The Data of Advance Care Planning

Michigan Health Information Network Shared Services (MiHIN)—as the state-designated entity for health information exchange and a lead entity in Michigan’s five-year Health Information Technology (HIT) Plan— is taking the lead on understanding the current state of information and data flow to support serious illness care

MiHIN’s Evolving Role in Advance Care Planning

Advance Care Planning (ACP) is the process of discussing what treatment and care an individual may or may not want, and whom that individual would want to speak for them if they cannot speak for themselves. Part of the ACP process involves the creation of documents which outline the individual’s preferences and decisions, which, by design, were intended to ensure that future care adheres to the individual’s choices, thereby fostering patient self-determination. These documents collectively are known as advance directives (AD).

AD documents outline treatment preferences, designate an alternate decision maker (patient advocate), and, in some spaces, are beginning to document patient values intended to guide care teams in conversations around treatment for serious illness. There are several different document types and various formats for this information; the only legally-binding AD in the State of Michigan is the Patient Advocate Designation (also known as the Durable Power of Attorney for Healthcare).

Funding partnerships with the Michigan Department of Health and Human Services (MDHHS) have supported MiHIN to develop a centralized repository where care teams and individuals can store and retrieve AD documents. MiHIN’s Advance Care Document (ACD) Use Case supports the electronic storage and retrieval of ACDs from any organization participating in the ACD Use Case. This use case allows users to query, retrieve, and display ACP documents from one vendor repository.

Making Choices Michigan (MCM), adopted as a strategic business unit of MiHIN following an affiliation, started over a decade ago as an independent non-profit focused on preparing individuals and organizations to engage people in Advance Care Planning conversations. MCM efforts were pioneering and advanced the ACP movement for our region.

In recent years, a growing awareness (stemming from over 20 years of quality improvement data!), has led to questions about the effectiveness of the Advanced Care Planning movement nationally. These findings and national dialogue motivated MiHIN to re-evaluate how we can create the most impact for our stakeholders in Michigan as it relates to this work.

To that end, MiHIN hosted a series of workshops to better understand the Michigan environment, stakeholder needs, role we should play to support, and to highlight barriers to success that might exist beyond our reach. Identifying and elevating those barriers in a whitepaper for our stakeholders and partners at MDHHS and the HIT Commission, was also a goal. This white paper outlines the six most prominent and agreed-upon solutions to increasing the documentation and interoperability of advance directives, as identified by Michigan’s healthcare professionals.

Through this convening it became clear that the MiHIN’s role as a health information exchange should focus on the completion and movement of patient advocate designations and information to support care teams in serious illness conversations.

Accordingly, MiHIN will suspend the  Making Choices Michigan (MCM) program which consisted of Advance Care Planning (ACP) training, individual and group ACP facilitation as well as workgroups to help advance the practice of ACP training and facilitation in the state of Michigan.

Our goal is to support learning health systems with standardized datasets yielding improved care and insights into disease causes, treatments, outcomes and patient satisfaction. It is therefore incumbent upon MiHIN to not only continuously monitor our ecosystem, but to evolve appropriately to what the data is showing us.

2023 Advance Care Planning Workshop

MiHIN, as the state designated entity for health informaton exchange and a lead entity in our state’s five-year Health Information Technology (HIT) Plan, is responsible for understanding the current state of information flow to support end of life care.

Purpose of Workshop Series: To understand, from care teams, nurses, doctors, payers, and hospital perspectives, what data/documents are important to make available to clinicians, along with when, how, and why.

Advance Care Planning: Resources