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Speaking Up: Let Patients Have a Say

One of the main tenets of patient-centered care is giving patients more control over their health and health decisions made on their behalf. Patients have a clear and important role in their own care through a concept called “patienthood” — the self-management behavior that ensures we either give to ourselves or get from others the care we need to manage our health risks and medical problems.

Linda Barlow

Linda Barlow

On the surface, patienthood seems like a simple concept: our body, our health, our decisions. What might be right for the patient next door may not be right for us. At one end of the spectrum, patienthood may involve strategies like eating right and exercising to avoid problems related to obesity. At the other end of the spectrum, it may involve saying “no” to certain suggested treatments, as I did when I opted not to have chemotherapy after my breast cancer operation.

According to a report from Kaiser Health News, in many hospitals and clinics around the country, health care professionals simply tell patients what treatments they should have, or at least give them strong recommendations. But at UC San Francisco, a formal process called “shared decision making” allows patients to work with doctors to make choices –regarding their care. The approach has become a model for other programs around the country.

The report mentions a stumbling block to this approach: many patients aren’t accustomed to speaking up. Even the most engaged or educated patients may defer to their doctors because they are scared, they don’t want to be seen as difficult or they think the doctor knows best.

Doctors who recognize this stumbling block may want to take a cue from one family doctor profiled in the Washington Post who, when faced with a medical conundrum involving an elderly patient, pushed aside talk of possible treatments and asked the patient a simple question: “What are your goals for care, and how can I help you?”

This particular patient wasn’t looking for a cure. He simply wanted to live out his remaining days at home without worrying about falling. So the doctor put together a hospice and physical therapy plan that let him do just that.

Patients speaking up. Doctors asking the right questions…and listening to the answers. Patients and doctors deciding together on a course of care or treatment. The concept of patient-centered care cannot be fully realized until everyone involved has a say.

Have you ever played a role in deciding on your own course of treatment? Or do you typically hesitate to speak up to your health care providers? Let us know in the comments section.

The Current Perspectives of Palliative Care

Last Monday, Dr. Linda Sutton gave a speech on palliative care at the National Comprehensive Cancer Network Summit on Patient Advocacy.  A subset of healthcare commonly misunderstood, palliative care is no longer just end-of-life care.

What is palliative care? How is it different from hospice?

 Dr. Sutton: There are many definitions of palliative care –CMS’ [Center for Medicare and Medicaid Services] is based on how palliative care is paid for; while the World Health Organization’s, is broad and inclusive but complicated and characterized by what palliative care is not.  The definitions that have made the most sense to me and my patients are those definitions that emphasize what palliative care does – alleviate the multi-dimensional suffering of patients with serious and chronic illnesses.Palliative Care Diagram

One way to help explain the difference between palliative care and hospice is to use a diagram:

All care provided by hospice is palliative care, but only a small proportion of all the palliative care provided is hospice care.  Hospice is largely defined by the CMS criteria for eligibility; most notably that patients have a life expectancy of 6 months or less if the disease runs its usual course.  That has largely limited the applicability of hospice. Palliative care is not constrained by how insurance companies or Medicare define the care.

 

Why does this misconception exist with palliative care? 

Early on, as palliative care emerged as a medical specialty in its own right, the effort was to distinguish palliative care from other disciplines and approaches.  Palliative care advocates spent a lot of time and energy emphasizing what palliative care was not; rather than focusing on what it was.  Some of this was driven by the negative connotation of ‘hospice.’  The unfortunate reality is that hospice care is inextricably linked to dying.  Hospice provides terrific palliative care that focuses on the patient and the family as the unit of care, but does so explicitly for those who are dying.  Palliative care advocates wanted to offer that care to others, who might not be dying, but still faced high levels of stress – both physiologic and psychosocial due to serious medical illness(es).

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How do you think we can change the perception of palliative care? 

I think the only ways to change perceptions are through education and experience.  Clearly more education of both our clinical providers and the public in general is required.  But, what will be more important, in the final analysis, is what experiences do patients and their families have with palliative care?  If good patient experiences are shared, more people will know about and seek help from palliative care specialists.  However, it will be a challenge to significantly increase patient experience over the next few years, given the shortage of clinicians skilled in palliative care.

 

Do most doctors know the benefits? Or do you need to see a specialist?

