By Trisha Torrey. Once upon a time when we experienced strange symptoms, we went to the doctor, the doctor listened and asked questions, we got the medical tests we needed, were correctly diagnosed and successfully treated, and we could afford all that great care.

I say “once upon a time” because today, that scenario is mostly a fantasy.  And sadly, today’s story doesn’t always end with happily-ever-after – for anyone.

Providers went to medical school to learn to heal and help. Instead they carry excessive patient loads amidst decreasing reimbursements, spend a small fortune on malpractice insurance, and reject some patients who don’t have the right kinds of payers, or who take up too much time with difficult diseases or comorbidities. They are frustrated with their inability to deliver the care they prefer to deliver, but they must protect themselves or they will lose their practices.

Since the passage of reform, insurers have been forced to realign their requirements and services so they can continue to suck money from employers, patients, providers and the government. They spend billions on lobbying efforts, and reduce their provider reimbursements – at the expense of patients who are continually denied the care they need. A million families go bankrupt each year because they erroneously believed their insurance would cover their care when they needed it.

Those patients, accustomed to provider paternalism and decent payment coverage, find themselves blindsided to this devolved system that no longer provides the care they need and deserve. They get sicker. They die from medical errors. They lose their homes. No one has ever even suggested, much less taught them how to stick up for themselves or take responsibility for their own medical decision-making.

Patient Advocates to the rescue! Patient advocates are the only participants in the healthcare equation who may deliver improved outcomes for everyone  – providers, payers and most of all –patients.

When an advocate accompanies a patient to an appointment, less time may be required because the advocate will facilitate communication and the process. In a hospital setting, a bedside advocate will double check drug dosing and insist on hand washing, keeping the patient safe and providers out of hot water.

Payers benefit from the efforts of patient advocates, too.  Advocates help patients understand when a generic drug makes sense, or question a diagnosis before the wrong treatment is dispensed or performed, and therefore must be reimbursed. A billing or claims advocate knows how to file paperwork correctly, or reduce a hospital bill, saving time and expense for payers and patients.

Of course, advocates provide the biggest benefits to us patients. We can rely on our advocates to be focused on our improved outcomes and well-being.  Just like – once upon a time — we relied on our doctors.

Talk about disruptive! Rare is the case that an extra person in any relationship can improve the outcomes for everyone involved. 

But this is no fantasy. Patient advocates are skilled and ready to help.  Including an advocate in the medical care delivery equation can help us refocus on the possibilities of the good care that providers wish to deliver, payers are willing to pay for, and patients deserve to get.

Our series on Patient Advocacy kicks off with today’s post.  Over the next week, we will hear from a variety of women about their personal journeys and professional experiences.  Early in September we will compile these posts, along with our August Man of the Month’s and blog talk radio interviews, into an e-book.  As always, we look forward to your comments.

By Stephanie Mensh. When my husband, Paul Berger suffered his stroke, we were both in our 30′s, established in our careers, and planning for the future. We wanted to continue our active lifestyle, which meant overcoming Paul’s disabilities and pulling services out of many different organizations, each with their own roadblocks. I became Paul’s advocate. Here are my tips for successful advocacy to get what your survivor needs from the system.

There are three types of advocacy: (1) personal advocacy by individuals, family members, friends or others to obtain benefits and services from public or private service providers; (2) legal advocacy by a lawyer to navigate legal processes; and (3) political or policy advocacy by lobbyists and concerned citizens to change government systems.

Personal Advocacy

Most caregivers learn to be personal advocates by “on-the-job” training, usually starting with hospital, medical, and therapy providers, then health insurance. Here are some tips to help you improve your personal advocacy:

• Make a written list of your needs and questions, and go after the most important first.
• Research as much as possible from insurance policies, medical brochures, treatment plans, and other sources.
• Talk to other caregivers and ask for advice, especially for the names and phone numbers and emails of people who were helpful to them.
• Call and ask for the person or department that specifically handles the services or questions you need answered. Ask for the exact spelling of that person’s name.
• Write down the date, time, person’s name, and topic discussed in any phone calls. Keep this in a file with your other materials and research.
• Be persistent. This may mean calling every day. This may also mean asking another family member or friend to call on your behalf.
• If you feel that your questions are not being answered, or you are not getting the appropriate services, find an outside professional, agency or organization that can intervene on your behalf.

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By Regina Holliday. On Thursday night in an office space in Georgetown a crowd was forming. It was an after-hours crowd. The room was filling with advocates, artists, professors, and students. There were doctors, IT professionals, authors, and members of the community. There were mothers, fathers, grandparents and children. They had all come to see an exhibit of art.

