms is paramount for providing patient centered care and achieving positive outcomes. An appropriate use of technology may generate greater patient satisfaction with medical interventions in emergent or end-of-life situations.

There are many questions to be answered in the development of a successful ePOLST repository. This provides a great opportunity for the health care industry to reach out to the business, technology and information management sectors in a positive collaboration effort.

This video provided by HealthIT offers a wonderful justification for health information exchange in a way the public can understand. Just for your viewing pleasure!


California Healthcare Foundation. (2014). Briefing- exploring the need for a POLST registry in California. Retrieved from http://www.chcf.org/events/2014/briefing-polst-registry

HealthIT.gov(2014). What is HIE? Retrieved from  http://www.healthit.gov/providers-professionals/health-information-exchange/what-hie

POLST California. (2015). California POLST registry analysis. Retrieved from http://capolst.org/

Zive, D. and Schmidt, T. (2012). Pathways to POLST registry development: Lessons learned. Retrieved from http://www.polst.org/wp-content/uploads/2012/12/POLST-Registry.pdf


4 thoughts on “Week 9- Access to data and privacy protection in an electronic age

  1. laceydnp says:

    I remember learning about the POLST form from a palliative care nurse practitioner at the hospital where I used to work. The POLST form is a great way to make wishes be known. However, as you made clear, these stated wishes end up being obsolete information when a piece of bright colored paper cannot be found in the patient’s chart in a timely manner. I agree that storage of healthcare forms, such as the ePOLST, is an opportunity for collaborative efforts between the healthcare, business, and technology management realms. If the ePOLST can be successfully uploaded in EHRs and stored in a repository, I would hope that other quickly needed healthcare forms could follow the path laid by the ePOLST.


  2. clarinet20 says:

    The ePOLST repository is such a wonderful idea and one that I support 100%. I recently had an experience in the hospital where a patient was admitted from a care facility, with the orange piece of paper that stated he was a DNR, but the ER doctor had put full code into the computer because he did not see the patient’s orange piece of paper. Furthermore, the attending floor physician had yet to round in order to update and place more complete and proper orders. We had paged the doctor a few times to address this, but he had yet to round. The patient coded a couple of hours later, interventions were initiated, the patient was intubated, and then the doctor came to the bedside and stopped the efforts. The patient could have been saved from these interventions at the end of his life, which would have been consistent with his wishes, if there had been an online database where the first physician who put in the orders could have verified the information and made sure the hospital orders were consistent with the patient’s wishes.
    I was wondering what the protocol is if the patient changes his or her wishes. Does it take a long time to update that database because I could see that being a potential problem. What do you think?


  3. L.Conmy says:

    Having an ePOLST would be great especially in the Emergency Department. I worked in the ED most of my nursing career and many times we would do CPR or intubate patients because we would not know their resuscitation status. We would sometimes not find out until after the patient was resuscitated and on a vent. This would be heartbreaking for family member who would arrive only to have their loved one taken off life support and know this is not what they wanted.
    It is great there is a group trying to achieve this. I would imagine there are several technological barriers that would need to be overcome in order to bring this to fruition. Does this group have a time-frame when they believe ePOLST could be up an running?


  4. jhmardnp says:

    Why would a repository be developed when there is existing mechanism for Advance Directives to be included in the EHR as one of the requirements for the Meaningful Use Incentive Program? One of the issues with this requirement is developing a standardized document for inclusion in the EHR. The POLST form is one of the possible templates that is under consideration. JHM


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