I am not convinced that most physicians yet see how palliative care specialists can help their patients.  In many locations or places of practice, there is not a palliative care specialist immediately available – the closest specialist may be hundreds of miles away.  That is important because a large proportion of the populace in need of palliative care really cannot travel to see a specialist due to the burden of their disease or illness.  One consequence of this is that, if physicians cannot see the benefits of palliative care first-hand, it is difficult to understand how their own patients might be helped.  Furthermore, much of the palliative care services that are offered are inpatient services and not available for outpatients.  With fewer doctors going to the hospital on a regular basis to see patients, they again miss the opportunity to see the benefit of palliative care services.

We may need to develop more creative ways of delivering palliative care – perhaps using telemedicine or other technologies.

 

Do all patients who need palliative care require a ‘palliative care specialist’?

This is complicated, because no two patient situations are alike.  But, I don’t think ALL patients with serious illness need palliative care but they should have access to clinical providers with training in palliative care – that might be a social worker, or nurse specifically trained to address the palliative needs of patients.  A good clinician working with others trained in palliative care –even if the clinician is not ‘board certified’ in palliative care, can alleviate significant amounts of patients’ distress.

 

If you think that you or someone you love needs palliative care, what is the first step toward getting it?

 Always, start with your physician.  Contact your local hospital, if there are palliative care specialists in your community, they are likely on staff at your local hospital.  Your local hospice might also have a palliative care specialist on staff as well or can help with locating those resources.

 

Did you know that palliative care wasn’t just end-of-life care? Would you consider it for yourself or a loved one, or is this misconception still too strong? Tell us about your views on palliative care, and if it changed, in the comments section!

Dealing with Breast Cancer Stresses: Supporting the Supporters

 

Mammogram photoWith one in eight women developing invasive breast cancer in her lifetime, most of us know at least one person who has been diagnosed. Each October, Breast Cancer Awareness month in North America highlights the excruciating experience of this disease and its courses of treatment.

In a previous RealWorldHealthCare.org article, I described the emotionally and physically burdensome aspects of cancer, for the patient. But what can easily be overlooked are the enormous challenges for caregivers, who may be at increased risk of depression, anxiety, and sleep and cardiac disorders, as well as higher blood pressure and reduced immune function.

Unless the caregiver is either a survivor or mental health professional, supporting another through bona fide trauma may exceed one’s emotional capacities. The patient’s psychological responses, let alone physical challenges, might often feel like “too much.” Caregivers’ ongoing recommitment to their own health—including sufficient sleep, regular exercise, healthy diet, and stress-management approaches—may attenuate the enormous strain of caring for someone with breast (or other) cancer. The family caring for me during my treatment were not always so diligent when in taking care of themselves, and even through my own required focus on my own healing, I was keenly aware of the resultant wear on them.

The justifiable focus on the patient may steer caregivers to ignore seeking psycho-emotional support of their own; but doing so puts them at risk for clinical levels of distress. Counseling or peer groups can play a key role in alleviating emotional burdens unique to those in supportive roles. (Local chapters of Gilda’s Club, and its now umbrella Cancer Support Community, offer caregiver options globally.)

I didn’t join a support group until years after my initial diagnosis. Retrospectively, I would have done so from the very start of my own “cancer journey”, in part to gain support for myself, but also to lighten the challenges on my support team. Caregivers would do well to encourage patients/survivors to join dedicated support communities also, to expand the patient’s helping network.

Since patient supporters genuinely want their efforts to be effective, it may be useful to be aware of needs identified by breast cancer patients. From an informal, small survey of survivors, I identified some common themes caregivers may not always think of:

  • Financial assistance. Out-of-pocket costs alone may exceed $700 monthly for cancer patients—even for those with insurance. A fundraising campaign through Facebook or other social media site can help alleviate an enormous burden that significantly compounds breast cancer-related stress.
  • Physical company and gently supportive dialogue. Cancer organizations offer guidance about how to communicate with a survivor/patient, including things not to say.
  • Assistance with appointments and tasks, including filing and organizing of medical records and insurance forms. Lotsa Helping Hands or Google calendars can help volunteers coordinate assistive tasks across the patient’s care giving network.

Several cancer organizations outline additional tips about how to truly be there for a breast cancer patient. While it may seem obvious, the often-overlooked well-being of caregivers is also of paramount importance— both to sustain themselves during prolonged periods of giving aid, as well as promote the healing of all affected by the challenges of breast, or any other, cancer.

Are you in need of assistance with cancer treatment costs? Several copay foundations make funds available to offset copay expenses for cancer patients.

Have you ever been a direct caregiver for a cancer patient? Were you aware that not only cancer patients, but also their caregivers are at increased risk for clinically relevant levels of distress? Tell your story or share your thoughts in the comments section below.

