Minorities are often not accurately represented in clinical trials. For example, although Hispanics comprise 17% of the population of the United States, in terms of participants in nationwide clinical trials, only 1% are of Hispanic origin. The All of Us Research Program is determined to change this.
Norma G. Cuellar, PhD, RN, FAAN, president of the National Association of Hispanic Nurses (NAHN) and a professor at the University of Alabama Capstone College of Nursing, took time to explain all about All of Us.
What is All of Us and how does it work? How is the program attracting participants?
The All of Us Research Program is a historic effort to gather data over many years from one million or more people living in the United States, with the ultimate goal of accelerating research and improving health.
After completing the consent process, participants will be asked to contribute information about their medical history and lifestyle. Participants, who come from all 50 states, may also be asked to have their physical measurements (blood pressure, height, and weight, etc.) taken at a local enrollment center and/or to donate blood and urine samples. They will have access to their study results, along with summarized data from across the program.
NAHN is a community partner in the Community & Provider Gateway Initiative (CPGI), a part of the All of Us Research Program with the National Institutes of Health. NAHN has joined the effort to promote awareness of the initiative among health care providers of Latinxs and the Latinx community. NAHN, like other partners, are holding local events within communities such as webinars, booths at festivals, and sharing information at local health fairs.
Additionally, the program has two mobile exhibits, called the All of Us Journey, which tours the U.S. to spread awareness and educate communities about the program. The second Journey bus has an enrollment center on it that allows visitors to enroll in the program on-site.
We now have more than 200,000 participants enrolled and are on target with our goal of having at least 75% of our participants come from historically underrepresented communities in biomedical research. This is why our work at NAHN to raise awareness within the community is so important.
Diversity is a core part of All of Us, and our goal is to achieve “quadruple diversity” – diversity of people, geography, health status, and data types.
What kind of data are you collecting and why? Who will be able to gain access to this data? What will they be using it for?
After participants complete the consent process, they will be asked to contribute information about their medical history and lifestyle and can even opt to share their electronic health record. The next step, participants will be asked to share their physical measurements (blood pressure, height and weight, etc.) and donate blood and urine samples, which is captured at a local enrollment center. This year, the program announced a partnership with Fitbit to enable participants to sync their wearable device with their All of Us account to share data such as the number of steps they take daily. As technology improves, the program hopes to increase the types of data it collects.
The program will have the scale and scope to enable research for a wide range of health research. A research program of this size will have the statistical power to detect associations between environmental and/or biological exposures and a wide variety of health outcomes.
Examples of the scientific opportunities presented by the program are:
- Develop ways to measure risk for a range of diseases based on environmental exposures, genetic factors, and interactions between the two
- Identify the causes of individual differences in response to commonly used drugs (commonly referred to as pharmacogenomics)
- Discover biological markers that signal increased or decreased risk of developing common diseases
And in May 2019, the program released their beta version of its interactive Data Browser, to provide a first look at the data that participants are sharing for health research. For researchers like myself, this is really exciting!
Participants, researchers, citizen scientists, and other members of the public may use the online tool to learn more about the All of Us participant community and explore summary data. Later, researchers will be able to request access to more in-depth data for use in a wide range of studies that may lead to more customized ways to prevent and treat disease.
The program is said to run for 10 years. So will researchers be accessing the information for the remaining nine years? Or do you need to hit a certain number of people to begin making the information available?
The program launched their beta version of its interactive Data Browser, and later, more in-depth data will be available through the Researcher Workbench. Researchers seeking access to more in-depth data than the public Data Browser will need to register, complete researcher ethics training, and sign a data use agreement.
Just as diversity in participants and in data types is important to All of Us, so is the diversity in researchers. As a researcher, I’m looking forward to seeing what opportunities to advance precision medicine will be possible with the All of Us unique data set.
How and why will this help research? In what ways?
Building a diverse research cohort of one million or more people will enable researchers to conduct medical research that is more reflective of the diverse population of the United States. Nationally, the growth of the Hispanic population has remained consistent, and it is expected to reach 28.6% by 2060. The All of Us Research Program will advance precision medicine and ensure that no one is left behind in future studies—including the Hispanic community.
