Originally published March 2, 2020
In today’s dynamic healthcare environment, effective advocacy is essential to ensure individuals get the optimal care and resources to best manage their chronic condition. Advocacy is multi-factorial, encompassing a broad spectrum of actions and channels often aiming to influence public policies and promote sustainable societal change. By enhancing the voice of individuals, advocacy can be performed at multiple levels and via various methods to enhance awareness and potentially improve health outcomes for individuals. Advocacy is often performed by an individual — a patient, caregiver or healthcare professional (HCP) — or on a broader collective scale via a nonprofit or professional organization. HCPs play an important role as their subject matter expertise, along with their extensive experience with patients, positions them in a prime role to be an effective advocate.
Advocacy is acting in favor of a strong belief or cause. An advocate is a person who publicly supports a specific cause. Advocacy occurs in multiple environments, spanning from political arenas and educational settings to healthcare and the workplace. People advocate for things regularly in their daily lives, sometimes without even knowing. Most people do not have formal education in advocacy but learn the skills through experiences and problem solving. There are many forms of advocacy, with the following being the most common: self-advocacy, individual advocacy and systems advocacy.1
Self-advocacy refers to a person being able to speak up and do what needs to be done to meet their needs.2 Common examples include self-advocating for services and resources via the educational system; access to prescribed treatments from insurance companies; and ensuring equality within the workplace.
Individualized advocacy efforts often are focused on enhancing awareness or addressing gaps that impact the needs of a specific person and acting on behalf of their needs. Parents are known for their individualized advocacy in schools to ensure their child has accommodations for diabetes as well as food allergies, learning disabilities or other conditions to help their child thrive in that environment.
Systems advocacy is about changing policies, laws or rules that impact the broader population at a local, state or national level. At times, individual advocates discover that many others are working to address similar concerns toward a common goal and that a collective voice may be more impactful. Advocating collectively at a community, state or national level can often address systemic issues by informing and influencing policy-making at a broader level. Advocating at this level often includes the individual along with coalitions and nonprofit organizations that often engage with state departments, local representatives, government officials and other influencers and decision makers. Communicating and meeting with key stakeholders and incorporating strategies such as sharing experiences, stories and facts can assist in influencing policies and creating long-term sustainable transformation and positively impacting others within society.
Whether it be self-advocacy, advocating for a loved one or at a larger scale, the journey can be long, exhausting, as well as deflating at times. Advocating successfully for a cause requires much tenacity, patience, passion and support. However, today’s digital enhancements and tools assist in simplifying the process of advocacy and can provide a more positive user experience. Digital tools and websites aim to mobilize people and communities toward a common mission with a streamlined, simple turnkey approach targeting an influencer and/or decision maker. Benefits of digital advocacy include peer-to-peer support, streamlined processes, enhanced reach, ease of use, social media optimization and the ability to generate data. An example of a digital advocacy platform developed by a nonprofit organization is the Diabetes Patient Advocacy Coalition and can be found at diabetespac.org.
Most patients and the public look to HCPs as a trusted resource. Patients who trust their HCPs tend to have more beneficial health behaviors and improved quality of life and are generally more satisfied.3 This trust, along with subject matter expertise, places HCPs in a unique position, as they have the potential to advocate on behalf of their patients on various issues while also educating and empowering their patients to become their own self-advocate. Patient Empowerment is the ability to think critically and act autonomously, which is an essential self-advocacy skill.4 An HCP as a patient advocate does not make decisions for the patient but educates and empowers the person to consider all the factors involved in making informed decisions and best navigating the healthcare landscape. Informed patients, who are educated in understanding and navigating the healthcare system and engaging with key stakeholders, have the potential to be more prepared and proactive, which may lead to more productive and effective office visits. Beyond encouraging self-advocacy and providing individualized advocacy, HCPs play an important role at the systems level given their intimate knowledge of patient needs and ability to influence to health care delivery systems, address social barriers, and even impact political policy at a larger scale.5
Diabetes impacts almost 10% of the U.S. population and has significant physical, economic and psycho-social threats that position it as a public health concern.6 Managing diabetes is challenging, and layering on additional barriers such as discrimination, health care disparities, limited access to care and stigma leads to further burden for individuals and society. If not addressed, these trends may continue to support economic strain, health consequences and impaired quality of life for individuals.7 Current concerns include the growing prevalence of diabetes, reductions in government research funding, rapid advances in technology and the lack of affordable access to individualized care, treatments and devices.
