By Hope Ditto

For me, November’s Man of the Month needs no introduction (… because he is my father). For the rest of you for whom he is not a genetic relation, here goes…

The Disruptive Women in Health Care team is pleased to introduce our November Man of the Month — Dr. Peter Ditto, Department Chair and Professor of Psychology and Social Behavior at University of California, Irvine and a leading authority on the psychology of advance medical directives and end of life decision making.

Dr. Ditto is best known for the series of studies he conducted examining key psychological assumptions underlying the effective use of advance medical directives, so much so that he was one of the few psychologists invited to participate in the 1993 Squam Lake conference convened to establish a national agenda for research on advance care planning. He is also a member of the Advisory Panel for the American Psychological Association’s Ad Hoc Committee on End-of-Life Issues.

I sat down with Dr. Ditto (who I more commonly refer to as Dad) to learn more about the psychological aspects of end of life decision making, his research on the subject and more.

You often use the Terri Schiavo case  as an example of the decision making challenges families who must make choices about the use of life-sustaining medical treatment for an incapacitated loved one face. In what ways does the Schiavo case encompass your “traditional” case? In what ways does it diverge?

In many ways, the Terri Schiavo case is not at all typical.  She was a young woman who was struck down unexpectedly in her 20’s. Most end-of-life decision making occurs with elderly people, often with a lot of advance warning that a situation is approaching where the person is going to lose decision making capacity. It is actually interesting that the cases that have most captured the public’s attention and most shaped law and policy on end-of-life decision making have involved these quite rare and unusual cases of young people left in persistent vegetative states (Schiavo, Karen Ann Quinlan, Nancy Cruzan). This is likely because these are cases where the issues are displayed most poignantly – a person who has lost the ability to speak for themselves, about whom everyone is uncertain what the incapacitated person would want done if they could speak, and where family members (and public opinion more broadly) have strong and differing opinions about what is the morally appropriate course of action.

But it is important to point out that these are exactly the problems that occur writ small – in less dramatic and less poignant forms – in homes, hospitals and hospices every day in the US. It is typically older people who have become too sick to speak for themselves, have not completed a little will or conveyed their wishes in any way to their loved ones, and this uncertainty can easily lead to family conflict because people have differing beliefs about the person’s likelihood of recovery, and bring different moral views and emotional vulnerabilities to the situation.

You say that, while many think the presence of a living will would have negated what quickly disintegrated into an ugly situation for the Schiavo and Schindler families, it is not always that simple. What steps can people take to avoid (to the extent it is possible) leaving their loved ones in a similar situation?

In many ways, my scientific work on end-of-life decision making can be seen as a psychological critique of living wills. The problem with living wills isn’t the idea – it is a wonderful and noble concept to try to honor people’s wishes near the end of life by having them record those wishes while they are still able – it is the execution. Quite simply, it is just a really difficult situation to find oneself in, and there are no simple band aids that are going to fix it all up. (more…)

More than 1.7 million Americans are currently living with limb loss, and each year, more than 150,000 more face either full or partial amputation. For many of these people, the option of prosthetics proves invaluable, allowing them to maintain their quality of life. And now, other members of the animal kingdom are getting in on the act! As HuffPost’s Weird News reports, Winter the dolphin, of Clearwater Beach, Fla. is one such fortunate recipient of a prosthetic limb. Winter, who lost her tail to a crab trap at only three months old, had her quality of life restored when experts from Hanger Prosthetics were able to successfully design her a prosthetic tail. For her part, Winter earned a starring role in the forthcoming Warner Brothers film, Dolphin Tale.

You can read the full HuffPost story here: http://www.huffingtonpost.com/2011/08/20/dolphin-with-prosthetic-tail_n_927463.html#s330792&title=Dolphins_Fake_Tail

Yesterday, Healthcare IT News reported that a study due out later this month found that the addition of social media tools to online health programs seemed to positively influence the effectiveness of the programs. The study, which is being published in the Journal of Medical Internet Research, found that “adding an interactive online community to an Internet-based walking program significantly decreased the number of participants who dropped out.” This is just the latest in eHealth innovations – from mobile health apps to electronic medical records and so, so, so much more – leaving the medical community wondering how eHealth will fare moving forward.

How do you feel about health-related social networking? Would you join an online health program? What concerns – privacy, quality of service, etc. – do you think this presents?