For more information, visit JoinAllofUs.org.
So often today, you turn on the news to see that another shooting has happened in the nation. They happen at schools, movies, concerts, nightclubs, grocery stores, shopping malls, and even in health care facilities.
Do you know what you would do if you were around when an active shooter event took place? David W. McRoberts, CPP, a retired Law Enforcement Captain with 30 years of experience, is a security consultant for The Sullivan Group, is the Owner of Assured Assessments, Inc., and is the co-author of the course “Active Shooter Event in a Healthcare Environment.” McRoberts says that instead of becoming a victim who says after such an event, “I couldn’t believe what was happening, and there was nothing I could do,” nurses need to know that “There is always something each of us can do—but we must have thought it through in advance.”
Develop These 3 Habits
McRoberts says that nurses should subscribe to the following personal protection skills as their personal safety habits:
- Situational Awareness: Knowing exactly where they are, where they are moving to or from, and what exists around them in terms of their realistic ability to react to occurrences in their presence.
- It Can Happen Anywhere: Nurses must acknowledge that bad things happen—and often without warning. McRoberts says that this doesn’t mean nurses need to become paranoid, but rather, understand that shootings can happen anywhere.
- See the Threat: He also states that nurses must develop the ability to look for and see threats—and suspend disbelief. “They must take the first two habits and merge them into an ironclad ability to not become paralyzed with shock and fear and fall victim simply because they never once even considered the fact that they would need to function in a moment of the gravest extreme,” says McRoberts.
Shots Fired: What Do You Do?
When asked about the first thing that nurses should do, McRoberts says, “Because nurses are professional caretakers with ethical, moral, and personal value-based responsibilities in the care of others, this is not an easy circumstance to navigate. Active Shooter Events on average last about two minutes. Shooter victims can be random or specific individuals that the shooter targets.
“With that as a baseline, I believe that creating or increasing what law enforcement refers to as the ‘reactionary gap’ is essential. Simply put, this is creating more distance and/or cover between themselves and the threat. That may mean temporarily leaving the immediate area of patient care. Nurses may feel they are abandoning their patients, but they need to remember that these events are over in about two minutes. The brutal truth is that when faced with a person bent on shooting and killing people, nurses who are determined to remain stalwart and immovable will, in all probability, become victims themselves and incapable of delivering patient care. It’s better to have moved away from the threat and then return to patients when the event is over.”
Do You Interact?
What happens next? Do nurses provide aid? Should they talk with the shooter? “There are as many different scenarios to Active Shooter Events as there are events themselves; they are very dynamic events. A nurse’s first reaction to an injury resulting from an Active Shooter Event would be to render aid. Perhaps this is the right thing to do—maybe this action will decentralize the shooter’s thought process enough to stop the carnage. But like so many reported Active Shooter Events, it may be that nothing stops the shooting and killing until and unless the shooter stops or is stopped,” explains McRoberts. “A nurse may believe he/she can reason with an active shooter, but attempting this may be a tactical mistake; interacting/talking with a person who has already decided to shoot, injure, and kill others is too risky. Begging for compassion from a shooter—including begging for their own life or the life of another—needs to be supplanted with fighting for their own life and the lives of others.”
Keeping a Clear Head
Unless you prepare before an Active Shooter Event occurs, it can be nearly impossible to keep a clear head. “Each of the previous skill developments build one upon the other to create a foundation of action items that give nurses the best chance to survive. With that as underlying support, the next step is practicing ‘stress inoculation’—not the clinical variety, but the very practical application of understanding our limitations as humans and what happens to us physiologically when we are under extreme stress,” says McRoberts.
