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Big Data & Health Care: Speaking with Dr. Hallie Prescott

For the latest installment in our series on Big Data & Health Care, we sat down with Dr. Hallie Prescott to discuss the use of structured data and unstructured data in continuously learning health systems. Hallie Prescott, MD, MSc, is Assistant Professor in Internal Medicine in the Division of Pulmonary & Critical Care Medicine at the University of Michigan Health System. She is also a research scientist with the HSR&D Center for Clinical Management Research and staff physician at the VA Ann Arbor Healthcare System.

Real World Health Care: Why do you think Big Data is pervasive in the business world, but not in the health care world?

Hallie Prescott, MD, MSc

Hallie Prescott, MD, MSc

Hallie Prescott: That’s a fairly common observation and one that is difficult to get to the bottom of. There are probably several factors limiting the uptake of big data in health care. First, there is the issue of information privacy. Health care data needs to be highly secure, which can make it difficult to share data across health systems. This type of roadblock tends to limit big data initiatives in health care. The health care systems leading the way in data analytics — the VA and Kaiser Permanente, for example — are successful because they are integrated health care delivery systems.

A second reason why big data initiatives are more widely pursued in the business world is the clear financial incentive to do so. Just look at Netflix. Their use of big data algorithms has given them a competitive advantage. We don’t have that sort of free market environment in health care.

Finally, there is the issue of physician and clinician acceptance of big data tools. Physicians still value the art of medicine and like to use their individual decision-making talents to diagnose and manage disease. So, we see some resistance to having a computer tell us what to do.

But even with all these limitations, progress is being made.

RWHC: Health care seems to be moving from the use of structured data to unstructured data. What is the difference between the two when it comes to clinical utility and improving patient outcomes?

HP: Structured data is data that already exists in a spreadsheet format. For example, when vitals signs (temperature, heart rate, blood pressure, etc.) get entered into the electronic medical record, they are stored in a spreadsheet. This data can be examined easily, but does not contain all the necessary information for answering many questions.

There is a vast amount of patient information that’s not entered into basic spreadsheets: things like doctors’ written notes, radiologists’ interpretations of chest x-rays, or pathology reports. This non-spreadsheet data is so-called “unstructured” data, and it often contains very useful information for predicting patients’ health outcomes. For example, important lifestyle indicators of health, such as smoking status, are often included within doctors’ notes, but not in a structured format.

Traditionally, the only way to learn from unstructured data was to review the medical chart. But, fortunately, we now have automated tools for extracting information from unstructured data sources. For example, natural language processing tools can search for specific words to determine if a patient smokes and how much he smokes.

RWHC: How can big data make positive impacts in a continuously learning health system?

HP: The Institute of Medicine published a report in 2012 on continuously learning health care systems. In a such a system, information is reliably captured, curated, and delivered back to clinicians in order to improve clinical-decision making for individual patients and to improve efficiency and quality of the overall health care system. Learning health care systems require an infrastructure to capture and analyze large amounts of data to inform patient care and system improvement.  So, big data is key to a continuously learning health care system.

One way health systems can become better and more efficient is by learning from mistakes at the macro level. As an example, consider what happens to patients in the Emergency Department (ED). As clinicians, we make decisions on where patients should go next: intensive care unit, general medical admission or even sent home. Sometimes, those decisions are wrong, and a patient you send to the hospital ward (or even to home) quickly deteriorates and ends up in the ICU. If we have data-driven models of various factors to consider in making that decision and apply real-time data analytics, we can use them to inform policies and protocols in the ED in order to provide safer care for future patients.

RWHC: Can you give us an example of how you’ve applied big data in your practice to improve patient outcomes?

HP: At this stage, it’s rare to find individual physicians using big data to inform their personal clinical practice. But there are tremendous benefits when you look system-wide. I’m currently studying hospital readmissions after sepsis. We’re developing a tool to predict who is at a high risk of coming back to the hospital for specific problems after sepsis, such as for kidney failure, or heart failure, or infection. Because each individual type of hospital readmission happens to only a small portion of the population, we need to identify patterns, and those patterns are only possible when you have huge amounts of data. I’m now looking at the issue within the VA Health System, using over eight years of data to understand these patterns and feed them back to the clinical community to improve patient care.