 

Artist Turned Health Advocate: An Interview with Regina Holliday

David Sheon

David Sheon

By David Sheon

Artist Regina Holliday uses her talent to change the way health care professionals see and experience their patients.  Her innovative approach to draw attention to the needs of patients to be treated as individuals has already impressed thousands of health care practitioners.

 

When her husband suddenly became sick in early 2009, she saw the flaws in the health care system first-hand.  Now, she uses unique art to advocate for patients and push for changes in health care.  Holliday, joined now with other artists she’s inspired, paints patient stories on the backs of blazers and lab coats, so that they can be worn to medical summits and conferences. When doctors, policy makers, and hospital administrators see these jackets, they are reminded to put patients first and view each for their own unique health history.

 

Through her ambitious initiative, “The Walking Gallery,” Holliday and other artists have painted over 300 jackets, each worn by a proud patient, family member, or friend.

 

Patient advocacy needs fresh ideas, and we admire what Holliday is trying to do, so we interviewed her recently.

 

The Walking Gallery at the 2011 Health Innovation Summit at The Kaiser Permanente Center for Total Health
(Source: https://www.flickr.com/photos/taedc/5824507774/in/photostream/)

 

 “Don’t tell me to zip it”- By Regina Holliday (Source: http://reginaholliday.blogspot.com/2012/06/walking-gallery-walks-on-year-two.html)

“Don’t tell me to zip it”- By Regina Holliday
(Source: http://reginaholliday.blogspot.com/2012/06/walking-gallery-walks-on-year-two.html)

RWHC: How did you become interested in health care issues?

Holliday: I became involved in health care after my husband, Fred Holliday, was hospitalized in 2009 and we saw how dysfunctional things could be.  He was admitted to five facilities in 11 weeks. He died in home hospice during the 12th week.  We had trouble accessing his medical record and I became an advocate for patient data access.

 

What issues particularly interest you right now?

I study patient data access, the intersection of art and health, hospital hygiene and national autopsy rates to name a few areas of interest.

 

If you weren’t a patient advocate, what would you be doing?

I would probably still be selling toys at my old toy store and teaching pre-k art.

 

What are you most proud of achieving throughout your time as a patient advocate?

I testified in 2010 to make sure that patient data access was included in Meaningful Use as a core measure. It was.

 

[Meaningful Use is a government regulation that provides incentives to providers to show that electronic health records are being used in meaningful ways by reaching certain thresholds.  The first threshold includes capturing all patient’s electronic health records in a standard format.  The second threshold focuses on increasing the access of medical records to other health professionals, including hospitals, pharmacies, and labs. The final threshold focuses on improving overall public health with better quality assurance, safety, and efficiency of health care by using these health record databases.]

 

What is the greatest lesson that you have learned along the way?

Never give up. Perseverance wins in the end.

 

What is the most important thing that you want our readers to take away from this?

You can do great things even if you are one person.

 

How can our readers get involved?

I highly recommend using Twitter if you are focused on a cause in health care.  Tweets can help you crowd source and crowd fund.  You will make many friends while helping patients.

 

How did the idea for The Walking Gallery come about?

The Walking Gallery exists because Jen McCabe followed me on Twitter on May 30th 2009.  That was the day before I placed the Medical Facts Mural in Pumpernickels Deli on Connecticut Ave.  That was a day when my Fred was still alive and could speak and eat again because of the wonderful care he was receiving in Washington Home Hospice.  On August 20th, she emailed me after I had posted a comment on her blog and asked me if I would paint a series of paintings on the back of her blazers to wear to upcoming health meetings.  I told her I would be honored to paint jackets for her. The art jacket were the first part of the origin of The Walking Gallery.

 

In April of 2011, I went to an event with Ted Eytan, MD at the new Kaiser Permanente Center for Total Health.  I told him the space was so beautiful that we should do a gallery show there.  He said that they would never let us nail into the smart walls to place canvas work.

 

I told him the art would not be on the walls.  We would wear the art and each be a docent of our own lives.

 

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Looking for a great charity to help patients across America to donate to this Fall? Consider The HealthWell Foundation, a safety net for underinsured patients that provides access to life-changing medical treatments they otherwise would not be able to afford. To learn more and donate to patients in need, click here!
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What is your favorite thing about The Walking Gallery?

Every one has a patient story and all are welcome.

 

Do you have a favorite jacket?

No. I love each for its unique story.

 

We noticed in your video that other artists are encouraged to paint these medical stories for The Walking Gallery, what can we do to help to inform other artists to join in this effort?