“Tachypsychia, auditory exclusion, and fine motor skill erosion occur in everyone and diminish our abilities to function under stress. However, we can mitigate these negative effects and develop the ability to function through the high stress of an Active Shooter Event. In its most basic form, stress inoculation is the practice of very specific actions, movements, and functions. Consider what we would need to do in a high-stress event: see clearly what is happening; speak clearly to communicate; walk or run; dial a phone; etc. To complete tasks under stress, nurses need to practice them while under manufactured stress,” says McRoberts. “For example, a common situation in an Active Shooter Event might be finding and climbing stairs, and then dialing your cell phone and telling someone out loud your exact location. Nurses can practice speaking into a phone clearly and in a controlled manner while breathing at an accelerated rate from a brisk walk, run, or stair climb; they can test and challenge each other with random quizzing by unexpectedly asking a colleague exactly where they are located; and they can follow that up with asking them where they would move to for the greatest level of safety. These seem like extremely simple things, but it is practicing them in advance that is the secret to making them ‘simple.’ Once you know you can do these things, it creates a positive cascading effect of believing in yourself and your ability to complete these tasks under stress. Like anything else, the more we practice something, the better we get at it.”
McRoberts give these final tips to give nurses guidance as to what they should and shouldn’t do in an Active Shooter Event:
- Look for the threat and then react to it; don’t panic and freeze.
- Remember that this event will happen quickly and will only take about two minutes, but you will perceive it to be very long and protracted.
- Rely upon your new mindset, knowing that you can function through this event.
- Know exactly where you are (your surroundings) and where you must move to for safety.
- Know what to say to communicate to others, including what may be required by pre-established agency/facility protocols.
- Know that you may have to move more than once.
- Don’t try to negotiate or plead with an active shooter; you are better fighting for your life, not begging for your life.
- Know in advance that you may have to move away from patients temporarily to survive so you can be there to help them later.
- Know that when law enforcement gets to the scene, they will move quickly past everyone and everything to get to the shooter and stop them; this may mean moving past injured people, patients, colleagues, and you.
The financial challenges of those in the current “sandwich generation” (generally those in the GenX generation), can derail retirement plans and the emotional fallout of being stretched so thin also takes a toll. When you’re in the middle, self-care can help you manage all the demands.
Journalist Carol Abaya, who has studied aging and care giving, even went a step beyond the term sandwich generation. With a nod to the complex and complicated situations in so many families, she coined some new phrases for this kind of caregiving.
- Traditional: those sandwiched between aging parents who need care and/or help and their own children.
- Club Sandwich: those in their 50s or 60s, sandwiched between aging parents, adult children and grandchildren. OR those in their 30s and 40s, with young children, aging parents and grandparents.
- Open Faced: anyone else involved in elder care.
No matter where you fit, you are going to feel some additional stress in trying to take care of the needs of so many people. Here are some tips to help.
Talk to Others
You aren’t the only person going through what you are going through. Other people who are also juggling so many things will have some tips that will help you navigate these sometimes confusing paths. Whether it is a friend, a coworker, a faith leader, or a professional, talking with others and sharing experiences helps.
Getting help doesn’t always mean paying for help. Look for assistance by asking what’s possible. If they are old enough, get your kids to help with tidying up your parents’ home. Enlist coordinators to help set up driving help—those can come from senior centers, volunteer organizations, or even the medical community. If you can afford help, paying for someone to do yard work or clean the house can be a huge time saver, as can grocery delivery services.
Try to Care for Yourself
In the middle of so much caregiving, any time for you seems impossible. And sometimes, it will be impossible to take care of your own needs when so many others are depending on you. But if your tank runs dry, there’s nothing left for the people you need to help or for the career you love or for the relationships you want to nurture. Because burnout is damaging and pervasive, it’s important to recognize when you need a break and what that means for you. A break can encompass a whole range of experiences—figure out what will bring you relief. Even the smallest break can offer huge benefits in recharging your outlook,
The Usual Suspects
It is repeated so often because it’s important. The trifecta of nutrition, sleep, and exercise keeps you on an even keel. Look at your pillars on a weekly basis so you don’t feel like each day has to be perfect. Overall, try to fit in some more movement, more sleep, and nutritious food that gives you energy. Being aware is half the battle and the small efforts add up.
Being in the sandwich generation means you are taking care of the needs of many people all while trying to juggle your own family and work life. It’s not easy, but taking care of yourself is an essential part of managing this time successfully.
Are you part of today’s “sandwich generation?” If you are in Generation X (born between 1965 and 1979) you very likely are. And if you are, a recent study notes that you might want to pay extra attention to your retirement planning.
