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Patient Advocacy in the Community and Legislative Arena

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Mary A. Maryland, PhD, MSN, APN-BC
Rose Iris Gonzalez, PhD, RN

Abstract

Nurses have hundreds of patient experiences upon which to draw in order to impact public policy. It is our obligation to strengthen skills that enable us to influence public policy so we can better serve patients. This article provides examples of how nurses can translate their hands-on experience with patients into steps that will influence policy. We begin by describing advocacy and providing examples of how nurses can advocate in the community, specifically in economic matters and the educational and healthcare systems. Then we describe the process for advocating in the legislative arena. We conclude by noting that the public needs the voice of nursing in public policy and that now is the time to move forward to advocate for patients in these various arenas.

Citation: Maryland, M., Gonzalez, R., (January 31, 2012) "Patient Advocacy in the Community and Legislative Arenas" OJIN: The Online Journal of Issues in Nursing Vol. 17, No. 1, Manuscript 2.

DOI: 10.3912/OJIN.Vol17No01Man02

Key words: advocate, school nurse, public policy, bill, amendment, bipartisan, community health, legislative arena, healthcare economics, educational system, healthcare system

Clinical experiences provide real-life examples illustrating the needs of patients and the outcomes of public policy on patient morbidity and mortality. Registered nurses can impact public policy through advocacy from a unique vantage point. Clinical experiences provide real-life examples illustrating the needs of patients and the outcomes of public policy on patient morbidity and mortality. Nurses should not underestimate their ability to influence access to appropriate, efficient, and effective quality care. They are in excellent positions to share with various constituencies the importance of appropriate healthcare services available to all United States (U.S.) citizens and residents.

Healthcare cost, access, and quality outcomes are a large part of many political agendas (National Health Expenditure Data, 2008). Although elected officials frequently are tasked with taking positions on various healthcare proposals, it is nurses who understand healthcare issues and are trusted by patients and the public. It is important that they prepare themselves to take legitimate seats at the various tables where healthcare decisions are made so they can incorporate experiences and insights into the healthcare dialogue.

In this article we will describe advocacy and provide examples of how nurses can advocate in the community, specifically in economic matters and the educational and healthcare systems. We will also describe the process for advocating in the legislative arena. We will note in conclusion that the public needs the voice of nursing in public policy and that now is the time to move forward to advocate for our patients in these various arenas.

Advocacy Described

When nurses have the ability to share experiences and insights with public and elected officials, they can advocate for patients and families effectively and become a powerful force in the policy-making process. Advocacy involves the process of persuading someone to at least consider one’s point of view. The role of the nurse as an advocate in healthcare policy is not a new one. Historically, from the time of Florence Nightingale, the nurse has been the person who has identified patient needs and sought ways to have these needs met. The many opportunities nurses have to observe first-hand the positives and negatives of the current healthcare system enable them to identify needs and concerns related to the care patients currently receive (or don’t receive). Additionally, nursing continues to be ranked highest among the various professions in terms of being the most trusted (Porter-O'Grady & Malloch, 2011). When nurses have the ability to share experiences and insights with public and elected officials, they can advocate for patients and families effectively and become a powerful force in the policy-making process. Whether nurses are advocating for increased access to immunizations or increased funding for education, the respect they already have strengthens their ability to persuade elected officials and other ‘gatekeepers’ to create the needed changes regarding patient care and services in a variety of arenas.

Although experience can highlight issues, alone it does not offer sound solutions.Nurses also need the ability to analyze these experiences so they can propose sound changes and persuade the elected officials and other gatekeepers to accept these changes. They need to develop skills that enable them to participate in the public policy process.

Advocating in the Community Arena

The following sections will give examples illustrating how nurses can develop and use their skills to advocate effectively in the community to persuade those in positions of power and authority to meet the needs of patients and their families. These arenas include economic matters and the educational and healthcare systems.