It is my hope that people will watch [this video] and paint the stories of patients far and wide.

 

What are you hoping The Walking Gallery will change?

I hope that when members of The Walking Gallery meet people they talk [about] the most important moment in their life and then that reframes their entire conversation on health care.

 

How can our readers have their health story painted on a Walking Gallery jacket?

Reach out to me. I get them done eventually. Otherwise, if you know an artist explain the concept and you can join together.

 

What’s next? Where do you see this going?

Next summer, I am planning a conference that will be a kind of Burning Man meets health care. That will be June 4-6, 2015 [in] Grantsville, MD #Cinderblocks is our hashtag.

Categories: General

New App Makes Diabetes Care Delivery a Whole New Ballgame

A father brings his son to a baseball game. The day is nice, the weather is good, but there’s one problem: the boy has Type 1 diabetes, and they forgot his test strips. Do they leave the game for home or a pharmacy? Do they wing it, risking the boy’s health and trying to manage his blood sugar with his diet?

Nathan Sheon

Actually, they opt for the third choice: HelpAround, a mobile safety net for people with diabetes. The
man can pull out his phone, see that there is another diabetes patient two sections down, and ask for the supplies his son needs. With that, the day is saved.

A story like that is how HelpAround began. Established in 2013, HelpAround was designed to bring people with diabetes together in a common space to provide not just peer-to-peer support, but peer-to-peer care as well. Using new mobile technology, the app provides a highly personalized account of treatment needs and matches patients accordingly with other patients who have similar needs.

According to Yishai Knobel, CEO and co-founder of HelpAround, the service fills in what is otherwise a gray area of diabetes treatment. People with diabetes face a large spectrum of constant health concerns that vary widely in severity. Not having test strips, for instance, might not warrant going to the hospital, but can be very serious for patients who need to constantly monitor their health. With an app like this to fall back on, according to Knobel, people with diabetes are able to live more normal lives knowing that they can get the help they need whenever they need it. “People with chronic conditions have so much going on, on top of their everyday lives,” he said. “Creating this social safety net is really something valuable.”

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Did you know that September is Childhood Cancer Awareness Month? One way to help pediatric cancer patients and their families who are faced with a devastating medical emergency is to donate to HealthWell Foundation’s Pediatric Assistance fund.  Click here to learn more and donate to help families in need.

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HelpAround also provides a less tangible but equally important factor for its patients: a sense of belonging to a community. Though he did not want to disclose numbers, Knobel said that in the early stages of the app’s launch, 85% of requests for help received a response. For people with chronic conditions, knowing that there is a dedicated support base by patients and for patients is invaluable.

“Connecting the right people at the right time in a system can create a wonderful moment of empowerment, support and comradery,” Knobel said.

With use of the app growing, patient groups for other chronic diseases have also begun to discuss using technology like this. With communication technology advancing and a growing call for more patient-centered solutions to health issues, Knobel believes that technologies like HelpAround will allow patients to manage their own health needs more efficiently.  Perhaps most important, the app helps patients stay compliant with their treatment schedule.

“We want to really give the patient a full support system, (helping them) on the go, focusing on their needs, to better manage their health care,” Knobel said.

Have you ever used HelpAround or a similar technology? What was your experience? What does this mean for the future of care-delivery and treatment compliance? Let us know in the comment section!

Categories: Access to Care, General

Patient of the Month Revisited: Sharon Harris Survives Lupus and Pays It Forward

Real World Health Care is on its summer break. During this time, we will be revisiting some of our Patients of the Month. Please enjoy these inspiring stories from the patients we serve.

Sharon Harris remembers February of 2002. She remembers where she was, what she was wearing, and what she was feeling. Most of all, she remembers the day she was diagnosed with lupus.

Sharon Harris

May is Lupus Awareness Month. Lupus is a chronic inflammatory disease that occurs when the body’s immune system is unable to distinguish between foreign illnesses and the body’s own tissue and organs. Inflammation caused by lupus can affect joints, skin, kidneys, blood cells, brain, heart, lungs, and other organs. Although there is no cure for lupus, there are numerous medications that can alleviate its symptoms.

Sharon had just graduated from Florida A&M University in Tallahassee when she received her diagnosis. “I was 22 at the time, fresh out of college,” Sharon said. “You’re taught while you’re growing up to learn your manners, respect your elders, and get a good education. No one tells you about an autoimmune disease that you will have for the rest of your life.”

Nor had anyone told her what having lupus would entail. “I immediately went into battle mode,” she said. “I had graduated from college. I had traveled 1200 miles from my family to make my journalism degree happen, and I was going to fight.”