Categories: Big Data, General

New Series: Big Data in Health Care

Welcome to 2016! The staff and sponsors of Real World Health Care wish you all a Happy & Healthy New Year. We look forward to another year of sharing ideas and insights from researchers on the forefront of real-world medical breakthroughs.

Next week, we’ll be kicking off a new blog series on implications of the use of big data in health care. From predicting disease and identifying targeted therapies and cures to improving our overall quality of life, big data is transforming the way health care decisions are made and care is delivered.

Over the next couple months, our guest bloggers will address issues including:

  • The use of analytics to identify and manage high-risk and high-cost patients.
  • How to extract clinical value from biomedical big data.
  • The use of big data to understand the human condition.
  • The role of large prospective randomized trials in the era of big data.
  • Distinctions between research and operational data within a “continuously learning” health system.
  • Implications of big data science for nurse leaders.

We look forward to sharing these expert views with all of you and hope that Real World Health Care continues to be a source of useful information throughout 2016.

A New Year of Healthcare Success Stories

From all of us at RealWorldHealthcare, Happy New Year! As 2015 begins, we continue to monitor the healthcare landscape for insights and real-world examples of what’s working to improve access to healthcare, help patients manage their healthcare costs, and allow for more patient-centered care.

Linda Barlow
Linda Barlow

While our focus and goals have not changed, one thing has: new editorial management. I am proud to have been associated with RealWorldHealthcare over the past year or so as an occasional blogger. I’m even more proud to now be its new editor and look forward to continuing shining a spotlight on healthcare success stories. 

We want RealWorldHealthcare to be a valuable resource for you. To that end, we hope that you can take just a few moments to tell us what you think about the topics we are covering. What do you want to see more of? Less of? Are there topics we aren’t covering that you think we should? 

You’ll only need a few quick minutes to answer the following questions. Please also don’t hesitate to contact me at lbarlow@whitecoatstrategies.com if you have a specific story to share; we’re always looking for guest bloggers. Thanks in advance for your insight.

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Thank you!

If Uber can Deliver Flu Shots, Could Drones Deliver Medications?

Vanessa Merta

Vanessa Merta

Last Thursday, Uber test ran a new concept that added wellness to its mission of evolving the way the world moves. Along with making cities more accessible, Uber made health care more accessible with flu shot deliveries. Currently, we know of no other companies delivering vaccines upon request like Uber, but we do know of a few other health care delivery services in the works, and some of the more exciting services include drones.

DHL has been researching delivery of health care with drones they’re calling “parcelcopters.” While Amazon Prime Air has been working on delivering products via drone, DHL is testing the system with medications specifically. As a part of a month long test run that began in September, they have been delivering medications via unmanned aircraft from a coastal town in Germany to the small island of Juist, about seven and a half miles away. The only restriction thus far has been the inability to send medications that need to be refrigerated. DHL is still early in the product testing process, but they are hopeful that this can be a way to deliver medications to those who live in rural areas, or are unable to get to pharmacies.

While delivering mediations via drone sounds like an optimal solution that could provide quick health care to people in hard to reach places, some ethical questions arise. Could personal identifying information be at risk if these parcelcopters crash? A DHL spokeswoman says that the drones will not fly in the same altitudes as conventional aircrafts, and also avoid this possible breach of privacy by avoiding flying over homes.

Time magazine quickly refuted another common fear that drone delivery will increase air pollution, claiming that it can be greener than traditional forms of pick up and deliveries.

Time reporter Bryan Walsh says that delivery services are “a lot more efficient at delivering products to you than you are at driving out and buying them yourself,” and drones are no exception.

Following in Amazon Prime Air’s path, FedEx has been researching drone delivery, but they want to find a specific niche. They have not named their interests yet, but why not consider medication delivery? Over the summer, Google announced that they have been researching drone delivery in the Australian outback, where they successfully delivered first aid kits to rural farmers. Both companies are in the developing stage, but once finished this could be a promising new technology that improves health care accessibility.

American companies will have a more difficult time than DHL in Germany because the Federal Aviation Administration bans the use of unmanned aircrafts to deliver commercial products. Amazon says that as soon as the FAA has the proper regulations in place, it will begin delivering products via drone. Maybe after that, an American drone delivery service will claim medication delivery as their niche.