This office was the shared space for Clinovations and Osmosis. The wonderful folks at Clinovations had suggested placing one of my paintings in their space to brighten up the blank white walls. Perhaps one of my paintings would support an even greater awareness of the need for patient-centered care. I thought, why stop with one painting why not many? Why not have an entire show and invite people from every facet of health care and beyond? I wanted to create a space for conversation and networking. I wanted people to get together and have some face time surrounded by art.

I envisioned a crowd of people thinking of ways to provide better care for patients everywhere. As I thought about this, I realized that this concept would be the focal piece of the show. Give Us Our Dammed Data is my first crowd-sourced painting, and it features quite a crowd. I wanted to paint a citizen army of patient advocate authors. I knew quite a few from Facebook and Twitter and had read their work. So I asked for suggestions from Dave DeBronkart, Trisha Torrey, Lisa Lindell and Helen Haskell. Between the five us we created a list of potential authors. Helen suggested I contact all of them and ask their permission to include them in the painting. With her help I found their addresses. I really enjoyed the give and take of emailing each author. I explained I wanted to paint them and their books.

And so another crowd gathered in Georgetown on Thursday night. They did not move or laugh. They did not drink wine or nibble the delicate appetizers. Instead, they stared down upon us with sorrowful smiles. In a room usually filled with laptop computers and hushed conversation hung a large painting picturing a crowd of authors. These authors’ books span 15 years, and all of them are telling a very similar tale.

17 authors with weapons in hand stare down upon the viewer. The three panel painting measures 60 inches by 144 inches. It is a very large painting, and yet it is crowded with many who have been hurt and many who have suffered. Every one of them is an author. Most of the authors in the painting took the hurt and outrage they felt about a dysfunctional medical system and channeled that into a book. That book is their shield and their pen is a spear.

These are people who have taken up arms in a battle they had never intended to fight. Note they are dressed only loose robes or hospital gowns. Their feet are bare. They dress as the supplicant or the pilgrim. They are on a mission. For some of the citizen soldiers it has been a very long path.

Journalist Michael Millenson’s Demanding Medical Excellence was published in 1997, and as you read it it is hard to comprehend it was written 13 years ago. It reads like it was written yesterday. So in the far left panel Michael’s back faces the viewer in the piece. The public has not been listening. He is turned toward a fellow advocate who will spread the word. He is speaking to Julia A. Hallisy who looks concerned. And so she should. (more…)

By Robin Strongin. Over the next several weeks Disruptive Women will be blogging about the various aspects of patient advocacy.  Then in September, we will disseminate an e-Book on the topic.  To get ready for this series, I invite your input; think about what patient advocacy means to you and share your stories with us. Please comment on this post to let us know what you think about the topic– its level of importance in health care and any questions you may have or experiences you are comfortable sharing.I hope you will join us in this very important dialogue.

By Robin Strongin. When the Obama Administration announced the new regulations expanding preventive care, ensuring that essential screenings and tests would be covered without co-pays for deductibles, my first thought was that this may be one of the most important provisions of health reform in terms of improving the overall health and well-being of the American people.

My second thought concerned forests, falling trees and sounds we may or may not hear.

The history of health care in the United States is, in large part, defined by sound policies and vital programs that are not accompanied by effective outreach to  the patients and consumers who have the most to gain from these innovations.  Thus, new provisions expanding preventive coverage have the potential to be like the proverbial tree falling in an empty forest.  If we don’t do a good job letting people know these services are more accessible, will they take advantage of them?

I think of the millions of people who are eligible for Medicaid or for Children’s Health Insurance Programs who aren’t enrolled.

I think of the widespread confusion that existed in the early days of the Medicare Part D prescription drug program until several organizations stepped in to conduct coast-to-coast information sessions with seniors.

And I think of the story that just appeared in the New York Times (http://www.nytimes.com/2010/07/15/health/15chen.html?_r=2&ref=health&pagewanted=print) regarding the growth in usage of the “medical home” model for health care.  (I prefer the term health home, but that’s for another post.) As Dr. Pauine Chen pointed out in the Times, empirical evidence is showing that the medical/health home – shorthand for greater care coordination between the patient’s primary care physician, specialists and other health care professionals – is working.  A demonstration project sponsored by the American Academy of Family Physicians showed that the new model was improving quality of care, efficiency of operations and physicians’ job satisfaction.

