Week 14- Increasing consumer participation in health care policy

I was a bit taken aback when listening to our DNP project presentations at the low participation rate many of us experienced. Unfortunately we have all seen this wherever we go. We introduce a great new idea or initiative only to find it poorly received or unsustainable. How can we change this paradigm? The Robert Wood Johnson Foundation found that patients who were actively engaged in their care often demonstrated better outcomes and lower costs (James, 2013). This aligns with what many of us have seen in our personal and professional experience. Taking responsibility and ownership in any situation encourages one to become more invested in the process.

The patient is the direct consumer of health care. The patients should have the most vested interests into how our health policies take shape.  The evolution of Accountable Care Organizations, Patient-Centered Medical Homes and the Patient Portal have prompted providers and organizations to include patients in shared decision making. In fact, there are financial incentives for doing so. However, there are certainly barriers to promoting patient involvement in health policy. A few of these include decreased health literacy, a reluctance to consider the cost of care and the provider’s perceptions (James, 2013).

I would like to consider the effect of direct-to -consumer marketing as a means to promote consumer participation in policy making. We have seen this used ad nauseum (no pun intended!) in the pharmaceutical industry and also each year around election time. This type of advertising has received extensive criticism for misleading the public, offering false hope or inducing paranoia with regard to medications (World Health Organization, 2009). Although this could certainly be used to ‘guide’ patient choices, I wonder how affective this might be in raising public awareness of policy issues. Have you ever had a patient ask you about a certain health policy during an office visit? Can you imagine a time when offices and hospitals gathered a panel of patients to include while developing local policy?

As the way information delivery changes, perhaps the way we chose to engage patients’ needs to change.  I would like to propose the use of resources such as The Conversation Project, to generate discussion about palliative care. This program was designed to help facilitate end of life discussions.


During this ‘round table’ conversation, patients could gain insight into their own wishes and be made aware of their options. Why do these important topics not come as direct mail to patients homes? Why have we never seen a commercial encouraging patients to ask their provider about the health policy that affects them most? I assume the short answer is …$$$.

I found this graphic helpful as I continue to process the levels at which individuals may be involved in policy.

Finally, as we move forward in our careers I would like to encourage each of us to consider how our patients may be involved in policy evolution at our place of work. Seek opportunities to discuss palliative care with your seriously ill patients- it’s the right thing to do.


James, J. (February 14, 2013). Health policy brief- Patient engagement. Health Affairs. Retrieved from http://www.healthaffairs.org/healthpolicybriefs/brief.php?brief_id=86

World Health Organization. (2009). Direct to consumer advertising under fire. Bulletin of the World Health Organization, 87(8). Retrieved from http://www.who.int/bulletin/volumes/87/8/09-040809/en/


Week 13- Sustaining Innovative Environments

Longest (2010) emphasizes the cyclical nature of policy making. He asserts that there is a continuous feedback loop informing and shaping the policy. Those that initiated the policy and those affected by it will recommend some modification based on the outcomes. Positive outcomes should encourage further implementation of a policy and negative outcomes will demand a change.

This is clearly seen in the development of palliative care policies. SB 1004 in California was an outflow of the success of the AB 1745, or the pediatric palliative care waiver.  AB 1745 was passed in 2009 and allowed for palliative and curative treatment to occur concurrently for children utilizing California’s Medicaid program (Keim-Malpass, 2013). This began as a pilot program entitled Partners For Children (PFC). According to a brief published by the UCLA Center for Health Policy Research outcomes from the PFC program included:

  • A 32% reduction in the number of inpatient hospital days.
  • An 11% reduction in total medical expenditure.
  • An increase in families’ quality of life.

Building on this success, a similar provision was made in the Affordable Care Act (ACA), Section 2302.

Many challenges remain to the successful implementation of each of these policies. As we’ve learned through our dive into evidence based practice, sustainability depends on one’s ability to handle change. The same appears to be true with respect to policy making. Each of these policies, SB 1004, AB 1745 and Section 2302 of the ACA, requires continued action to be sustainable over time. Proponents of this legislation challenge policy makers and the public to support further research, training and access for palliative care.

  • Further research is needed to enhance the scientific foundation of palliative care.
  • Further training is needed to create a viable and sufficient workforce to meet the demand for services.
  • Further action is necessary within the health care system to create payment models that support this care, expand community access to services and create quality metrics to define success.

The Affordable Care Act provides a living and breathing example on a grand scale. How the implementation of this legislation plays out may guide future policy development for years to come. The public is not convinced that health care reform is in their best interest. A Gallup poll in November of 2014 demonstrated a 37% approval rating for this legislation (McCarthy, 2014). We should expect a myriad of changes as the implementation of the ACA continues.