“But, as soon as I got my fight on, that’s when all the pain started.”

Sharon experienced a flare-up of symptoms. It would be an understatement to say that the rest of that winter was difficult for her. Her hair began to fall out. She suffered from constant fatigue and pain. In the month of February alone, Sharon lost thirty pounds.

After beginning treatment on several different medications, Sharon started feeling better by that summer. One Wednesday during a Bible study, Sharon was asked what she would do if it were her last day on Earth.

“I said I wanted to see the world,” Sharon said. “Because if lupus was going to take me out, then it was going come and find me in Paris on the Eiffel Tower or on a beach in the Virgin Islands.”

By chance, Northwest Airlines (now Delta) had put out an ad to recruit flight attendants. It was a dream job for Sharon. The job provided her with better insurance, and on her off days she could fly to any location on Northwest’s roster. Just as she had hoped, Sharon got a chance to see the world. Amazingly, Sharon started to find that her experience with lupus was helping her have a healthier mindset. “It really made me think of life in a whole different way, and just literally live. Just really get out there and live,” she said.

Sharon eventually moved back to Tallahassee, opening an eyelash parlor and holding down an office job. At that point, she experienced another flare-up. “In October in Tallahassee it is still 100 degrees outside, and I was wearing a wool coat,” Sharon said. “I was so sick.” Sharon packed up and returned to her hometown: Detroit, MI.

Now, too sick to work and without a job, Sharon did not have health insurance. The lupus was attacking her kidneys and the medicine that she was prescribed cost upwards of $3,000 for a month’s supply. Despite pinching pennies to afford her daughter’s medication, Sharon’s mother was willing to refinance her house to save her only child’s life.

That’s when Sharon’s luck shifted. One day, she visited a local lupus organization with the intention of buying a t-shirt, and she ended up walking out with a new job. Her new public relations position did not include benefits but being employed allowed her to purchase health insurance.

Although she had insurance, her share of the payments for her four medications was unaffordable; one of the therapies alone cost more than $1,000 per month. That’s when Sharon found out about the HealthWell Foundation from a Google Alert. HealthWell is a nationwide non-profit providing financial assistance to insured patients who are still struggling to afford the medications they need (and sponsor of this blog).

“Literally, HealthWell saved my life,” Sharon said. “I didn’t have to incur any debt, my mother didn’t have to refinance her house, and HealthWell saved the day.”

SharronHarris2

And Sharon wanted to save the day for others like her. She has become a leading activist for lupus awareness, starting her own advocacy group called Lupus Detroit, which offers lupus patients emergency grants. Sharon points out that there are two colors that are used for lupus awareness, orange and purple. She opted for orange for her organization because the color is “louder” and garners more attention. “Lupus needs all of the attention that it can get,” Sharon said.

Sharon is currently in remission and has been doing well since receiving a grant from HealthWell in 2011 that allowed her to afford her medications. “I was inspired by the work that HealthWell does to help people with their medications,” she said. “I just don’t believe that someone should have to choose between paying for their medication and feeding their children.”

And neither do we, Sharon. Keep up the excellent work.

If you are inspired to help, consider raising awareness during Lupus Awareness Month and showing your support. Here are some suggestions:

  • Make a donation to HealthWell’s SLE Fund in honor of a family member or loved one who is battling lupus.
  • Celebrate World Lupus Day on Saturday, May 10th.
  • Put on Purple on Friday, May 16th and visit The Lupus Foundation of America’s website at www.lupus.org to learn how you can show your support.
  • Find your local Lupus Foundation of America chapter to learn about activities in your area.

Has lupus touched your life? Do you have plans to show support during Lupus Awareness Month? Share your story in the comments section.

Learning About Multiple Sclerosis (MS) on the Internet: What Works and What Doesn’t?

If you have multiple sclerosis there is a lot that doesn’t work. And what isn’t working is both unpredictable and constantly changing. MS affects everyone differently. And it’s a very wide range of different. While one person may have sensory issues (perhaps a leg is always numb), another person may have movement issues (like muscle weakness or spasticity), and yet another person may be unable to leave bed. You may even know someone who has MS and not realize it. That’s how variable this disease can be.

aghs web

Amy Gurowitz

It’s because of this variability that learning about the disease can be really tough. As you can imagine, learning about what may never happen to you can create tons of anxiety, and this emotional state is not conducive to learning and empowerment.