But patients hated it, because no one bothered explaining to them why their one-on-one relationship with their health provider was being replaced by a one-in-three or one-in-four relationship with multiple providers, even if it resulted in better care.

And, thus, does this new innovation in health care delivery fall within the proud history of U.S. health care in which great ideas are not linked with communication to the patient.

As health reform is implemented, both the public and private sectors need to do better, beginning with outreach to let people know about the new preventive care coverage and, more importantly, to ensure that Medicaid expansion and the new subsidies to help make private health insurance more affordable affect the people for whom they are intended.

By Santi Bhagat, MD.  It seems that children with chronic medical conditions and disabilities (CMCD) just disappear into thin air when they grow up.  No-one tracks these young people, so we have no idea what happens to them.  We don’t know if they have insurance and doctors; are sick and in emergency rooms; go to school and have jobs; and/or live independently and have social lives. It is estimated that 600,000 young people with CMCD enter adulthood every year, into a system devoid of any supports and services, a system that is completely unprepared for them.  

To help improve things for children with CMCD as they transition into young adults , Physician-Parent Caregivers (PPC), is launching EMERGE–a new campaign  next week…stay tuned…I will be blogging more about that in the coming weeks.  

In the meantime, I would like to introduce a special PPC young adult leader, Amy Long.  Amy is one of America’s 8.2 million amazing young adults with CMCD who push through barrier after barrier and never give up on their dreams.  Amy gave me permission to share her first person account of what it is like to be a young adult with a chronic medical condition.  She calls it, the Google Circus.

GOOGLE Circus

Five years ago, I aged out of my pediatric skeletal dysplasia clinic (a place for kids with bone diseases).   I will never forget my first two adult medicine experiences….The first happened late one Fall evening. 

I was in college dorm my senior year and I woke up  from a late afternoon nap with a terrible headache, flashes of light and floating dots in my vision. I have a rare connective tissue disorder and form of arthritis called Kniest Syndrome that puts me at risk for a detached retina.  The flashes of light and floaters are common symptoms of retina disease.  Retina detachment is only fixable in the first 24 hours. I immediately called Student Health who told me they could get me into see an eye doctor next week.  I tried to explain that I couldn’t wait that long but no one seemed to take me seriously. All the doctors had left for the day. I called a friend and we drove the Emergency department.

We arrive. I spell Kniest no less than 3 times for the tirage nurses. They lead me back to the eye exam room and leave the door open with my chart hanging there. The doctor grabs my chart, starts to come in, looks at my file. His eyes widen and he backs out of the room. Through the open door I watch him try to Google Kiiest Syndrome.  He flips through the links and then finally after five minutes comes back in and sheepishly asks me, “So what exactly is going on?” I tell him, yeah I have a migraine-like headache, and I am seeing stars. I have a collagen disorder that causes high myopia and thus very fragile retinas. “Yes, yes, how exactly do you spell your condition?” I spell Kniest 2 more times.  I then watch him turn around and type Kniest Syndrome into Google. (more…)

By Robin Strongin. I spent part of this past weekend at the Ovarian Cancer National Alliance (disclosure-a client of mine) Annual Conference and came back both humbled and inspired.  It is a remarkable experience to talk with people whose lives have been profoundly changed by cancer.  Their grace and strength, their determination to DO something — about research, about curing this disease, about changing laws, about helping others – was inspiring.  The women I met were young and not so young, they had hair, and bald, tatooed heads, they came from all over the country and they were all, in their own way, supporting each other and themselves. Many of them had become advocates.

Over the years, I have noticed an exponential increase in the number of professional health advocates and individual patient advocates.  Many advocates, not surprisingly, have been personally affected by illness–and the unbearable frustration that comes with having to not only focus on healing, but navigating multiple dysfunctional health care systems along the way–whether it’s poor quality care, misinformation, lack of information, difficulties finding health care professionals who meet individual needs, to name a few.  

Advocates are certainly not new, but what has changed are the availability of new online and mobile tools to connect advocates, their families, their friends, and others with similar situations.  The ability to organize, advocate, tell your story, through various mediums has fueled a new phase of patient advocacy– and given voice to what I see as a revolution.

Disruptive Women in Health Care is working on its newest e-book which will feature posts by a wide range of patient advocates–these stories and shared experiences will not only move you but will provide useful information so you too can advocate.  

Look for these posts throughout the summer, and send us your stories as well.