A recent study by the Employee Benefit Research Institute, found that Generation X-headed families are more behind on their retirement than previous generations were at the same life juncture.
Each generation goes through the time in their lives when they are likely caring for parents while also caring for children at home, often paying for college expenses, and working at the same time. All of this happens right when retirement planning becomes more urgent. The squeeze from all sides, hence the “sandwich” name, creates all kinds of pressure and stress.
And while many in the sandwich generation don’t bemoan caring for those they love, the emotional, physical, and financial struggles that come with it are very real. Some families have three generations (or more) under one roof and others are trying to balance parents who live nearby with kids at home. Either way, there is a lot of running around and reshuffling priorities depending on health, living situations, and financial needs.
Some of the biggest findings showed that the best off GenX families showed remarkably little discrepancy with prior generations. But those who were at the biggest financial disadvantage had such a drastic reduction that it influenced the study results overall.
These are findings that are worth noting for many in GenX. Although GenX sandwich generation families might have some retirement accounts in place, there are other important factors that are missing. For instance, the study found, “Generation X families in 2016 were more likely to have an individual account (IA) retirement plan than families of Millennial and Baby Boomer generations, but they were less likely than the Baby Boomer families to own a home or have any type of retirement plan.”
That means they are losing money to rent instead of investing in a home that would give them equity and hopefully additional funds upon selling the home. But the market crash of 2008 threw many in GenX into a financial turmoil, giving them less job stability and income. Without either of those, a down payment and loan approval for a home were out of reach.
And while many in the new sandwich generation in GenX are on track for retirement, the unexpected financial challenges of caring for parents and kids can take a big chunk out of retirement savings. Parents may require extra funds for health challenges, home repairs, and living expenses, particularly if they did not have enough put aside. And as children go to college, tuition expenses can be more than what was planned for.
What can families do? Even in an emergency, it’s important to remember that retirement can’t be put off. You will reach retirement age no matter what and being financially prepared is a gift to you and to your children who will not have to support you. Your savings make take a hit or drop off as you help your loved ones financially, but keeping your eye on the goal of growing your retirement will help.
Culture is everywhere—and it defines almost every aspect of our lives in one way or another. That can be true across a variety of dynamics, including how someone functions within a family, relates to others, or responds to stress. Nurses encounter patients and families with myriad cultural influences every day. That’s why understanding and practicing cultural sensitivity is so important for building relationships and providing excellence in patient care.
The Importance of Building Relationships
In any setting, trusting relationships are important. However, some patients may hesitate to trust health care providers because of several factors—such as a history of discrimination, disparity in representations of diverse people as care providers, and lack of recognition of the particular challenges that some patients face.
According to a report from the American Psychological Association (APA), individuals with low incomes or those from racial or ethnic minority groups are more likely to experience severe stress than others, a dynamic that can lead to poorer mental and physical health outcomes. Unfortunately, such individuals may be less likely to pursue medical care because of financial concerns or fear of discrimination from a provider. However, if clinicians learn to build trusting relationships, then those who need care may feel more comfortable in accessing it.
The Role of Cultural Sensitivity
Previously referred to as “cultural competency,” cultural sensitivity requires that nurses possess the needed skills to affirm diversity and embrace the values of people from different social or cultural backgrounds. Practicing cultural sensitivity is essential to building relationships, since it helps nurses step outside of their own perspectives to better understand the unique needs of the patients and families for whom they provide care.
The shift in language from “competency” to “sensitivity” underscores the role of culture across an individual’s life and care continuum, and the need for clinicians to recognize the importance of this dynamic. Thus, when nurses become educated about different cultures, they are better equipped for building relationships with patients and families, which can help to improve outcomes of care.
Strategies for Building Trust
In addition to learning about different cultures, nurses can make use of empowering strategies to help patients and families feel understood and accepted; such strategies are included in The National Education Association’s Diversity Toolkit:
- Use inclusive language in written and verbal discussions.
- Ask each client for their preferred pronouns, even when you feel sure of their gender.
- Take time to learn proper pronunciation of each person’s name.