What works and what doesn’t when trying to learn about MS on the Internet is like a moving target. What a person needs to know changes as the disease progresses over time. And while anxiety is common for the newly diagnosed, even people who have been living with MS for many years go through changes in both the everyday symptoms and the course of the disease.

It’s also important that those who care about a person with MS know what is happening to their loved one so that they can be supportive and understand what he/she is going through. It’s hard enough to live with this disease; to be doubted brings the stress to a whole new level.

The Internet has helped people who are affected by MS in many different ways. Through social networking and the most current information about the disease, the online MS community is an active and interactive space that can help even those who are living with very limited mobility to become informed e-patients and advocate for themselves. And that’s very important.

But the existing websites (and there are more MS sites than there are noises in an MRI tube J) don’t go as far as they can in helping people with MS learn all that they need to. The sites that provide information can’t meet an e-patient’s individual learning needs or consider the emotional state they are likely experiencing. It’s no secret that learning about MS (in a meaningful way) is critical while coping with MS. It’s good to find control – considering MS is all about losing control – where you can.

When I was diagnosed with MS in 1988, it was long before the Internet was available or the FDA had approved any disease-modifying drugs. I was flailing. It was the Stone Age in isolation compared to the connectivity we have today, and I struggled to learn about my version of MS using printed materials and support groups, both of which triggered so much anxiety and fear it was, in and of itself, immobilizing. I vowed to avoid information and just wait and see how my MS would play out. Looking back, it’s clear that this was my only choice at the time.

Then the Internet came to be, and everything changed. Well, not everything.

In 2006, I got my Masters in educational design and studied cognitive science and learning theory. I had an epiphany. There is a way to use the existing Internet technology to make for a personalized, self-directed learning experience that greatly reduces anxiety.

That’s when I founded MSSoftServe, a non-profit organization that aims to revolutionize how patients learn about their diseases on the Internet. The vision is that people with MS will be able to create a web space that is all their own, ensuring that their emotional and intellectual needs will be considered as an individual person, rather than taking the cookie cutter approach that current information sites offer. The site will be personalized so that people with MS will be able to learn about their unique version of MS their way. By establishing preferences, people will be able to control the information they receive. It will be a site like no other and, once produced, it will take full advantage of the capabilities the Internet offers.

Today, I know that change is possible for the 350,000+ Americans who have been diagnosed with MS and the 200+ individuals who are newly diagnosed every week. There is no reason that people who have a disease like MS should feel the same way I did when I was diagnosed 26 years ago. MSSoftServe will give patients what they truly need, not what someone else thinks they do.

Bringing MSSoftServe to life is no small task. Meeting the diverse needs of the MS population requires more content production and more complex site design than other websites. Through www.mssoftserve.org, we are spreading the word about the initiative, raising the required funding, and reaching out to the MS community to find out how to meet their learning needs so that MSSoftServe can help them cope with their version of the disease. Please take a moment to check out the site to learn more about this effort and spread the word to those who will benefit.

Have you or a loved one been diagnosed with MS or any other chronic disease? What would you want to learn on a site that could be customized for you?

Share your insights in the comments section.

Categories: General

A Leap Forward for Virtual Health Care

Have you ever sat in a doctor’s office waiting room wishing your physician could have visited you at home? In many states, physicians can now conduct evaluations directly through your laptop, smart phone, or tablet, and patients are responding with enthusiasm.

Roy Schoenberg, MD, MPH

Roy Schoenberg, MD, MPH

However, medical boards in some states have adhered to older rules that prevent use of telemedicine. A recent development will balance their legitimate concerns about abuse of this technology with its immense benefits, enabling states to realize the promise of telehealth in possibly reducing health care costs and improving patient outcomes.

In April, the Federation of State Medical Boards (FSMB) adopted new policy guidelines for the safe practice of telemedicine. States finally have a basic roadmap for ensuring that patients are protected in this fast-changing health care delivery environment. The new guidelines provide much-needed clarity on “Do’s and Don’ts” in the use of telehealth technology when practicing medicine and frame the principles of operation that must be adhered to in order to preserve patient safety and quality of care. They offer a detailed framework needed to revise outdated rules. I expect many state medical boards to tailor the guidelines to meet their own perspectives and cultures moving forward, but as a whole, health care will take these new rules as sign of the times and modernize to embrace telehealth.

In an event such as this, it is important to take a step back and acknowledge history in the making. The unanimous ratification of these new guidelines is probably the strongest message the house of delegates of the FSMB could have sent; decisive leadership such as this is impressive and rare. Telehealth adoption will come when people gain clarity that it is a safe and valuable way to deliver care; the FSMB has done a terrific job in preparing the landscape for large-scale use of telehealth.