By Joy Burwell

You’re Invited to

“Solutions To Scale: Proven Health Care Models for Primetime”

 Wednesday, June 30, 2010

 9:00 – 11:30 am

Breakfast will be served at 8:30 am

Kaiser Family Foundation

Barbara Jordan Conference Center

1330 G Street, NW

Washington, DC 20004

 Raise the Voice, a program of the American Academy of Nursing supported by a grant from the Robert Wood Johnson Foundation, showcases the work of “Edge Runners” – nurse researchers and experts who have developed proven care models and interventions that demonstrate significantly improved clinical outcomes and cost savings.  The Edge Runners will share their experiences to highlight what does and does not work for consideration by federal and state agencies during health care implementation.

Welcome:

• Diana J. Mason, PhD, RN, FAAN, Editor-in-Chief Emeritus, American Journal of Nursing
• The Honorable Robert Borski

Opening Remarks:

• Ken Thorpe, PhD, Department of Health Policy and Management, Rollins School of Public Health, Emory University

Panel One:

• Tina Johnson, CNM, MS, Practicing Nurse Midwife
• Tine Hansen-Turton, MGA, JD, CEO, National Nursing Centers Consortium, Executive Director, Convenient Care Association, Raise the Voice Edge Runner
• Eileen M. Sullivan-Marx, PhD, CRNP, FAAN, Advisor, Living Independently For Elders (LIFE), Raise the Voice Edge Runner
• Deirdre Baggot, BSN, MBA, Administrator for Cardiac and Vascular Services, Exempla Saint Joseph Hospital, CMS ACE Demonstration Site for Bundling Payments
• Sandra Haldane, BSN, MS, RN, Chief Nurse, Indian Health Service

Panel Two:

• Randall Krakauer, MD, FACP, FACR, Head of Medicare Medical Management, Aetna
• Susan Reinhard, PhD, RN, FAAN, Senior Vice President, AARP Public Policy Institute, Chief Strategist, Center to Champion Nursing In America
• Matt Salo, Director Health and Human Services Committee, National Governors Association

Moderator:

• Scott Hensley, National Public Radio

RSVP: Joy Burwell 202-263-2971 or jburwell@amplifypublicaffairs.net

Sponsored by the American Academy of Nursing’s Raise the Voice Campaign. Raise the Voice is supported by a grant from the Robert Wood Johnson Foundation

Ever since Viagra hit the stores (and bedrooms) drug companies have been searching for a comparable little pink pill. Viagra didn’t seem to do much for girls (we tried it once, we felt nothing). Now there’s a new pink pill that came really close to getting FDA approval, but failed.

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By Sheryl Flynn.  Earlier this week, the American Heart Association (AHA) announced a new partnership with Nintendo of America.  According to their website (www.activeplaynow.com), the AHA and Nintendo are working together to promote physically active play as a part of a healthy lifestyle. This is the first time that the AHA has partnered with the video game industry to help consumers discover how video games that incorporate movement can be beneficial to health.  According to their “Healthy Lifestyle Tips” they encourage everyone in the house to enjoy active-play video games together and when the weather prevents outdoor activities- they encourage hosting an active-play video game tournament in your living room. 

 Today, according to AHA’s press release- They are not supporting playing all video games in an effort to promote a healthy lifestyle- only the Nintendo games such as WiiFit™ Plus and Wii Sports Resort™ software for the Wii are supported by the AHA.  The AHA’s logo will be found on these products beginning this summer. 

 The AHA is “trying to reach people where they are.”  They suggest that if you don’t move at all- move some.  If you move a little, move a little more.  In essence, if you go outside and play sports or are already active- they are not suggesting that you come inside and play video games- rather, they are trying to get those people who play video games (or are otherwise) mostly inactive- to start doing something active.  They figure, if you like playing video games and typically play video games with your thumbs while surfing the couch- perhaps you could get a little exercise by playing active video games. They are targeting the “no physical activity” group and trying to get them to move!

So, as one would expect- there is controversy over the two companies working together.  Some people believe that both Nintendo and the AHA see a significant return on their partnership investment.  But the AHA has suggested that this is not the case.  Nintendo has contributed $1.5million to AHA to fund a prevention platform aimed at informing Americans about heart disease and stroke prevention.  Another important consideration to keep in mind is that Nintendo is not the only “active-play” video game company out there.  Sony PlayStation released the “EyeToy” years before the Wii and it offers many hours of fun, active gaming as well.  The EyeToy is fun because you can see a video projection of yourself in the game, rather than controlling an avatar as with the Wii games. Microsoft plans to release Project Natal later this year- these games will also offer hours of active gaming fun! There are a number of other off-the-shelf gaming devices that promote active gaming- the consumer should be encouraged to seek the game that would be most fun for them. 