Read the full text of the Healthcare IT News post here: http://healthcareitnews.com/news/social-media-tools-may-reduce-attrition-online-health-programs

The sky is the limit it seems when it comes to mobile health. Proving once again the myriad possibilities for that smartphone apps present to every facet of the health sector, Orca MD — a company dedicated to producing apps aimed at educating patients and helping them find the most effective treatment for their ailments — just released two new patient education apps – these focusing on cosmetic procedures.
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By Jane Sarasohn-Kahn. Patients who perceive their visit to the doctor was patient-centered, with more communication, receive fewer diagnostic tests and referrals, and yield lower expenses for diagnostic testing. A new study finds that patient-centered care leads to lower spending on health care over one year of care due to fewer specialty care referrals. A contributing factor to lower costs is increased patient participation during the visit, which reduces patients’ anxiety and perceived need for further investigations and referrals. In the milieu of more effective patient-physician communication, physician gets more knowledge about the patient. This brings greater trust between patient and doctor, as described in Patient-Centered Care is Associated with Decreased Health Care Utilization, published in the Journal of the American Board of Family Medicine published in July 2011, and penned by Dr. Klea Bertaks and Dr. Rahman Azari.

This is not a new concept: ten years ago, the IOM’s seminal report, Crossing the Quality Chasm: A New Health System for the 21st Century, called for “patient-centeredness.”

What is patient-centered care? Bertakis and Azari call out four communication behaviors:

1. Eliciting understanding and validating the patients’ perspective
2. Understanding the patient within his or her psychosocial context
3. Reaching a shared understanding with the patient of the problem and its treatment
4. Creating a partnership in which “activated” patients share in decision making, power and responsibility.

These four precepts were codified in a 2007 publication from the National Cancer Institute, Patient-centered communication in cancer care: promoting healing and reducing suffering.

Health Populi’s Hot Points: Adopting a patient-centered approach isn’t solely about reducing health care costs: it’s about patient empowerment, effective communication between doctor and patient, and participatory medicine. The secret in this sauce is in the communication between the partners: greater sharing of information from each side of the conversation, building greater trust, and leading to a decreased use of unnecessary diagnostic testing, hospital care, and specialty referrals. While long-term outcomes haven’t yet been quantified in the patient-centric approach, this study adds to the growing evidence base that participatory medicine is a win for the patient, a win for the physician, and a win for the larger health system and health economics.

Originally posted on Health Populi on July 19th.

The following ran on May 26th as a part of CNN Health’s coverage on the empowered patient. It is written by Elizabeth Cohen.

By Elizabeth Cohen. As much as she would like to, Dr. Lissa Rankin, a gynecologist, will never forget the woman who planned her wedding while lying naked on her examining table.

“Every 15 seconds, her cell phone was going off, and she was answering it!” Rankin recalls. “It was like, ‘That’s not the cake I ordered,’ and, ‘No, it’s the other gown,’ and I said to her, ‘Is this a bad time? Should I come back later?’ ”

The bride may have been doing great things for her wedding, but she was sabotaging her own care — and it was a really important visit, as she was newly pregnant.

Talking on your cell phone in the examining room, forgetting what medicines you take and lying to your doctor about your personal health habits are all ways of compromising your health.

“The doctor-patient relationship is like a business partnership,” Rankin says. “We need to work together. Trust me to guide you but be willing to do your part.”

From interviews with a gynecologist, a cardiologist, a rehabilitative medicine specialist, a fertility doctor and an internist, here are the Top 10 things patients do to mess up their own care.

1. You talk on your cell phone.

This is your health we’re talking about. Other calls can wait. Turn the thing off.

2. You lie.

“I need to treat you the best way I can, so if you’re gay, tell me. If you drink a bottle of tequila every night, I need to know. If you’re having an affair and not using condoms, let me know,” says Rankin, who blogs at “Owning Pink.” “I promise I won’t judge you.”

3. You do a sloppy job describing your pain.

Is it stabbing or burning? Sudden or constant? Tingling or hot? The answers will help your doctor make the right diagnosis.

“You should describe the exact location, how intense the pain was, what provoked it and how long it lasted,” says Dr. Nieca Goldberg, director of the New York University Women’s Heart Program.

The week before your appointment, keep a diary of your pain and your other symptoms, too, advises Dr. Loren Fishman, a clinical professor of rehabilitative medicine at Columbia University College of Physicians and Surgeons. He suggests using this time to also think about the questions you want to ask your doctor and what you hope to get out of your appointment. (more…)

By Regina Holliday. On the evening of Tuesday June 7th 2011 the Kaiser Permanente Center for Total Health, located beside Union Station in Washington DC, will become a gallery for one night. 

We won’t pound a single nail into the walls to hold the art.  This shall be The Walking Gallery.  That night dozens of people will walk into the space wearing business jackets or doctor’s lab coats.  That alone is not unusual.  It would be a daily occurrence in this dual-use space.  But these jackets will be works of art.  Each one shall be painted with the story of a patient or an element of medical advocacy by me or another artist.  These masterpieces will be worn on the backs of government employees, technology gurus, medical professionals, social media activists, CEO’s of companies and artists.  It shall be a great meeting of the minds.