How would you feel about drones delivering your medications? Do you think these nontraditional methods of health care delivery will gain acceptance and popularity in the future? Tell us what you think in the comments section!

Categories: Access to Care

The 21st Century Cures Initiative…And a Bold Plan

David Sheon

David Sheon

The one thing that Democrats and Republicans in the House of Representatives agree on is that they just don’t agree. It’s an old, tired state of affairs and the resulting gridlock affects everything from education to crime to defense. Thanks to two typical party rivals, this unfortunate paradigm may be shifting…all in the name of health and science.

Fred Upton (R-Michigan) and Diane DeGette (D-Colorado) have set aside their differences and joined together to lead the 21st Century Cures Initiative. The initiative marks the first time in memory that Congress is taking a comprehensive look at what steps can be taken to accelerate the pace of cures in America. With the backing of the Energy & Commerce Committee (which Rep. Upton chairs), The House of Representatives is looking at “the full arc of this process – from the discovery of clues in basic science, to streamlining the drug and device development process, to unleashing the power of digital medicine and social media at the treatment delivery phase.”

In a recent bylined article in The Hill, a newspaper read by members of Congress and their staff, Jim Greenwood, President and CEO of the Biotechnology Industry Organization, offers an idea that could take hold in the spirit of this ember of bipartisanship. His idea includes potential funding for a massive, long-term research study that will involve over 100,000 Americans and examine some of the most devastating diseases, including Alzheimers. Part of the study will be to identify biomarkers common to those who develop the diseases, which will then lead to cures. Once a biomarker is identified, drugs can be developed that hit that biomarker.

Mr. Greenwood, once a member of Congress himself, addressed the Upton-DeGette initiative during the Rare Disease and Orphan Product Breakthrough Summit held by the National Organization for Rare Disorders that convened in Alexandria, Virginia earlier this week.

Mr. Greenwood pointed out that many scientists have failed to find cures to diseases like Alzheimer’s because by the time the patient shows symptoms, the neurological damage is already done. His long-term biomarker study is designed to overcome this hurdle. Greenwood challenged the conference attendees to help think through how this could work to develop cures for rare diseases as well.

The 21st Century Cures Initiative recognizes that innovation is happening at lightning speed. From the mapping of the human genome to the rise of personalized medicines that are linked to advances in molecular medicine, constant breakthroughs are changing the face of disease treatment, management, and cures. Health research is moving quickly, but the federal drug and device approval apparatus is not keeping pace. And when the laws don’t keep up with the innovation, we all lose.

Representatives Upton and DeGette recognize that for more lives to be saved, Congress will need to take a comprehensive look at the process of getting drugs to market – from discovery to development to delivery with the simple goal of saving lives. Add Mr. Greenwood’s idea into the mix, and we may be able to save billions of dollars that would otherwise go to the long-term treatment of Alzheimer’s patients. More importantly, we could save millions of patients and their families the painful loss caused by the disease.

This makes so much sense that not even Congress can disagree. Will you tell your member of Congress to support this bipartisan initiative?  What do you think of it?

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.

UV Safety Month: Shedding Light on Melanoma Treatment and Prevention

In 2014, an approximate 77,000 Americans will be diagnosed with melanoma, culminating in nearly 10,000 deaths. Every eight minutes, an American is diagnosed with melanoma, and every hour, an American dies from it. Despite accounting for only four percent of all skin cancer cases, melanoma results in 80 percent of all skin cancer-related deaths. In observance of UV Safety Month, Real World Health Care is examining what’s working and what’s new in the prevention and treatment of melanoma.

photo (1)

Nathan Sheon

If detected early, melanoma is easily treated with surgery. If a tumor in the epidermis – the upper-most layer of skin – is removed before it deepens into the skin or spreads to other parts of the body, the likelihood of completely curing melanoma is high. When melanoma spreads, other treatment options include chemo- and radiation therapy.

Once melanoma has progressed to its later stages, however, treatment of the disease becomes much more difficult. For these patients, treatment options usually focus on extending life expectancy and improving quality of life.