Economic Matters

Families are often willing to share with the nurse the difficulty they are experiencing in obtaining needed treatments due to the costs of these treatments. The cost of healthcare continues to rise making it difficult, if not impossible for some patients to receive the care they need. Families are often willing to share with the nurse the difficulty they are experiencing in obtaining needed treatments due to the costs of these treatments. Conversations with patients, neighbors, and the general public can highlight these situations and help nurses address inadequate funding and the effect of this inadequacy on patients’ failure to receive appropriate healthcare services (Institute of Medicine, 2010). Indeed a small amount of effort on the part of the nurse can pay enormous dividends in terms of helping patients obtain the healthcare resources they need.

One example in which the broader community has already addressed inadequate healthcare funding is that of prescription drug costs. Many healthcare providers can share how patients have told them they need to limit the frequency with which their prescriptions are filled because they can’t afford the co-payments or because they simply lack of knowledge regarding how to obtain discounts or community resources to fill their prescriptions. Nurses may be aware of a number of resources, either within the immediate community or within pharmaceutical companies themselves, that can assist those who have difficulty paying for their prescribed medications. These resources may include programs in local stores that offer significant cost savings in terms of pricing for prescription medications. One specific example is that of a national chain store currently offering a 30 day supply of a number of common medications for $4.00, or a 90 day supply of select medications for $10.00 (Walmart, n.d.). Nurses can advocate for patients by sharing this information with their patients, and if necessary, persuading a specific pharmacy to match these prices for a patient, thus enabling patients to receive the medications they need.

Cancer care is a prime area where individual nurse advocacy can play an important role in outcomes for patients and their families. Another example of how nurses can assist patients to overcome economic barriers to healthcare involves cancer care services. Cancer care is a prime area where individual nurse advocacy can play an important role in outcomes for patients and their families. Cancer treatments typically require long-term intervention even though treatments can be episodic. The cost of this care may create an extreme burden for a patient and family with limited resources. In such situations a nurse can advocate by sharing with elected officials and other gatekeepers the high cost of some cancer treatments, the burden this cost places on patients and families, and the need to relieve some of this cost burden. The nurse might also discuss with individual patients or groups ways to obtain lower prices when looking for ways to meet both the physical and the emotional care needed while receiving treatment for cancer. A nurse might be able to share treatment resources available through not-for-profit groups, such as the American Cancer Society, both with patients and with nurses through workshops and/or seminars. These may seem like simple acts, yet they can have a profound impact on patient outcomes and quality of life.

Although Medicare Part D has helped to address some concerns regarding the high cost of prescription drugs for seniors, the costs of medications continue to be a major concern for many patients. Nurses can advocate for patients by helping patients do the research needed to fit a given situation. Specifically, they can help to develop a basis for comparison of one drug over another, including cost as one of the factors to consider. The nurse might also teach patients how to ask their provider whether there are prescription preparations that are combinations of drugs and whether such preparations might offer cost savings. For example, if the patient is currently taking both a blood pressure medication and a diuretic, the nurse may help to advocate by asking the provider to consider a combination medication that would eliminate one prescription. If the provider has access to prescription drug samples, the nurse might also work to persuade the provider to give the patient medication samples to tide the patient over until the prescription can be filled. Medication samples can provide an important safety net for patients; they can be the difference between patients not taking needed medications and patients continuing to control their health problem.