- Ask for permission before touching or hugging each person.
- Learn cultural customs for any community or group with whom you are working closely.
- Encourage patients to have a family member accompany them if privacy is needed.
- Offer to translate information or rewrite it in more understandable terms if someone is having difficulty reading or understanding complex medical information.
- Know the cultural or diversity-related resources in your community.
To learn more about the role of cultural sensitivity in building relationships, see “How To Be Culturally Sensitive Working with Clients with a Range of Identities.”
Quite often a nurse will ask me how to become engaged in the health policy arena. I frequently advise nurses to get involved with their professional organizations as a start. Many nursing organizations have an advocacy and legislative agenda and are oftentimes engaged in advocating on behalf of patients and the profession. Here, we share a conversation with Aney Abraham, DNP, RN, NE-BC, who is a founding member and current president of the Indian Nurses Association of Illinois (INAI). Abraham discusses the origins of her organization and current issues they are addressing.
With regard to legislative issues, Abraham highlights a piece of legislation that was introduced during the 115th Congressional Session. The proposed legislation “H.R. 3592 South Asian Heart Health Awareness and Research Act of 2017” aims to address the high rate of cardiovascular disease in the South Asian community. And while the proposed legislation did not gain much traction during the 115th Congressional Session, the INAI is hopeful that the original sponsors of the proposed legislation will reintroduce it and continue to seek funding to support research focused on finding solutions to the high rate of cardiovascular disease in this population. This targeted approach to improving the health and well-being of this population takes into consideration cultural factors that may influence health status and calls for early intervention and treatment through education and awareness.
As president of the Indian Nurses Association of Illinois (INAI), can you share with me a bit about the INAI, its origins, its mission, and membership?
The Indian Nurses Association of Illinois was established in 2002. I was a nurse with about 18 years of experience at this time and among one of the few nurses that thought of this idea of forming a professional organization for nurses of Indian origin. There were many reasons for starting this organization. The first and foremost was that Indian nurses who immigrated to the U.S. faced many challenges as they transitioned in the United States.
At a Glance:
South Asians and Heart Disease
- South Asians are one of the fastest growing ethnic groups in the United States.
- Family origins mostly from: Bangladesh, Bhutan, India, Nepal, Pakistan, and Sri Lanka.
- High cardiovascular prevalence not readily known due to lack of data.
- Research examining heart disease in Asians in general lacks subgroup analyses.
- Possible contributing factors include early onset of diabetes, cholesterol abnormalities, westernized diets, and lifestyle.
Source: American Heart Association
For a more detailed discussion of heart disease in South Asian populations, please see the American Heart Association’s Scientific Statement.
Foreign nurses become minorities overnight having little or no orientation to the country or health care facility that they worked for. We realized that many nurses were eagerly anticipating the birth of this organization and thus successfully established the organization in 2002.
The mission of INAI is to identify and meet the professional, cultural, and social needs of nurses of Indian origin. In addition to our mission, our purpose is to ensure that we provide representation and interact with other professional organizations as well as promote cultural awareness by communicating the uniqueness and diversity of the Indian culture.
What do you believe are the top nursing issues impacting our profession today?
Job safety is important to all professions; nurses are not exempt from working in unsafe environments. One of the top nursing issues impacting our profession is workplace violence. Every day, our nurses are impacted by violence perpetrated by patients, their family members, and visitors. Incidents that may start small can spiral out of control within minutes. Even though nurses are very familiar with incidents of violence, research seems to suggest that workplace violence is increasing. We certainly hear about these incidents through TV, print media, and reports from nurses.
The second issue that is impacting our nurses is stress and burnout. Nurses are on the front lines providing direct nursing care, advocating for patients’ medical needs, comforting patients/families, and working with a multidisciplinary team to ensure that patients receive safe high-quality patient care. Stress and busyness can easily escalate with the demands that are placed on nurses daily.
As nurse leaders and professional organizations, we need to work on finding ways to address awareness and ways to mitigate these issues that are facing our profession.
What are some of the top policy or regulatory issues impacting the Indian nursing community?