Within the last few years, developments in melanoma research have provided promising leads on how to increase a patient’s lifespan beyond the capabilities of existing treatments. Certain activation immunotherapies – drugs that activate the immune system’s ability to fight disease – are showing potential in their ability to combat the spread of melanoma by killing tumors. Though these treatments do not work in all melanoma patients, in some cases they have been associated with unprecedented increases in lifespan.

“All of these trials involve late stage cancer patients. Suddenly we’re seeing those same patients getting two years or more survival time,” said Ashani Weeraratna of the Wistar Institute, the nation’s first independent institution devoted to medical research and training. “Enhancing the immune system such that it can effectively target and destroy your tumor has been a goal for many years. That’s [the field’s] big advance.”

Melanoma is almost always curable when detected and treated early on. Monthly self-examinations and yearly visits to the dermatologist are highly advised, even for those not predisposed to skin cancers. More information on how to perform a self-examination can be found online in guides from the Skin Cancer Foundation and the Melanoma Research Foundation.

Among other important measures like self-examinations and avoiding tanning booths, the American Academy of Dermatology (AAD) advises that wearing sunscreen when spending time outdoors is vital, especially during peak daylight hours between 10 AM to 2 PM. The AAD suggests using sunscreen with a sun protection factor (SPF) of 30 or above. With a range of sunscreen products on the market, choosing the right one can be difficult. Different products are more effective for different people depending on skin type. Visit the Skin Cancer Foundation’s guide for more information on choosing the right sunscreen product for you. For more information and tips on preventing and detecting melanoma, visit the AAD’s online guide.

How do you stay safe in the sun? Let us know in the comments section.

*Jamie Elizabeth Rosen, editor of Real World Health Care, contributed to this piece.

Health Benefits of Letting Your Employees Sleep Until Noon

How does an extra hour of sleep sound to you? How about not having to commute to work every day? Flexibility in the workplace is becoming an increasingly popular perk in business, with 45% of Millennials preferring flexible work hours over higher pay.

Nathan Sheon

Nathan Sheon

The correlation between workplace flexibility and productivity, morale, etc. is being debated in the business world. However, when it comes to health, a new study by researchers at the University of Minnesota suggests that models for workday time management that focus exclusively on accomplishments can confer health benefits.

The idea behind the so-called “Results-Only Work Environment” (ROWE) is to pay employees based solely on results, as opposed to hours spent in the office. Advocates of ROWE suggest that employees then have the freedom – and responsibility – to get their work done whenever, wherever they would like, as they are only expected to make measurable contributions to the organization without necessarily having to spend time commuting or working in the office. This approach has the potential to allow employees to spend less time during the day focusing on work, and more time focusing on their families, recreation, and health.

A 2011 study by the University of Minnesota research team suggested that “participating in the ROWE initiative directly increases employees’ health-related behaviors of sleep and exercise, as well as the likelihood that employees will not go to the workplace when sick and will see a doctor when sick.” Although the ROWE approach did not directly produce changes in measures of well-being such as sleep quality, energy, and self-reported health, there is evidence that such a system “directly improves health-behavior outcomes over a six-month period.”

The new 2014 study by the same team did not suggest that ROWE implementation reduces psychological time demand, but it did find that employees experienced an increase in sense of time control – a sense of time adequacy and schedule control. Furthermore, the study found that these factors can predict an increase in a worker’s energy, mastery, and self-assessed health, along with reductions in somatic symptoms, emotional exhaustion, and psychological distress.

“This study provides strong support for our hypotheses that time demands and time control are important job conditions that matter for health, net of classic job strain measures (job demands and job control), as well as measures of home strain (home demands and home control),” stated Phyllis Moen, the head researcher, in the study. “It thus builds on and extends the limited evidence to date on the health effects of the rising time strain experienced by growing numbers of workers.”

ROWE was originally developed by Jody Thompson and Cali Ressler at Best Buy in 2005. Some companies that have experimented with ROWE include GAP Retail and Yum! Brands, which oversees the restaurant chains KFC, Taco Bell, and Pizza Hut, among others.

Have you ever worked in a Results-Only Work Environment or with a more flexible schedule than the typical 9-5 job? Did you find that flexibility with your work hours affected your health? Share your thoughts in the comments section.

Categories: General

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