The Educational System

By educating students, parents, and school administrators, the nurse can help them become great allies to effect needed changes to strengthen healthcare services for students in the school system. Nurses can impact the quality of healthcare by advocating for an adequate number of school nurses in the primary and secondary school systems. In many cases the number of students that a school nurse is expected to care for can be overwhelming (National Association of School Nurses [NASN], 2010). It is not uncommon in some parts of the US for the school nurse to be responsible for the care of students in more than one school, thus compromising the care that is offered because the ratio of school nurses to students exceeds national standards (NASN, 2010). In these situations school nurses themselves can become involved in the community and/or attend school board meetings to share the negative impact of not having enough nurses to monitor students’ health status. It is important that school nurses share this concern with the community and use their knowledge and expertise to educate and advocate for change. They can advocate for this concern to be addressed with school principals, parents, teachers, and school boards. Data could be used to build a case and demonstrate that on the days a school nurse is not available, healthcare decisions may be deferred to staff who are not qualified to give direction on healthcare issues, thus compromising the safety and quality of care for students (NASN, 2010). By educating students, parents, and school administrators, the nurse can help them become great allies to effect needed changes to strengthen healthcare services for students in the school system.

Working collaboratively with educational institutions of higher learning can improve healthcare in the community by leveraging a relationship with an academic institution. Consider a situation in which a public health clinic needs additional staff and a local nursing program is experiencing a shortage of nursing faculty. Nurses from both the clinic and the nursing program could advocate for their administrators to develop a collaborative relationship that would meet immediate patient care needs and provide a resource necessary to meet the need for an adequate supply of future nurses. This would happen if nursing students could be assigned to the clinic both to gain experience in clinic nursing and to provide needed care while one of the qualified clinic nurses served as the faculty for these students.

The Healthcare System

...it is critical that nurses gain a broad understanding of the different projects in their agencies and in their community that may be seeking funding in order to better influence the public debate about healthcare resource distribution. Additionally, nurses can impact healthcare through their relationships and experiences in their various healthcare work settings. Perhaps a given community healthcare institution is considering a remodeling or expansion project. If a public forum, sometimes called a hearing, is called to facilitate public discussion about the proposed remodeling/expansion of services at an individual healthcare center, nurses who work together as a group could attend such a hearing and offer information about why the proposed project would be a good idea. Nurses could highlight, based on experiences, the benefits of the project. They might explain how the quality of services would be enhanced if, for example, a new area was built to replace an aging, out of date and/or overcrowded section of the facility. They could describe the potential impact of the project on patient care, including length of time to receive services; concerns regarding scheduling issues; and expected benefits of the project such as improved patient care, quality outcomes, and patient satisfaction.

Frequently, funding for important healthcare services and projects competes with funding for other important projects, such as education and infrastructure development. Therefore it is critical that nurses gain a broad understanding of the different projects in their agencies and in their community that may be seeking funding in order to better influence the public debate about healthcare resource distribution. In so doing they will help patients secure the resources and care they need to be healthy.

Advocacy in the Legislative Arena

An elected official who is well respected and who sits on a key committee can carry significant weight in this process and can best facilitate the bill’s advancement. Providing information to elected officials can be a source of significant influence and reward. As a member of the nursing profession involved in the policy development process, the nurse has the opportunity and the responsibility to provide accurate and up-to-date information. This opportunity requires that the nurse be prepared to discuss the issues factually, that information be based on credible research, and that facts be double checked and presented in a succinct manner using easily understandable language. The approach must be cordial and given in a spirit of cooperation with the hope of achieving the desired outcome or at least an acceptable compromise.

A variety of resources provide information related to how our laws are made. One resource is Project Vote Smart (2010). For discussion purposes, we will provide below a broad, general overview of the process by which laws are made. However do note that the U. S. Congress and each State Legislature all have their own specific rules. For more information regarding specific rules, please refer to each individual website. The U.S. Constitution Online (2010) provides the rules for the U.S. Congress.

The first step in the legislative process is for an individual to desire to address a certain issue or problem. The issue may be as simple as a desire to give public recognition to a person or event or else an issue of a more complex nature. That desire or idea needs to be communicated to a legislator or staff member who believes the idea or issue is worth addressing through the legislative process and who will work with legal counsel to develop a bill. Once the bill is developed, the legislator will approach colleagues to garner support for its introduction. A bill is usually introduced only after some support for the proposed piece of legislation has been secured. An elected official who is well respected and who sits on a key committee can carry significant weight in this process and can best facilitate the bill’s advancement.