One of the issues impacting nurses of Indian origin is abusive employment practices. To address this, in 2008 the ANA released the Voluntary Code of Ethical Conduct for the Recruitment of Foreign-Educated Nurses to the United States. The code addresses minimum fair labor standards, civil rights, age discrimination, equal pay, and family/medical leave.
Another issue impacting Indian nurses (majority of which are of South Asian descent) is that they suffer from heart disease, high blood pressure, and diabetes too frequently and too early in life. Compared to other ethnic groups, South Asians are four times more likely to have heart disease, experience heart attacks 10 years earlier in average, and have a 50% higher mortality rate from heart disease. To address this, in 2017 Rep. Pramila Jayapal (D-WA-7) proposed H.R. 3592 “South Asian Heart Health Awareness and Research Act of 2017.” This is a very specific piece of legislation targeting Asian Americans.
What is the overall purpose of this legislation, and why is it important to you as a nursing organization and to the Asian community at large?
Representatives Pramila Jaypal and Joe Wilson co-sponsored this bill to raise awareness of the alarming rate at which the South Asian community is developing heart disease.
The overall purposes of this legislation are to:1) promote heart healthy eating among Asians; 2) conduct research to understand why South Asians are at an increased risk for developing heart disease and; 3) develop educational tools about heart disease for South Asians.
This legislation is important to us as a nursing organization and to the Asian community at large. The members of the Indian Nurses Association spend a tremendous amount of time offering free community services in the Indian community. Our advanced practice nurses spend time on the weekends visiting the various churches conducting health fairs, offering lectures, and educating the community on the dangers of heart disease and diabetes. Legislation that supports research will enhance our ability to learn more about the root causes of the high risk for the Asian community and prepare us to share lifesaving information with the community at large.
Are there any updates on this given this did not pass out of committee?
We will continue to monitor where this is going as the original sponsors are committed to raising awareness and supporting research in this area.
What are some of the ways that your organization has engaged in community education regarding Asian American cardiovascular disease?
Every year we host a minimum of three community health fairs and lectures in the Indian community. Our members, many of which are advanced practice nurses, have the skills, expertise, and knowledge to effectively lead these health fairs. In addition to the health fairs, we offer free BLS and ACLS certification.
How does INAI prepare its members to be influential advocates in the policymaking arena?
INAI invites public officials and elected officials to speak at our meetings and conferences. For example, some of our guests in the past have included, at that time, Senator Barak Obama before he went on to become President of the United States and Dr. Ann Kalayil, Bureau Chief, Cook County Bureau of Asset Management. Dr. Kalyil was the former President of the South Asian American Policy and Research Institute.
Additionally, members stay informed through educational seminars and educational offerings posted on social media outlets such as Twitter and Facebook. We also stay abreast of issues by following the legislative agenda of the American Nurses Association.
Are there other policy issues that are a part of your health policy agenda?
Many of our members are advanced practice nurses. Thus, we support the policy agenda of the National Association of Clinical Nurse Specialists (NACNS). Their priorities—including nursing workforce issues, health care reform, and health information technology—resonate with our legislative priorities.
The Indian Nurses Association is an organization of about 200 members. We can be more impactful when we combine our voices with other nursing organizations to enhance our policy advocacy on behalf of patients and the profession.
If you had to offer advice on why nurses should be engaged in advocacy and policy advocacy on behalf of patients and the profession, what would you say?
Nurses instinctively advocate for their patients. Equally important is for nurses to engage in legislative and political advocacy. This is needed to advance the profession and patient care. It is important for the voice of the nurse to be heard when any new legislation or bill is being introduced. An example of a recent bill is SB2151, a bill sponsored by Senator Hastings. This bill is about the Nurse Practice Act language surrounding delegation. Specifically, nurse delegation in community-based settings is of concern. Nursing has to provide the definition of what nursing practice entails, how nursing interventions and tasks can be delegated, and in what care settings the delegation can occur.
Nurses can stay informed on legislation that impacts their practice and profession by following nursing forums like @ANAnurses [and] @RN Action.
To stay engaged or not engaged in policy advocacy is a decision each nursing professional has to make, and he or she must always err on the side of staying actively engaged on behalf of the patients and those they serve.