SurroundHealth Blog

This guest blog for SurroundHealth was written by Tammy Pilisuk, MPH.  Tammy has been a health educator for over 10 years, and prior to that worked in program planning and health policy. She has expertise in aging and disability advocacy, immunization education, and writing and editing to meet the needs of diverse audiences. Tammy loves creating and sharing innovative ways to craft health messages–especially incorporating the power of personal stories.

Advocacy 101

Ever had a health advocacy training? The basics are easily explained: know your issue(s), stay focused on key points, have a few facts, know what the committees the policy maker sits on, tie to a constituent concern, and leave a written leave-behind piece.  For more quite good basic training visit Families USA.

So, are you ready?  I’d say, not quite. Don’t forget “why” your issue is important—and particularly what difference it will make to real people.

Recently, I had the privilege of attending a statewide policy conference sponsored by the National Multiple Sclerosis Society.  I have been a volunteer with this organization for over 20 years. And you might think I’d feel jaded about attending yet another advocacy event.  But that’s not the case. I find it very grounding. Let me explain.

Professional, Personal, or Both?

I have training in health policy and find an incredible personal satisfaction in helping others advocate effectively for issues that impact their lives. For years, my passion was based on my principles to affect change for social and health justice. I also have a personal connection: my mom has MS.  As her condition has substantially worsened, I find myself straddling two roles: health policy expert and affected family caregiver.

It’s no surprise that many advocates find themselves involved in an issue because it affects them personally. When you’re working with others, whether or not you share their same experience, it’s important to capture authenticity in how you’re supporting their cause.  Like each of them, I have a story to carry my advocacy from abstract facts and policy proposals to the realm of real life.

I do often refer to my mom when I’m making a point, like on this public radio opinion piece. And, I remind others that while policymakers can pick apart your budgetary requests, they can never argue with your story.  This is where you bring the head and heart together.

Life Experience: A Rich Source of Inspiration

Whether or not you, yourself are impacted by an issue in the same way that others might be, it may be possible to dig into your life experiences to convert an abstract policy “pitch” into an impassioned plea to help right a critical injustice.

At the national level we see this being done to good effect. Think about how political candidates often use one person’s story to illustrate how their election will make a difference in a real person’s life.

Thinking on Your Feet

Here’s something that came up when I met with a legislative aide to talk about a pending health care bill. The bill was to limit the number of times a health plan can refuse to authorize pain medications for individuals with chronic pain, despite what their physician prescribes (also called “fail first.”). I was prepared with talking points. Making someone go through five medication “failures” before the health plan relents and agrees to honor the physician’s prescription is inhumane. People with MS often have chronic pain. Chronic pain also leads to depression, isolation, and unnecessary suffering.

Good solid arguments. But the young legislative staffer I visited wasn’t so impressed. “Bottom line, you’re asking for a max of two failures, instead of five, right?” he said. But than he added: “We like to do things incrementally at the Capitol. How about 3-4 fails?”

When encountering a seeming callousness to suffering during an advocacy encounter, this is an opportunity to get personal.  Here’s the approach I used.

Spilling My Guts

I talked about myself. You know, I explained, I once had a slipped disc. One time I was getting into my car and became suddenly paralyzed by excruciating nerve pain in my back. I could not move enough to pull my left leg into the car. So there I sat, very still silently crying and wondering what to do. I was quite frankly scared out of my mind. I’m so lucky that after about 20 minutes I was able to get my leg inside the car, drive the 5 blocks home and get on with my life.

The thing is, some people with MS have pain that just won’t stop. Their nerves are out-of-control. It’s not just something that stops after a while. My experience with pain was intermittent and eventually got better. It’s hard to imagine how I would have coped for weeks on end with the debilitating pain I had that day. If there were a medicine that could give me relief, allow me to go to work, not lose my job, it would make ALL the difference if I had to endure a maximum of two pain med fails.

The Goal of Connecting

It sounds like a small difference in the abstract, but wait until you or someone you love has to live with pain. Every extra day or extra “medication fail” is a very big deal. And suddenly, I had the legislator’s staffer’s attention. 

Over the years, I’ve been in advocacy meetings where the issue got emotional and I cried—even the legislator teared up.  You may or may not “win” the vote you’re seeking, but once you’ve shared that authentic moment of connecting, in the end, you’ll know that’s what he or she will remember.

To get more tips, resources and information about effective advocacy, and to hear what other health professionals have to say on the topic, check out SurroundHealth, a free online network for health professionals.

This guest blog post was contributed by Dr. Drew Harris, DPM, MPH.  Drew Harris is a public health researcher, consultant and advocate and is the founding chairman of the New Jersey Public Health Institute.