It is often the case that the more co-sponsors garnered, in a bipartisan way, the greater the likelihood the bill will advance. The good news is that nurses can be the impetus for the introduction of new bills. Typically this would mean the nurse would need to find an elected official who is willing to listen to her/his idea. Consider the example of a bill related to implementation of the advance practice registered nurse (APRN) Consensus Model in your state. A state legislator in either the House or the Senate could take up the cause. This process usually involves multiple meetings with the legislator or the legislative assistant; it will culminate with the crafting of what will become a bill in support of the APRN Consensus Model. It is often the case that the more co-sponsors garnered, in a bipartisan way, the greater the likelihood the bill will advance. Seniority of the elected official seeking to advance the bill may be also play a role.

Nurses can help facilitate these steps of getting a sponsor, making the proposal, and persuading potential co-sponsors to sign on with their support. Because elected officials are not typically healthcare providers, the nurses’ real life experiences and commitment to the cause will be essential for a successful outcome.

All proposals are identified as either House bills or Senate bills and they become part of the legislative record for that session. If a bill has significant support and is presented successfully, it can be sent to either the House or the Senate for consideration. Next bills are reviewed in Committee. Sometimes the assigned committee can be critical in terms of making changes or amendments, based on the committee’s knowledge of the potential constituent concerns (The U.S. Constitution Online, 2010).

Nurses can help facilitate these steps of getting a sponsor, making the proposal, and persuading potential co-sponsors to sign on with their support. Many organized groups, including nurses, have lobbyists who are experts in navigating the complex legislative process. On a rare occasion, a bill can sail through the legislature. Most commonly, however, bills have a longer process and require public hearings. These hearings provide an opportune time for nurses to gather other like-minded nurses and supporters to present what is called ‘testimony’ on behalf of the specific piece of proposed legislation. If public testimony is solicited, then notification of the scheduled hearing must be provided. The scheduling of the date for the testimony needs to be known fairly well in advance so that persons or organizations desiring to be heard are given the opportunity to do so. Typically on the state level, once notice is provided, an individual may participate and share their concerns or support for the legislative proposal under consideration. This is considered testifying before the committee. On the federal level, an individual must be invited by a legislator to participate in the hearing. Those serving as formal witnesses are expected to provide expert comments (testimony) regarding the issue under consideration. They are given set time parameters and instructions as to the information the Committee is seeking. This process becomes an opportunity to support/oppose the legislation. It also provides an opportunity to propose changes in the language of the bill. Finally, the public testimony process allows legislators the opportunity to hear both sides of an issue and get their questions or concerns addressed.

Once a committee of elected officials reviews a bill or proposed legislation, usually after the hearing process is completed, it can move forward. There are some procedural maneuvers that can be implemented so that a bill is not called, or is temporarily postponed, or is postponed indefinitely. However, if a bill is considered and has successfully passed either the House or the Senate it can then move to the other chamber. There are several calendars for legislative activities; and it is the decision of the Speaker of the House or the Senate Majority Leader to determine the order in which bills will be debated.

The legislative process is one of negotiation and consensus...It is important for nurses to be sure that they've established coalitions in support of their proposed legislation well in advance of even seeking support from a member of the House or Senate The process of actual voting is not particularly complex. Legislators are given two choices up or down (for or against). The voting can be completed electronically or by means of a voice or roll call vote. The decision regarding a voice or roll call vote is a privilege of the House or Senate members and can be requested at their discretion. Once a bill has been approved by either the House or the Senate, it is sent to the other chamber where the same process and tracking of approval or disapproval occurs. If either of the chambers passes a bill which has been amended, then any changes from the original language in the bill must be reconciled with the other chamber. The House or Senate can decide to adopt the amended bill or they can choose to establish a conference committee to work out the differences in the legislative language. The conference committee is comprised of representatives from either chamber who are appointed by their respective chamber to negotiate a compromise that both chambers would be willing to adopt.