The Walking Gallery will happen 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.  Jen was one of my first followers on Twitter and is such a glorious spark of life.  

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.  Jen responded, “Symbols and talismans mean quite a bit to me, and having things constructed by friends is one way to remind myself why I do the work I do and forego so many of the other things I enjoy.  I’m so happy to have a wearable badge of courage – just wrote an index card for myself to remind me of the importance of patient advocacy by “any means necessary.”  Art is another one of those means.”

I finished the second mural “73 Cents” on September 30th 2009.  It was my feverish obsession in the weeks after Fred’s death.  “73 Cents” was a thing that I had to do.  It soothed my soul; it spoke to me and calmed my aching heart.  It gave me a reason to leave the solitary confines of my mind and my widowhood.  It gave me permission to stand on the street and talk with complete strangers about the grief roaring within me.  I often go to social justice events and hear about the chronically homeless on the street.  I hear workers complain that they find small single apartments for these folks to live in, but instead many return to the street.

I think I know the reason why. 

It is hard to be alone when sadness is engulfing the mind.  The street is alive, and there the broken congregate and help each other.  Each day I painted I made many new friends, but those who came back and spoke to eye to eye were often the most dispossessed and the homeless. 

Without Jen’s suggestion that I paint jackets, I would have gone home, my Magnum Opus done, to loneliness and grief.  Yes, I was still blogging, but that was not enough.  I had to paint.  I had to spread the word through art.  Jen had provided a new “wall,” and that wall could walk into the Mayo clinic or the National Board of Medical Examiners and remind everyone of those patients who suffer in a system without real time data access.

I would paint and post images of three jackets for Jen:  “Data Prison” on October 5th 2009, (more…)

By Glenna Crooks. Having been engaged in rare disease research and orphan drug development for many decades and as one who continues behind-the-scenes to encourage the work, events of the last few weeks about Makena’s launch sent chills through me. 

The firestorm that followed created some heat but none sufficient to help relieve the shivers. Others might declare the outcome a “win” but the more I read, the worse it seems. I’m not privy to what really happened, only what the press reports. It does not look good… for virtually anyone of the players involved, especially the critics. 

Those critics raised tough questions and to date only the company has faced them. It’s about time the critics themselves –and perhaps others as well – face some.   

For those who’ve missed the story, on February 3, 2011, the FDA approved a drug intended to reduce the risk of certain pre-term births in women who’d already had at least one pre-term birth. 

In truth, a number of treatments are already available for women in this situation. None of them sound easy. They include certain other medications (including IV medications) and restricted activity (like bed rest) that prevent women from going to work, making meals or providing care for other children or family members. Oh, and they can’t have sex, either. In some cases, women are hospitalized and, when all else fails the birth is premature. If they survive, the babies then receive care in neonatal intensive care units at the high costs we all know and frequently bemoan. 

One of the treatments already available was an injection that compounding pharmacies—perhaps one down the street from you—made at a fairly low cost. Though there is no indication the FDA had concerns about this particular pharmacy-compounded product, the American Journal of Perinatology in March 2009 reported on a study of OBs saying they were “very concerned;” apparently it made care for these women more difficult. Perhaps understandably, the women did not want to take a product the FDA had not approved. Add to that, other FDA studies had indicated a third of pharmacy-compounded products (in general) had doses higher or lower than the physician prescribed. Perhaps that is why FDA was interested in a product they could regulate.     

NIH had been interested, too, had studied the drug in question and apparently found it was effective and prevented premature labor. 

Somehow a company got involved, but then it sold its rights to another company. Press reports don’t say why. That second company bought the rights, paying $92M up front and promising another $107M in payments over time. 

The second company then committed over $250M, including more than $60M in research and clinical trials involving multi-year follow-on studies of 1,700 mothers and 500 babies. The second company says the studies were four times larger than the previous NIH studies and twelve times more expensive. When it appeared the FDA would approve their version, they built relationships with specialty pharmacies to make sure that patients could get access, set up patient assistance programs and started the launch.  (more…)

Donna Cryer, JD

The following is a guest post by Donna Cryer CEO of CryerHealth.

By Donna Cryer, JD. There are countless articles and books on innovation – incremental innovation, radical innovation, disruptive innovation.   I would argue however, with a nod to the authors of Blue Ocean Strategy, that unless innovation is value innovation, providing some deliberate and distinguished combination of factors or service to improve the experience or effectiveness for relevant stakeholders, while reducing costs, it is not innovation at all, but simply something new.