It appears that creating a favorable environment for the sustainability of palliative care policy is paramount. The evidence needs to not only be strengthened but to be translated in a meaningful way to the American public. Individuals must recognize that it is in their best interest to have access to these services should the need arise.


Center to Advance Palliative Care. (2011). A state-by-state report card on access to palliative care in our nation’s hospitals. Recommendations for action. Retrieved from  http://reportcard.capc.org/recommendations#Research

Keim-Malpass, J., Hart, T. and Miller, J. (2013). Coverage of palliative and hospice care for pediatric patients with a life-limiting illness: A policy brief. Journal of Pediatric Health Care, 27(6), 511-516.

Longest, B.B. Jr. (2010).  Health policymaking in the United States (5th ed.). Chicago, IL:  Health Administration Press.

McCarthy, J. (2014). As new enrollment period starts, ACA approval at 37%. Retrieved from http://www.gallup.com/poll/179426/new-enrollment-period-starts-aca-approval.aspx

Week 12- Healthcare Finance

Within the health care system, finance may be one of the most convoluted and confusing topics. The current climate within health care dictates that each of us has a basic understanding of what drives cost and expenditures. By the year 2037 healthcare spending is expected to reach 25% of the gross domestic product, accounting for 40% of Federal expenditures (Emmanuel et al, 2012). This growth will surpass expected economic growth significantly. Thus, both policy makers and the public are seeking high quality-low cost interventions to support. Palliative care provides one such avenue.

Both the quality and the quantity of services offered should be evaluated to clearly reflect where change may occur. The Affordable Care Act is set to decrease Medicare spending, however this alone is not thought to control spending enough to sustain the system.  Many innovative solutions have been proposed. The Center for American Progress cited payment reform as well as extending the scope of non-physician providers to foster competition in the market and thus reduce prices (Emmanuel et al, 2012).

The cost for palliative care services often falls within Federal spending. Many of those who receive services utilize Medicare insurance providers. SB 1004 provides palliative care services within the Medicaid benefit in the state of California. Although expanding this service would initially add to federal and state healthcare expenditure, ultimately a savings could be demonstrated. In fact, SB 1004 is proposed to be a cost-neutral plan- the implementation cost should be covered by the savings in lengthy hospital stays, emergency room visits etc.

A systematic review published in Palliative Medicine (Smith, 2014) found that both hospital and home-based palliative care programs demonstrated cost savings relative to the control group. This savings was found primarily in the decreased hospital readmission costs, $6421 for palliative care patients vs $13,275 for individuals receiving usual care (Smith, 2014). This review focused primarily on the cost to the provider or third party payer, it did not take into account out-of-pocket spending.

The literature is consistent in evaluating palliative care services as an affordable delivery model for many patients. A clear definition of palliative medicine and a nationwide expansion of service availability should be considered within the health policy discussion. Medicare, Medicaid and private insurers should include this benefit for their members. Additionally, creative ways to promote these services should be designed. The public deserves to understand this valuable service. Greater patient satisfaction, higher quality of life scores and increased life expectancy should capture the attention of reformers within healthcare.


Emanuel, E., Tanden, N., Altman, S., Armstrong, S., Berwick, D., de Brantes, F.… Topher, S. (2012). A systemic approach to containing health care spending. New England Journal of Medicine, 949-954.

Smith, S., Brick, A., O’hara, S. and Normand, C. (2014). Evidence on the cost and cost-effectiveness of palliative care: A literature review. Palliative Medicine, 28(2), 130-150.

Week 11- Characteristics of Innovators and Change Agents in Healthcare

The picture above depicts many of the qualities of a change agent in healthcare. Elizabeth Hazen and Rachel Brown are responsible for the discovery of nystatin, one of the first effective antifungals to be used successfully in healthcare. They both had tumultuous family backgrounds and few financial resources to pursue their careers. They overcame enormous obstacles to become successful microbiologists and obtain doctoral degrees in a world where women had very little opportunity (Chemical Heritage Foundation, 2010). Their biographies are replete with examples of persistence and collaboration.

Jack Andraka is another example of healthcare innovation at its finest. Jack is a high school student. He has invented a screening test for pancreatic, lung and ovarian cancer that can be completed in just a few minutes at a fraction of the cost of traditional testing. The test can also confirm the diagnosis in the cancer’s early stages. Andraka has won numerous awards in his young career, including the prestigious Intel Science Fair award for $75,000.  He too overcame significant hurdles in his work. His work with pancreatic cancer came after the death of a close family friend. His research was personal to him. Despite his already tremendous success, he plans to continue his research work. He saw a problem and works diligently to seek a solution. His message to the world- “Why not you? Why can’t you come up with the next great innovation or cure?” (Daugherty, 2014).