On the state level, once successfully negotiated with both the House and Senate, and adopted by both houses, the bill can be sent to the Governor. If the Governor signs the bill, it becomes law. There is the option for no action to be taken when the legislature is in session. If indeed there is opposition to the bill, the Governor has the option to hold it. If the Governor takes no action on the bill submitted within 10 days of the legislature’s adjournment, the bill is considered dead. On rare occasions the legislature can attempt to override a gubernatorial decision, in other words, override a veto. However, doing so requires a two thirds vote after a quorum of the chambers in both the Senate and House has been established. This bar to override a veto is conspicuously and deliberately high. As you can see, the legislative process is a difficult, tortuous, and time-consuming process that can be influenced by a number of external forces. The process alone makes it difficult to create new laws. Because state laws differ, it is important that nurses refer to their own state legislative website to get the most accurate information regarding their legislative process.

If there is good bipartisan support, and if the nursing community has come together around the proposed legislation, the process to move it forward can be significantly shorter and easier. It is important for nurses to be sure that they've established coalitions in support of their proposed legislation well in advance of even seeking support from a member of the House or Senate (The U.S. Constitution Online, 2010). This step can ease the way towards introducing the bill. There can be more than one sponsor on a piece of legislation and co-authoring bills is a popular strategy among many legislators. If there is good bipartisan support, and if the nursing community has come together around the proposed legislation, the process to move it forward can be significantly shorter and easier.

Having the right sponsor for a piece of legislation does not ensure all will be smooth sailing. Frequently on significant but controversial issues there are equal numbers of people who are mobilizing their forces in opposition. The legislative process is one of negotiation and consensus. The lack of a vote on a piece of legislation that nurses support may be a temporary setback but not necessarily an indication that the 'game' is 'over.' There will be another opportunity, perhaps in the next session, to perfect the proposed legislation and try again. A renewed effort, great sponsors, bipartisan support, and hard work may prevail in getting the legislation passed at a later date.

Conclusion

Our perspectives as nurses, our experience in patient care, and our passion for quality care are valuable tools for creating change. Nurses have the knowledge, experience, and skills to be excellent advocates. This article has provided examples demonstrating how a nurse can create change by engaging in the advocacy process in the community to impact healthcare access, cost, and quality.It has also provided an overview of a state legislative process, offering specific advocacy strategies to enable readers to become effective advocates in legislative arenas. The skills nurses need to become successful advocates include the ability to develop a clear and broad understanding of the issues, to know the players, and to know how their proposed solution will impact the problem being addressed. As noted above, nursing is the most trusted profession. Yet nurses need to earn this position of honor, respect, and trust every day. Similarly in the policy-making arena, trust is of paramount importance and needs to be earned.

As authors we hope this information has been sufficient to entice you to get involved and become an advocate for your patients both in your community and in the broader legislative arena. Nurses have much to offer: their knowledge, tenacity, public support, and the courage of their convictions. Our perspectives as nurses, our experience in patient care, and our passion for quality care are valuable tools for creating change. Now is the time to move forward and advocate for patients in these various arenas. The public needs our voice!

Authors

Mary A. Maryland, PhD, MSN, APN-BC
E-mail: mmaryland94@aol.com

Dr. Mary Maryland, a board-certified adult nurse practitioner, is currently the American Cancer Society Clinical Nurse Navigator for Loyola University (Maywood, IL) Health System. Her research interests include primary care, health promotion, and disease prevention. She has held nursing positions in academia, administration, and direct patient care.

Her current professional contributions include service as a Health Resources and Services Administration (HRSA) grant reviewer, a member of the Joint Commission’ s Ambulatory Professional and Technical Advisory Committee (PTAC); the National Quality Forum Healthcare Disparities and Cultural Competency Consensus Standards Steering Committee; and the American Hospital Association Health Research & Education Trust (HRET) Institutional Review Board. She is an active researcher with the University of California (San Francisco) International HIV/AIDS Nurses Network.