In 1874, this anecdote appeared in the Report of the Health Commission of State of New Jersey:

When the cholera broke out in South Amboy in 1866, the very bed on which the patient died was sold at auction. When a physician had sought in vain for power to obtain it and to use disinfectants, he only saved the town from a fearful risk by seizing the articles and burning them by active and illegal force.

I have used this story in lectures and presentations to make the case for why law and the lawmaking process is essential to public health. I always conclude with two simple questions: If you were this doctor, what would you do and why did he have no other options?
 
The question of whether you’re willing to break the law to protect the community’s health is about the courage of your convictions. It’s easy to be brave in the abstract but how many professionals are willing to put their job and freedom on the line for what they believe is important. Let’s also not forget the courage it must have taken in 1866 to enter the house of a highly contagious patient with nothing but a black bag and a crude understanding of how cholera spreads—no gloves, no mask, nothing.
 
It’s really the second question about why “active and illegal force” was even necessary that is most important. Why did this nameless doctor lack the legal power to protect the community? At that time, the ability of local officials to regulate people or property to protect public health was quite limited. The sale of adulterated foods and medicine was rampant. There were no building construction codes, no regulation of living conditions. Privies and cesspools could be co-located with drinking water wells. Manufacturers dumped their waste directly into streams and rivers with impunity.
 
Dr. Ezra Mundy Hunt, a public health pioneer, used this story about the desperate South Amboy, NJ physician to make his case for an empowered public health system. He led a group of 19th century public health advocates to lobby for a New Jersey state department of health with the authority to use the force of law to improve the state’s health conditions. Ultimately, he was successful in creating a strong state health agency and requiring every community to establish its own local health department. Only by marrying an evolving understanding of how disease spreads through a community with the coercive force of government were these public health champions able to improve health outcomes.
 
Dr. Hunt, et al accomplished their goal by wielding political power and employing what we would now call a “grassroots” and “grasstops” campaign. They had tried unsuccessfully to use scientific arguments to persuade the legislature that more needed to be done to protect public health. After several failed attempts at appealing directly to the New Jersey Legislature, they fanned out across the state to meet with key opinion leaders (local physicians, lawyers, judges and clergy) to describe the benefits of a state-level health department. They promoted the benefits of collective action to address the conditions that led to ongoing and recurrent disease outbreaks. Most importantly, they encouraged these community leaders to engage the local population to contact their representatives in the state capital. It was the weight of this public pressure that eventually forced New Jersey’s political leadership to create the state’s first Board of Health in 1877.
 
The essence of Public Health is political. Without the means to effect change by implementing and mandating best practices, it is just another exercise in pure research. Scientific research develops vaccines against infectious diseases, proves that pasteurization makes milk safe and discovers the link between squalid living conditions and disease outbreaks. But, it’s public policy that turns those findings into action. And, policymaking—the power to enact laws—is inherently political.

Like Hunt and his colleagues, public health practitioners must embrace the political realm and use the powers of persuasion and an engaged electorate to move the levers of power. If we are to achieve our goal of “healthy people in health communities” then we must get our hands dirty. We shouldn’t be afraid to exercise our constitutional right to speak out on issues important to our communities, states and country. As experts, it is our professional and moral obligation to lend our voices to the public debate. If we confront institutional barriers that prevent us from speaking out then we must work directly to overcome them or indirectly through organizations and people who can. We must become community leaders by educating our colleagues, neighbors, patients and clients about local health challenges and opportunities and rally them to the cause of good public health.

Like this blog post? Check out our other articles in our learning community for health professionals, SurroundHealth.

As health professionals, we all want our patients and communities to take an active role in their health care – to educate themselves about their bodies and medical conditions, and the preventive steps they can take to live long and healthy lives. But what do you do when that patient is a child, the person doing the research is a parent, and what they are reading is actually misinformation linking childhood vaccines to autism?

That’s the all-too-common scenario many health care professionals are finding themselves in, and one a SurroundHealth member recently addressed in a new article, “Trust and Science: How Do We Communicate with Parents about Vaccines.” Apparently the article hit a nerve: it was the most popular article on SurroundHealth last month and has begun generating some lively discussion among members.

“Vaccines have become ground zero for many parents to line-up against science,” writes member Tammy Pilisuk, MPH, a California based health educator. Recent polls indicate that despite overwhelming evidence to the contrary, 1 in 4 parents still think vaccines are linked to autism, and 1 in 10 parents are also delaying or postponing at least some vaccines.

The challenge for health educators, Pilisuk writes, is to really listen to parents’ concerns about vaccines, while also helping them make informed decisions that are in the best interest of their individual child as well as society.