A third example of innovation and change is the work done by the Cleveland Clinic. The Clinic sponsors an annual medical innovation summit that brings together leaders from health care, business, finance, pharmaceutical research, information technology and engineering. The collaborative work of the summit distributes information on the ten innovations thought to have the greatest impact on healthcare in the upcoming year. This is a very exciting list!

Each of these three examples highlights specific characteristics of innovators and change agents within health care. These qualities include persistence despite obstacles, diligent hard work, creating a collaborative effort, making the research personal and distributing the evidence in an exciting way. These qualities closely align with the tools necessary for creating good policy. Jewell and Bero (2008) write that policy makers often rely on common sense and personal stories to make decisions. They also value collaborative relationships and practical, defined outcomes.

This is an exciting time to be involved in health care. The capacity and resources for innovation are profound. Even within the delivery of palliative care, change and innovation are essential. Innovative solutions are needed to bring this service to remote and underserved parts of California.


Chemical Heritage Foundation. (2010). Elizabeth Lee Hazen and Rachel Fuller Brown. Retrieved from http://www.chemheritage.org/discover/online-resources/chemistry-in-history/themes/pharmaceuticals/preventing-and-treating-infectious-diseases/hazen-and-brown.aspx

Daugherty, S. (2014). Teen inventor sets his sights on new tests for cancer, pollution. National Geographic. Retrieved from http://news.nationalgeographic.com/news/2014/12/141221-andraka-emerging-explorer-inventor-cancer-profile/

Jewell, C. J. and Bero, L. A. (2008). “Developing good taste in evidence”: Facilitators of and hindrances to evidence-informed health policymaking in state government. The Millbank Quarterly, 86(2), 177-208.

Landau, E. (2013). You don’t know them; they may have changed your life. CNN. Retrieved from http://www.cnn.com/2013/05/14/health/lifeswork-gallery-less-famous/

Week 10- Change Theory

John Kingdon (2011) writes that political communities tend to congregate around exciting ideas. They avoid boring subjects. This prompts policy advocates to “sell” their ideas to both policy makers and to the public. Regardless of political affiliation it is interesting to follow how well the Obama administration has “sold” the Affordable Care Act (ACA) to the public. The graph below, from the Henry J Kaiser Foundation, demonstrates the significant struggle that exists between those that support and those that oppose this legislation. Over the past several years, the public has generally viewed this law as ‘unfavorable’.


It is interesting to note that there was a more favorable public opinion when this bill was signed in 2010.  One could suppose that this was because the ACA was exciting. It was new and it was revolutionary in our time. As the excitement faded, the focus became more on the difficult intricacies of the legislation. And public opinion waned.

Excitement for the public does not always have to be positive. The enormity of health care spending has the public involved out of concern, even fear. The switch from a fee-for-service payment based model to an outcomes based system provokes a lot of attention. But how will real change occur?

Jeffery Leibman, of Results for America and The Hamilton Project, asserts that the evidence is what must drive sustainable change (Leibman, 2013). Mr. Leibman writes that tackling problems should be data- driven and outcome based (2013).  Ideally, this would enable the health care system to stop spending money on ineffective programs.  With the United States spending a disproportionate amount of their gross domestic product, relative to individual’s health status, this would seem like a straight forward proposition.

The question remains as to whether the public would support these initatives?

As with the ACA, gaining public support for any policy development is critical. Although legislation may be passed without consensus, (i.e. the ACA) implementation and sustainability are deeply affected by the public. In a study conducted by the Harvard School of Public Health, researchers found that the American public was unlikely to favor being told which treatments were allowed based on their effectiveness (Botta, Blendon & Benson, 2014). Cost-effectiveness research (CER) has become a popular way to curb out of control spending using the best evidence available. CER agencies have been developed in the United Kingdom, Italy, Germany and Australia (Botta, Blendon & Benson, 2014).

This leads me to question whether a firm foundation of evidence can really drive effective change?

Consider the evidence surrounding palliative care services (coalitionccc.org, 2015):

  • Cost neutral or cost- saving.
  • Improved patient satisfaction.
  • Improved quality of life scores.
  • Increased life expectancy.

An article in US News and World Report (Moeller, 2013) labeled palliative care “an enormous game changer”. The evidence is strong and public awareness is growing; yet a bill recently introduced in the House of Representatives (H.R. 1666) designed to provide funding, education and research for palliative care died in committee (congress.gov).

Kurt Lewin theorized that change occurs in a ‘unfreeze, change, refreeze’ format. The American health care system has to ‘unfreeze’ old models and ideals to arrive at any real change. That change must then be ‘frozen’ into our lives, habits and way of thinking.  It appears that in many ways our system is frozen in world where evidence does not quickly translate into practice.