The fact that the FSMB did not make any changes to the definition of telehealth is not an oversight. In fact, on the contrary, it is a reflection of the great diversity in this technology. Ten years ago, telemedicine was only a construct between physicians. Today, we have telehealth with multiple end points between patients, mobile health, wearable devices, home biometrics, health care kiosks, e-visits of sorts, etc. The FSMB tried to keep definitions very high-level in order to prevent these important guidelines from becoming obsolete over time, as many other guidelines and rules have before.

There are still barriers to the widespread adoption of telehealth. State licensure of physicians limits how helpful the technology can be to spread health care services to where they are challenged. Reimbursement by Medicare and Medicaid is essentially nonexistent, mostly because of the unknown impact on future costs. Physicians are still afraid they will be sanctioned if they don’t examine a patient in-person. There are more examples like these. The good news is that these barriers are quickly eroding. Most importantly, patients – our industry’s main customer – love telehealth.

In the end, the people will prove stronger than the industry’s outdated rules, and the floodgates will open. In ten more years, the term telehealth will be gone, and this technology will simply be an integrated part of mainstream health care.

Please share your perspective in the comments section below.

Patient of the Month: Sharon Harris Survives Lupus and Pays It Forward

Sharon Harris remembers February of 2002. She remembers where she was, what she was wearing, and what she was feeling. Most of all, she remembers the day she was diagnosed with lupus.

SharonHarris1

Sharon Harris, lupus awareness advocate and founder of Lupus Detroit

May is Lupus Awareness Month. Lupus is a chronic inflammatory disease that occurs when the body’s immune system is unable to distinguish between foreign illnesses and the body’s own tissue and organs. Inflammation caused by lupus can affect joints, skin, kidneys, blood cells, brain, heart, lungs, and other organs. Although there is no cure for lupus, there are numerous medications that can alleviate its symptoms.

Sharon had just graduated from Florida A&M University in Tallahassee when she received her diagnosis. “I was 22 at the time, fresh out of college,” Sharon said. “You’re taught while you’re growing up to learn your manners, respect your elders, and get a good education. No one tells you about an autoimmune disease that you will have for the rest of your life.”

Nor had anyone told her what having lupus would entail. “I immediately went into battle mode,” she said. “I had graduated from college. I had traveled 1200 miles from my family to make my journalism degree happen, and I was going to fight.”

“But, as soon as I got my fight on, that’s when all the pain started.”

Sharon experienced a flare-up of symptoms. It would be an understatement to say that the rest of that winter was difficult for her. Her hair began to fall out. She suffered from constant fatigue and pain. In the month of February alone, Sharon lost thirty pounds.

After beginning treatment on several different medications, Sharon started feeling better by that summer. One Wednesday during a Bible study, Sharon was asked what she would do if it were her last day on Earth.

“I said I wanted to see the world,” Sharon said. “Because if lupus was going to take me out, then it was going come and find me in Paris on the Eiffel Tower or on a beach in the Virgin Islands.”

By chance, Northwest Airlines (now Delta) had put out an ad to recruit flight attendants. It was a dream job for Sharon. The job provided her with better insurance, and on her off days she could fly to any location on Northwest’s roster. Just as she had hoped, Sharon got a chance to see the world. Amazingly, Sharon started to find that her experience with lupus was helping her have a healthier mindset. “It really made me think of life in a whole different way, and just literally live. Just really get out there and live,” she said.

Sharon eventually moved back to Tallahassee, opening an eyelash parlor and holding down an office job. At that point, she experienced another flare-up. “In October in Tallahassee it is still 100 degrees outside, and I was wearing a wool coat,” Sharon said. “I was so sick.” Sharon packed up and returned to her hometown: Detroit, MI.

Now, too sick to work and without a job, Sharon did not have health insurance. The lupus was attacking her kidneys and the medicine that she was prescribed cost upwards of $3,000 for a month’s supply. Despite pinching pennies to afford her daughter’s medication, Sharon’s mother was willing to refinance her house to save her only child’s life.

That’s when Sharon’s luck shifted. One day, she visited a local lupus organization with the intention of buying a t-shirt, and she ended up walking out with a new job. Her new public relations position did not include benefits but being employed allowed her to purchase health insurance.

Although she had insurance, her share of the payments for her four medications was unaffordable; one of the therapies alone cost more than $1,000 per month. That’s when Sharon found out about the HealthWell Foundation from a Google Alert. HealthWell is a nationwide non-profit providing financial assistance to insured patients who are still struggling to afford the medications they need (and sponsor of this blog).