Perhaps most exciting, however, is the Innovation Summit that the AHA intends to host.  With $350,000 support from Nintendo, the AHA will bring together “Thought Leaders” in the area of health care, research, physical activity, fitness and video gaming to look at the synergies and potential benefits of active-play video games and physically active lifestyles.  Now that is exciting!  Finally!  The game industry, researchers and health care industry all together in one room to envision the future!  Wow!

By Liz Scherer.  A Twitter friend recently asked me about stopping hormone replacement therapy (HRT). It was a question that I hadn’t explored thoroughly although I write about HRT often on my blog. In fact, I had never truly considered the “what now” of the issue, as in, what if you decide to go off hormones or try alternatives after you’ve been on HRT?

Interestingly, when I looked into the issue, the answer seemed to be even less clear-cut than the therapy. In fact, there are no guidelines for stopping HRT.  Granted, until the Women’s Health Initiative started to reveal the dangers and risks of HRT, there was no real reason to stop therapy, (although, I’m of the mindset that there’s really no good reason to start HRT).

Fortunately, researchers are finally starting to look into this issue although study findings (which are published in the online edition of Menopause) highlight that the practice of stopping HRT is intuitive and not evidence-based.

So, what did they learn?

Among 438 group practice physicians surveyed, an overwhelming majority believed that women should taper HRT, with most believing that the best strategy was not only to slowly decrease the dose, but also to reduce the number of days HRT was taken per week. However, they had no suggestions with regards to how to taper use of HRT patches, even though the patch is increasingly being recommended and touted as a safe solution to oral hormone therapy. (Notably, like the evidence from this particular study I am talking about, the evidence that shows the safety aspect of the HRT patch is mostly observational, meaning that it is subject to personal bias.)

More interesting, however, was the finding that the majority of the physicians who participated in the study were more strongly influenced by their personal beliefs than by colleagues’ actions or most importantly, by a woman’s preference. In other words, physicians are not asking their patients about what they would like or if they have any thoughts about stopping therapy. More shocking was the fact that only 2% of physicians surveyed relied on actual evidence to stop hormone therapy. Physicians who indicated that they believed that some action should be taken if symptoms returned after stopping hormones overwhelmingly turned to behavioral changes or exercise, not to alternative therapies such as herbs.

In an era of evidence-based medicine and strategies that integrate eastern and western philosophies, why are our physicians relying on their own personal belief systems rather than real facts? Why aren’t they asking their patients how they feel about stopping therapy or if they have fears about symptoms returning and then thoroughly exploring alternatives ? Are these findings in a vacuum or will they be found on a broader basis? Does the problem lie in fact that there are no standards?  What’s more, why hasn’t the American Medical Association or American College of Obstetrics & Gynecology devised guidelines for stopping HRT therapy? Why hasn’t the Food & Drug Administration demanded this guidance in labeling?

Finally, why do we continue to play Russian Roulette when it comes to women’s health? Isn’t it time for a change?

Let’s start with HRT. There are a lot of folks out there who continue to espouse the benefits, deny the risks and ignore the facts. Clearly, this story continues to unfold. Unsafe medical practices are even more unsafe when they are not backed by evidence, right? Is HRT the exception?  What do you think?

[This post, appeared in part, on Flashfree on May 10, 2010.]

By Stephanie Mensh. House and Senate Appropriations health subcommittees are in full swing this month. On May 5, the National Institutes of Health Director testified to the Senate subcommittee.

I follow NIH funding because they have a leadership role in understanding and treating cardiovascular and neurological diseases. For example, NIH sponsored the recently-reported landmark CREST study comparing surgery to stenting for patients with carotid artery disease related to stroke, conducted in 117 centers over 9 years.

NIH also sponsored historic research on the clot-buster tPA treatment that reduces morbidity and mortality in acute stroke patients when initiated within three hours of onset.  Stroke is the third leading cause of death and the leading cause of disability in adults. So, I assumed that a lot of privately-supported research was underway.

I was shocked and dismayed to hear Story Landis, Ph.D, Director of NIH’s National Institute of Neurological Disorders and Stroke (NINDS), tell the American Heart Association’s lobby-day lunch attendees that pharmaceutical and biotech companies are abandoning research into acute stroke and neuroprotective drugs that could extend the window for tPA treatment beyond three hours.