Dr. Maryland is a past member of the Board of Directors for the American Nurses Credentialing Center and the American Nurses Foundation, and a past board member and vice-chair of the American Nurses Association Political Action Committee (PAC). Additionally, she has 22 years of service as a volunteer for the American Cancer Society Illinois Division. She currently serves on the Board of Directors for the University of Illinois Alumni Association and on the Andrews University Department of Nursing Advisory Board in Berrien Springs, Michigan. She is also a member of the Editorial Advisory Board of OJIN: The Online Journal of Issues in Nursing.

Mary provided testimony in Washington, DC before Speaker Nancy Pelosi for the Congressional Committee looking at the Health Insurance Reform proposal component of the Affordable Care Act. She is a founding member of Congressman Danny K. Davis’ 7th Congressional District Healthcare Task Force.

Dr. Maryland earned her Master of Science in Nursing from Governors State University (University Park, IL) with a focus on nursing administration, and her postmaster’s certificate as an adult nurse practitioner at North Park University in Chicago. She received her PhD in Nursing Science/Public Health from the University of Illinois at Chicago.

Rose Iris Gonzalez, PhD, RN
E-mail: Roseig@comcast.net

Dr. Gonzalez has worked in the Government Affairs Department at the American Nurses Association (ANA) for more than 17 years, and has served as the Director of Government Affairs for the past 11 years. In this role she oversees the department that lobbies both the Executive Branch of the United States (U.S.) government and the U.S. Congress on issues important to nursing. These issues include nursing workforce development programs, staff nurse issues, and issues of concern to Advanced Practice Nurses. Dr. Gonzalez coordinates the work of the ANA-Political Action Committee which provides funding for candidates running for political office on the federal level and also the Nurses Strategic Action Team (N-STAT), ANA’s grassroots program, along with ANA’s State Government Affairs Program, which serves as a resource and provides strategy on state legislation to ANA’s state nurses’ associations. These responsibilities allow for an integrated approach to Federal and State legislative activities.

Before coming to ANA, Dr. Gonzalez served as the Acting Executive Secretary of the New York State (NYS) Boards for Optometry and Veterinary Medicine and prior to that worked with the NYS Board of Nursing. She has held various positions in nursing and worked in a variety of healthcare settings. She has a BSN degree from Mount Saint Mary College and a Master’s of Professional Studies degree with a concentration in healthcare administration from the State University of NY in New Paltz. In August 2011, she earned a PhD in Nursing from George Mason University, Fairfax, VA.

References

Institute of Medicine of the National Academies. (2010). The future of nursing: Leading change, advancing health. Retrieved from www.iom.edu/Reports/2010/The-Future-of-Nursing-Leading-Change-Advancing-Health.aspx

National Association of School Nurses. (2010). New student – to – school nurse ratios new 2009 ratio ruler shows disparities in public schools throughout the nation. Retrieved from www.nasn.org/

National health expenditure data. (2008). Retrieved from www.CMS.HHS.gov/national health expand data/downloads/project 2008.pdf

Porter-O'Grady, T., & Malloch, K. (2011). Quantum leadership advancing innovation transforming healthcare, 3rd ed. Sudbury, MA: Jones and Bartlett Learning,

Project Vote Smart. (2010). Government 101: How a bill becomes law. Retrieved from www.votesmart.org/resource%20_govt101_02.101%20_02

The U.S. Constitution Online. (2010). Constitutional topic: How a bill becomes law. Retrieved from www.usconstitution.net/const.html

Walmart Corporate. (n.d.) Affordable prescription program. Retrieved from http://walmartstores.com/HealthWellness/8247.aspx


© 2012 OJIN: The Online Journal of Issues in Nursing
Article published January 31, 2012


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