“Literally, HealthWell saved my life,” Sharon said. “I didn’t have to incur any debt, my mother didn’t have to refinance her house, and HealthWell saved the day.”

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And Sharon wanted to save the day for others like her. She has become a leading activist for lupus awareness, starting her own advocacy group called Lupus Detroit, which offers lupus patients emergency grants. Sharon points out that there are two colors that are used for lupus awareness, orange and purple. She opted for orange for her organization because the color is “louder” and garners more attention. “Lupus needs all of the attention that it can get,” Sharon said.

Sharon is currently in remission and has been doing well since receiving a grant from HealthWell in 2011 that allowed her to afford her medications. “I was inspired by the work that HealthWell does to help people with their medications,” she said. “I just don’t believe that someone should have to choose between paying for their medication and feeding their children.”

And neither do we, Sharon. Keep up the excellent work.

If you are inspired to help, consider raising awareness during Lupus Awareness Month and showing your support. Here are some suggestions:

  • Make a donation to HealthWell’s SLE Fund in honor of a family member or loved one who is battling lupus.
  • Celebrate World Lupus Day on Saturday, May 10th.
  • Put on Purple on Friday, May 16th and visit The Lupus Foundation of America’s website at www.lupus.org to learn how you can show your support.
  • Find your local Lupus Foundation of America chapter to learn about activities in your area.

Has lupus touched your life? Do you have plans to show support during Lupus Awareness Month? Share your story in the comments section.

Categories: Cost-Savings

KIDS: Providing Children and Families a Voice in Medicine, Research, and Innovation

The active involvement of patients in health care choices, diseases, research, and innovation is an area of recent focus for many public and private entities (e.g., FDA’s Patient-Focused Drug Development initiative).  As an innovative method to engage children, the KIDS (Kids and Families Impacting Disease Through Science) project was launched as an advisory group of children, adolescents, and families focused on understanding, communicating about, and improving medicine, research, and innovation for children. KIDS is a unique collaboration between the American Academy of Pediatrics (AAP) Section on Advances in Therapeutics and Technology (SOATT), local AAP Chapters, children’s hospitals, local schools, and other partners.

The objectives for the KIDS project are as follows:

  • Learn, teach, and advocate for medicine, research, and innovation that improves the health and well-being of children;
  • Engage in the process through projects and consultation activities with hospitals, researchers, and other partners in the public and private sectors;
  • Provide input on research ideas, innovative solutions, unmet pediatric needs, and priorities;
  • Contribute to the design and implementation of clinical studies for children (e.g., assent, monitoring tools, schedules, etc.);
  • Serve as a critical voice for children and families in the medical, research, and innovation processes.

KIDS launched as a pilot program in Connecticut in September 2013 and will be expanding to other states in the US (e.g., Utah, New Jersey). The KIDS Connecticut Team has participated in meetings at Connecticut Children’s Medical Center (Hartford, CT) and Yale-New Haven Children’s Hospital, a Research Summit at Pfizer’s Connecticut Laboratories, and an advisory session with Mr. David Tabatsky, author of Write for Life.

In addition, the team attended the AAP’s Healthy Children Conference & Expo in Chicago in March, at which they staffed an exhibit booth highlighting their work and the importance of research and innovation for children. They also conducted survey-based research by collecting more than 300 responses with a focus on participants’ opinions of the importance of research in their lives and the role of children in research. Three KIDS Team Members delivered an invited Learning Zone presentation for conference attendees discussing the importance of research, the work of the KIDS Team, and the vision for future expansion. Finally, the KIDS interacted with numerous AAP leaders and staff members throughout the weekend. Overall, the KIDS involvement in the conference was a resounding success as each Team Member was articulate and passionate about their work and the importance of medicine and research. Feedback from attendees, exhibitors, and AAP leadership/staff was overwhelmingly positive. The Team will also be attending the Pediatric Academic Societies meeting in Vancouver in early May and will be collaborating with a similar children’s advisory group located in that city.

In addition to a KIDS expansion in the US, SOATT is working with existing young person advisory groups and other partners to develop an international network of children advisors. The children, families, leaders, and partners are very excited about the potential opportunities for these teams and the future network to make a significant impact on the health and well-being of children worldwide.

Do you think it is important for children to be involved in shaping pediatric medical research? Have you had experience with kids getting involved in their health care? What was the outcome? Share your thoughts in the comments section.

If you are interested in participating in this project or would like more information, please contact Charlie Thompson (charles.a.thompson@pfizer.com).