“Vaccines, once hailed as the most successful public health accomplishment of the past century, have become  a curious paradox for people in public health. We’re so used to fighting issues of social injustice and barriers to care for those most disenfranchised. But in this case, the most reluctant parents to fully vaccinate their kids on-schedule are well-educated and typically have plenty of opportunity to immunize. This represents a new conundrum where we need to know how to have a respectful and productive conversation with people who are inherently mistrustful of “western medicine” perceived “toxins” and corporate profit motives. I find this a fascinating challenge. It’s even made me think more about cognitive sciences and why people believe what they believe.”

In her article, Pilisuk highlights a few suggestions for public health experts and the medical community:

• Try to create an environment where the parent is comfortable bringing questions to the doctor or staff.
• Refer parents to reputable websites that cite the most up-to-date research about vaccines.
• Make sure the parent has real – not abstract – information about the diseases the vaccines protect again.

To learn more about talking with parents about vaccines, and to hear what other health professionals have to say on the topic, read the full version of the article on SurroundHealth, a free online network for health professionals.

I recently had the pleasure to speak with Sherri Snelling, CEO and founder of the Caregiving Club, a nationally recognized expert on America’s 65 million family caregivers. During our interview Sherri talked to us about the Caregiving Club, the challenges many caregivers face, and how we as health professionals can go about helping this growing segment of the population.

Sherri, can you please tell us a little bit about the Caregiving Club, and why you decided to start it?

I spent the last 10 years in healthcare, and worked with different organizations seeing the need for caregivers to come together and have one voice. Caregiving is a role that most of us will have to play at one point in our lives, and yet, it isn’t something we would typically self-identify as. I speak to so many CG who say, “Oh, I’m not a caregiver, I’m just a daughter who loves her mother.”

I think former first lady Rosalynn Carter said it best when she said, “you either have been a caregiver, are a caregiver, will be a caregiver, or someone will be caring for you.” When you look at it this way, it’s something that all of us will be touched by at one point in our lives.

Caregivers provide 80% of long term care in this country, they are not professionals, and are not paid. According to an AARP study they represent over $450 billion of value of their care. We need to pay attention to that as a society, and provide them with support.

The Caregiving Club is dedicated to two caregiving areas, consulting and arming caregivers with knowledge.

In terms of consulting, we work with businesses both large and small.  We know that 73% of all caregivers are working and companies are beginning to look at this population, trying to understand who caregivers are and what they need to help them. We consult with those companies to help them understand what those needs are.

We are also very dedicated to providing content. Right now a tipping point is happening in our society with boomers aging, which in turn is creating more and more caregivers.  We felt we needed to elevate the conversation and start a dedicated dialogue, providing solutions and tips for those caregivers. We reach about 8 million boomers a month via blogs for different websites including the Alzheimer’s Association, Third Age, Vibrant Nation, Next Avenue and several others. The blogs become a connection point for different topics and points for discussion for caregivers and their families.

The Caregiving Club has also collaborated with The Monday Campaigns. The non-profit is dedicated to educational campaigns that use Mondays as a milestone to start a new regime, whether new nutrition or fitness plan etc. When I first met with them, they were interested in creating a caregiver campaign, so we created Caregiving Club’s Me Time Monday videos and tips in support of the Caregiver’s Monday campaign. We do several things including informative videos, tips on health and wellness, financial health, and technology use to help caregivers. All of these are available on our website and our YouTube channel.

Additionally we created a TV show called, “Handle with Care” which piloted last year, showcasing different caregiving stories. We bring in a team of experts to help the caregivers deal with the challenges they are facing. We thought the TV show was a great way to reach caregivers, because as the Nielson ratings show us, boomers watch 5-6 hours of TV, and we wanted to provide them helpful tips they are looking for.

Many of SurroundHealth’s members work directly with patients, many of whom have caregivers. What can you tell them about the struggles and challenges that you see caregivers experiencing most often?

I know SurroundHealth members are very much in tune with what I’m about to say, but we see a lot of issues around the sense of isolation. I hear caregivers say over and over, “I just feel so all alone. I feel like I don’t know where to turn for help, and I don’t know how to ask for help.” There is this sense of isolation they experience which can add to increased stress levels and even depression. Often that’s where we start to see the decline in the caregiver’s health.

Another issue we see quite often is around caregivers  losing themselves. Caregivers tend to neglect their own health and wellness needs, and this is particularly a dilemma for the sandwich generation caregivers, who still have children at home but might also have an older parent who they are taking care of. They are literally sandwiched in between these responsibilities all while trying to maintain their own family and work responsibilities. It’s what I call the 3 C’s; the children, having a career, and all of a sudden having to care for a parent. On top of that, where can they find time for themselves? Caregivers know they have to, but how.