This means that NIH will be left to develop new treatments. Unfortunately, only 1% of the federal NIH budget goes to stroke.  President Obama’s proposed 2011 budget for NIH is $32 billion. I’m advocating for the American Heart Association/American Stroke Association’s recommendation that Congress appropriate $35 billion for NIH, so more grants can be made for stroke research.

My husband, Paul Berger, had a stroke 20 years ago at age 36.  Paul wouldn’t have qualified for tPA even if it was available back then because his stroke was the result of a ruptured aneurysm dumping blood in his brain, instead of a clot (80% of strokes are caused by clots).  I am very  encouraged to see NINDS support research into other treatments for the acute phase as well as post-stroke rehabilitation.

May is National Stroke Awareness Month. You can find information on stroke warning signs and risks posted to the NINDS website: http://stroke.nih.gov/ .

Even with emergency medical treatment, many stroke survivors will require rehabilitation and suffer chronic health problems—weakness or paralysis in arms and legs, difficulty with speech/language, and problems with everyday living skills.

Strokes affect people of all ages, including younger people who may lose their jobs due to stroke-related disabilities. The sudden, life-changing nature of a stroke impacts the survivor’s spouse and family as well.

To help make everyday better, my husband and I have written 3 new E-Books on stroke recovery just launched by Positive Power Publishing and  StrokeSurvivor.com:  (1) “Conquering Aphasia & Stroke TODAY!”; (2) “Conquering Aphasia & Stroke for Caregivers”; and (3) “Articles to Take With You.”  Excerpts and details are posted at: http://www.strokesurvivor.com/e-books.html.

By Robin Strongin.  Breaking News.  Exciting news for Disruptive Women in Health Care.  Recently, I had the opportunity to meet Kelley Connors and Cassie Holm. Kelley is the creator of Real Women on Health and she and Cassie have created an amazing site. 

Kelley, Cassie and I have a great deal in common, especially our enthusiasm to talk – to share our knowledge and experiences with other women. Kelley is host of Real Women on Health!,  an Internet radio program that has just made the exciting move to TALK RADIO….and they have invited me to  be the show’s DC Health Correspondent, providing “inside the beltway” health policy updates for the Real Women on Health! talk radio show.

Here are the details:  please tune in and join the conversation (call in number is 203-845-3044).  Real Women on Health! will be broadcast at 8:00 pm ET, Wednesdays on News/Talk 1400 WSTC 1350 WNLK (Cox Media Group)  and will also available streaming online starting April 21^st.

 The dynamic one-hour show will be a conversational platform for featured guests and real women to share their collective wisdom and subtle secrets on topics that matter most to them.

By Robin Strongin.  Heads up — the New York Times magazine will be publishing The Estrogen Dilemma this Sunday, April 18th.

Just in time for Disruptive Women’s April 29th breakfast: News (Hot) Flash: Sex, Drugs, and Menopause. (you can register here and of course, MEN are more than welcome to attend.)  We will be showing a sneak peak of the soon-to-be-released movie, Hot Flash Havoc.

Estrogen and Menopause:  Lots of studies, lots of data, lots of unanswered questions.

If you are comfortable, feel free to share your experience with the mother of all hormones.

By Julie Murchinson. The Robert Wood Johnson Foundation-funded program, Project HealthDesign, is pursuing the identification, interpretation and integration of observations of daily living (ODLs). As defined by Project HealthDesign, ODLs are sensations, feelings-thoughts-attitudes, and behaviors that occur in the course of everyday life – such as sleep patterns, diet, exercise levels, pain episodes, and mood – that are not typically part of one’s clinical record, but are critical to managing an individual’s health and guiding their treatment.

During the recent Project HealthDesign workshop, I was struck by the question of what ODLs have the potential to do to engage patients in their health. Will ODLs be the patient’s true representation of issues they own and manage as part of their health or will they be factoids about patients that doctors use but patients don’t truly own? Will ODLs management come naturally or will managing them be an arduous task for the unfortunate individuals who may “need” to manage them? Will doctors be able to synthesize ODLs into clinical practice or will they be too overwhelmed to incorporate another set of information they may not know how to handle or not be remimbursed to pay attention to?  Will ODLs evolve with medical research such that they will be taken into consideration as part of future discovery or will ODLs always be an afterthought left to discovery at the point of care?  Much remains unknown about the fate of ODLs, but there is strong potential for ODLs to be the patient engagement hook in the years to come.

Three big “ah-ha’s” came this week as I listened to grantees develop, describe and integrate ODLs into their research project plan.

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