Given these challenges, people with diabetes and caregivers have enhanced their advocacy efforts while also supporting the entire community. In addition, the diabetes ecosystem consists of a myriad of patient nonprofit organizations and professional associations aiming to enhance awareness and address public policy issues to ultimately improve the lives of people with diabetes. Patient advocacy groups represent different subsets of the community and vary in mission and priorities dependent on the communities they serve. They promote broad change and engage with key stakeholders, such as patients, caregivers, educators, clinicians, legislators and payers. Patient nonprofit groups are now partnering with professional organizations to ensure the voice of the person with diabetes is a key component and captured when providing education and encouraging policy change. This form of collaboration was demonstrated when the Endocrine Society and Diabetes Patient Advocacy Coalition met with Congress in October 2018, partnering to advocate for raising awareness of diabetes self-management training (DSMT)8 and rising insulin costs. Teams consisting of people with diabetes, caregivers, certified diabetes educators and endocrinologists met with their Congressional representatives to discuss these key issues. In addition, a panel of diabetes experts provided education to policymakers and staff related to these topics.
Many methods and channels exist for diabetes HCPs to advocate for their patients and assist in their self-advocacy efforts. Anderson and Funnel note that a person with diabetes provides 98% of their care.4 Thus, it is pertinent for HCPs to not only educate their patients but also empower and encourage self-advocacy to ensure positive health outcomes (Table 1). HCPs should be familiar and refer patients to these organizations to provide peer-to-peer support and inform patients they are not alone in their advocacy efforts. These groups can assist patients’ self-advocacy efforts and perhaps encourage them to be part of a larger movement related to their cause. When a female with type 1 diabetes shares, “I have never met anyone else with type 1 diabetes,” refer her to an organization such as DiabetesSisters that provides education, support and tools for women to successfully manage their diabetes. Many organizations also have literature with tips on how to connect with your legislators, employer or insurance company.
When referring to advocacy, many HCPs mention reimbursement and insurance appeals and endless paperwork. While sometimes tedious, this is a form of individualized advocacy and can be very effective to ensure people with diabetes gain affordable access to their prescribed treatment, medication or device. Letters from HCPs are impactful; even more powerful is a letter from a constituent, employee or beneficiary sharing experiences and requesting something related to a cause. HCPs should encourage patients to engage and communicate with decision makers and influencers, as their voice is powerful.
Diabetes technology is evolving more rapidly than the regulatory and reimbursement pathways. Many organizations and HCPs are advocating at a systems level to condition the environment for approval and affordable access while preserving the patient/prescriber decision making. HCPs should be open to new types of treatments/technologies and collaborate with their patients to advocate for novel therapies.
A survey of both diabetes patient and professional organizations provides a snapshot of activities where HCPs can engage to help change policy and create impact at a systemic level (Table 2). These professional association channels include working groups, advisory committees, task forces, consultants and steering committees.
Non-medical Switching — The decision to prescribe a medication or device is a joint decision between the patient and their HCP. Non-medical switching is when an insurance company makes a patient switch from the recommended treatment to another without any medical reason but to control costs.9 Based on a study completed by the Alliance for Patient Access (AfPA), “60% of patients faced difficulty finding a medication that worked for them, and after being switched off of that medication, nearly 40% of patients found the new medication to be ineffective.”10 Switching undermines the patient prescriber decision making and leads to confusion on behalf of the patient. Patients also report the nonmedical switching had a negative impact effect on their health, diabetes and overall well-being.9 A nonprofit organization — Children with Diabetes — is working to collect additional data related to nonmedical switching to arm the community with information to develop advocacy campaigns. As an HCP, you can learn more and participate in this survey at mymedsmychoice.org and encourage your patients to partake.
Affordable Access — Affordability of medications is a growing concern across therapeutic areas. Insulin has received attention as many people struggle to afford their insulin, leading to some rationing their insulin to survive. A recent study from Yale found up to 25% of people with diabetes are administering less insulin than needed to save on costs.11 Various organizations and the government are exploring numerous aspects of the supply chain that have contributed to increases in insulin prices. HCPs need to be aware of patients’ concerns so they can jointly make informed decisions on the best insulin regimen while reducing the cost burdens on patients. Areas of opportunity for HCPs include getting more involved with the various organizations that have prioritized insulin affordability.
HCPs play an important role in advocacy by encouraging self-advocacy, acting as individual advocates for their patients and/or participating in system advocacy at a broader level. HCPs can identify advocacy opportunities by listening to and understanding patient needs and the diabetes community, keeping updated on the advances in diabetes therapies and abreast of the challenges in the health care arena. Professional associations provide education and direction on advocacy. HCPs’ experience, expertise and passion position them as powerful advocates to have a significant sustainable impact while improving the lives of people with diabetes.
Access additional resources and practical information to enhance the care and treatment of your diabetes patients.
Alissa Heizler-Mendoza, MA, RDN, CDE, Senior Director of Advocacy and Government Affairs, Insulet Corporation, Newtown, CT
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