What a great opportunity for the DNP to help build a system of effectiveness and quality for our patients!


Botta, M.D., Blendon, R. J. and Benson, J. M. (2014). Cost-effectiveness decision making and US public opinion. Jama Internal Medicine, 174(1), 141-143. doi: 10.1001/jamainternmed.2013.11332.

Coalition for Compassionate Care of California. (2015). Value snapshot- Home based palliative care. Retrieved from http://coalitionccc.org/wp-content/uploads/2014/12/snapshot_home-based_palliative_care.pdf

Congress.gov. (n.d.) H.R. 1666- Patient centered quality care for life act. Retrieved from https://www.congress.gov/bill/113th-congress/house-bill/1666

Kingdon, J. (2010). Agendas, Alternatives, and Public Policies, Update Edition (2nd ed.). London: Longman Publishing Group.

Liebman, J. B. (2013). Building on recent advances in evidence-based policymaking. Results for America and The Hamilton Project.

Moeller, P. (2013). What you need to know about palliative care. US News and World Report.

Nursing theories. (2013). Change Theory, Kurt Lewin. Retrieved from http://currentnursing.com/nursing_theory/change_theory.html

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

Week 8-Private Sector Innovation and Policy Advancement: The example of SB 1004

Last week we discussed SB 1004 as an example of public policy administered under Medicaid. The discussion revolved around my attendance of a stakeholder meeting to operationalize the new policy (SB 1004). Longest (2010) uses the example of implementing the Older Americans Act to discuss the process of applying new policy. He writes “the essence of the implementation phase of policymaking is that one or more organizations or agencies undertake the operation of enacted legislation, ideally in a manner that realizes the intent behind the legislation” (p. 135).

This is where the private sector is most active in public policy- in the operational activities of legislation.

Longest (2010) continues that the implementing organization and the objective of the policy must closely align to ensure success. SB 1004 is a great example.

SB 1004 directed the California Department of Health Care Services (DHCS) and any interested stakeholders to assist Medicaid care plans in implementing a palliative care benefit to their members as a pilot project (California Legislative Information, 2014). While this program is administered within the public sector, DHCS and Medicaid, the private sector is shaping and informing the policy development. The intent behind SB 1004 is to promote better health outcomes for individuals with serious illness. This legislation recognizes that individuals live longer, have fewer hospitalizations and spend less on health care when enrolled in a palliative care program (California Legislative Information, 2014). Several private organizations were instrumental in providing the appropriate evidence. These organizations continue to guide the policy as it is operationalized under DHCS.

The Coalition for Compassionate Care of California (CCCC) is a private, not for profit partnership of organizations throughout the state that advocate for the highest quality end of life care for Californians. This private organization is often called upon to offer their expertise in guiding policy development. They were in attendance at the stakeholder meeting.

The California Healthcare Foundation (CHCF) is another example of the private sector’s work in guiding public policy. This organization is not for profit and philanthropic in nature. They provide grant funding toward initiatives that support their mission, this includes improving clinical outcomes, removing barriers to care, and supporting healthcare reform, among others (CHCF, 2015). CHCF formed the Palliative Care Action Community in 2013 to establish collaborative partnerships between organizations that were providing palliative services. This community was able to share successes and challenges of their programs and offered support to developing programs. This organization was also represented at the stakeholder meeting for SB 1004.

The Center to Advance Palliative Care (CAPC) is a third illustration of the private sector’s influence on policy. The CAPC is supported through membership and private philanthropy. This is a national organization with a simple mission- “palliative care everywhere” (CAPC, n.d.) The CAPC offers recommendations to policy makers for improved research, greater access to services and workforce development.

I was really unaware of how heavily public policy relied on private sector recommendations to inform legislation until attending the SB 1004 stakeholder meeting. While the meeting was heavily attended by those serving in ‘public’ capacities (Health plan managers, DHCS staff) the discussion revolved around information provided by private entities.

This is an encouraging thought as we move forward in healthcare reform. The subject matter experts are actively involved and often called upon to assist in policy advancement. This is an exhortation to each of us serving in healthcare to participate in policy development regardless of whether we are involved in the public or private sector.


California Healthcare Foundation. (2015). Retrieved from http://www.chcf.org

California Legislative Information. (2014). SB-1004 Health care: palliative care. Retrieved from http://leginfo.legislature.ca.gov/faces/billNavClient.xhtml;jsessionid=7123b315241991b8d06d98c81298

Center to Advance Palliative Care. (n.d). Retrieved from https://www.capc.org

Coalition for Compassionate Care of California. (2015). Retrieved from http://coalitionccc.org

Longest, B.B. Jr. (2010).  Health policymaking in the United States (5th ed.). Chicago, IL:  Health Administration Press.