The third challenge is finding resources. There are so many good tools and support mechanisms out there, but caregivers don’t have the time to search for them, especially if they are working. If health professionals can become these expert guides by educating themselves on the resources and support that are available for caregivers, this would be a tremendous help for this population.

Studies conducted by the National Alliance on Caregiving several years ago on caregiver health risks, showed that 91% of caregivers are feeling depressed over the situation, so how can we help manage their depression, what are some things that will help uplift them and help them feel less overwhelmed? How do we prevent them from becoming   as illn as the person they are caring? Imagine the impact on our entire healthcare system, if we have caregivers who are as ill as those they are caring for. That is going collapse our healthcare system, so as health professionals we have to find ways we can support them.

Are there any signs that the health professionals can look for when working with patients, to see whether the caregiver isn’t doing well or is overwhelmed?

There are actually a couple of tools out there that health professionals can use. One is from the American Medical Association, the other from the Alzheimer’s Association, and while may be specific to someone with Alzheimer’s or dementia, it can still be helpful to anyone, and the tool is called the Caregiver’s Self-Assessment. It’s a series of questions the caregiver answers and then gives back to a health professional to assess. Those tools are really helpful and I would definitely recommend them.

What role if any does technology and social media play in helping caregivers?

Well the wonderful world of the digital age, many companies both large and small are focusing on helping caregivers, understanding aging of America and keeping people connected. For example, Intel and GE came together to create  a division now called Care Innovations, focused on products around remote monitoring. That’s helping the whole healthcare system because now doctors can start making virtual visits, deliver videos, and that information is automatically transmitted to the healthcare team, and that to me is a great solution for many families.

We know caregivers in general are twice as likely to develop chronic illness as a result of prolonged stress associated with caring for a loved one. Since isolation is such a problem, finding support is critical, and there are many online programs and tools that can help with that.  Whether it’s from the Alzheimer’s Association, the Wounded Warrior Project if you’re a caregiver of a veteran, or whether it’s an online community like Lotsa Helping Hands. That’s a free calendar where caregivers can post what they need help with and invite family and friends to view it and sign up for tasks. Technology and social media help to build a “virtual village” of a support community.

Caregivers are also often forced to be what we call para-professionals. In some cases they have to take on nursing skills and need to know things like how to put a blood pressure cuff on correctly. Social media tools like You Tube can help with things like that immensely, with the how-to videos.

Another example of technology that can help ease the sense of isolation for both the senior population and the caregiver, is the Telikin device. It was created for older Americans who may not be as tech savvy, but it’s a touch screen device that automatically goes to Skype, Facebook or other social media tools and allows for quick and easy connection with family members and friends.

In the near future there is a wide range of technology coming our way that will help with our loved ones, giving a piece of mind and sense of security to our caregivers.

 Any last comments to health professionals reading this blog?

It’s really just about understanding the caregiver and their role as a member of the healthcare team. They are the person who influences the decisions, and helps to care for their loved one. As we all know when someone is diagnosed with a condition, it is not just that person who is affected, it is the entire family and particularly the caregiver. Be there to support them.

We are excited to announce that our online community for health professionals, SurroundHealth, has reached a milestone– the 1,000th member mark!

Ever since our launch in April 2011, we have gotten positive feedback from our members — the heart and soul of our community, and are thrilled to be fulfilling many of their professional needs that we first heard about during our initial needs assessment, and then again from our July 2011 member survey.

SurroundHealth is a new kind of healthcare social network where health professionals from different backgrounds come together to learn from one another’s expertise, share resources, and stay current on best practices. It is a one-stop destination for information, and a springboard to get you started on your research.

The most popular topics on our site are health communication, behavior change strategies, health literacy, educational technology, medication adherence, health literacy, and healthcare reform.

One of the fastest growing categories of our membership is healthcare extenders. They include patient-focused professionals as well as public health folks, including certified diabetes educators, nurse practitioners, registered dietitians, certified health education specialists, and social workers, who are all very important to the delivery of positive health outcomes.

To learn more about our site, check out the infographic below.

Adding to the excitement, early this year we were named the best online community of 2011 by Kentico CMS, a Web content management system which powers SurroundHealth.

This year, we are looking forward to seeing how the community will evolve as we continue to get feedback from our members, and enhance the site to best meet members’ professional needs. Some of our plans include providing opportunities for our members to earn honoraria through content contributions for writing blogs and articles and becoming a SurroundHealth Ambassador. Some other features we are hard at work on include the ability for members to set up private communities, enhanced search and organize functionality, and many others.

What an exciting journey it has been, and we are looking forward to seeing where 2012 will take us!

If you’re not a member yet, join us at www.surroundhealth.net. Membership for health professionals is completely free. With your feedback we can create an even better community to meet your needs.