That said, I am eager to make the case for personalized medicine as a value innovation.

The most common definition of personalized medicine is genomic-based risk assessment, diagnosis, treatment.  Personalized medicine, broadly construed, also comprises technology-supported medical practice able to aggregate data on a population level to a degree that positive or adverse outcomes can be spotted in sub-populations of patients.   Personalized medicine also provides for care in the context of an individual’s culture, values, and health literacy levels.  The uniting concept is a health care framework that gets the right treatment for the right patient at the right time, creating a safer, more effective, more cost-efficient health care system.  Think of personalized medicine as producing Me drugs rather than Me-too drugs.

The value of personalized medicine is best perceived using a systems view of cost and experience across identification, diagnosis, and treatment of a disease.  Imagine oncology today without personalized medicine:  A young woman would not know that she has a genetic predisposition to a cancer, (especially if she has no family history to raise red flags). Because neither she, nor her physician have this personal genetic information available, they do not start an early or aggressive schedule of mammography or other screening. A lump in her early 30s is dismissed. When she does develop cancer, there is no way of determining what type of specific cancer it is; she is given a treatment she does not respond to; other treatments are attempted, but ultimately she dies.  Without personalized medicine to help inform her health care decisions, the cost of her care is needlessly expensive and the clinical outcome is tragic.

The greatest threat to continued value innovation in personalized medicine is the lack of coherent reimbursement and regulatory frameworks that recognize the value of genomic-based diagnostics and therapies. (more…)

By Grace Bender. Everyone needs to be their own healthcare advocate.  I realized this when I noticed my mother struggling to manage the numerous medications she was taking. With so many prescriptions and over-the counter medications to keep track of, I was concerned about her taking the correct dosages at the correct times and following all the various instructions.

So I decided to create a medication chart that allowed her to track her medications more easily and ensure she was taking them correctly. We then showed the chart to each of her physicians and pharmacist.  The result was a dramatic change in my mother’s medication regimen.  The chart enabled her physicians to view what they and all her other doctors were prescribing. They soon realized just how many medications she was on and that some medications were actually counteracting others.  Many prescriptions were changed or stopped and over time she went from taking 16 medications to nine.

Adverse events related to medications are the fourth leading cause of death in U.S. for patients over the age of 65.  This startling statistic led me into the patient-advocate role.  Since that time my own experiences have continued to reinforce my belief that individuals need to take control of their health and work to make sure all their healthcare providers, caregivers, and/or family members are working together as a team.

After being faced with several health scares in 2008, I decided to have an MRI breast scan for peace of mind.  I had learned that the scan was the best diagnostic and screening tool for women with large, dense breasts and a family history of breast cancer.  Since I had a mammogram six months earlier, which was normal, my physician did not think the MRI was necessary.  However, I decided to have one to be certain I was breast-cancer free.  To everyone’s surprise, the scan revealed three spots that biopsies confirmed to be multifocal breast cancer.  Since I knew my own body and had educated myself about available screenings, I may have saved my life because I was told a mammogram might have taken years to pick up the spots. This may not be the right course for every woman, but everyone should know that this tool exists. (more…)

Tomorrow, Thursday, August 5^th from 12:00pm – 1:00pm EST Disruptive Women Trisha Torrey, Guide to Patent Empowerment, About.com  (http://patients.about.com/) and quoted in this month’s “O” Magazine, and Regina Holliday http://reginaholliday.blogspot.com/) , medical advocate and muralist, painter of “73 cents,” a depiction of challenges she faced to acquire her late husband’s medical records as he struggled with cancer (“73 Cents” also cover of British Medical Journal 9/09) will be featured guests on the Disruptive Women in Health Care and Real Women on Health Radio! blog talk radio show. The topic for the show is “Patient Empowerment: How to be Your Own Best Advocate.” 

There are two ways to listen and/or participate in what will be fascinating conversations — listen online at http://www.blogtalkradio.com/realwomenonhealth or call toll-free (646) 929-2625.

And speaking of Patient Advocacy and Empowerment, Disruptive Women in Health Care is working on its next e-book which is all about Patient Advocacy.  Start looking for posts later this month.

If you have stories or tips to share on this subject, we invite you to send them in.

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 Joy Burwell. On Monday, June 7th Health 2.0 took over Washington DC and yesterday the excitement continued with a Disruptive Women in Health Care breakfast. The breakfast would not have been possible without the generous sponsorship of Manatt and the support of The Hill. A huge thank you to this morning’s engaging panelists: Fran McMahon, Publisher of The Hill; Indu Subaiya, Co-Founder Health 2.0; Julie Murchinson, Manatt Health Solutions; Alexandra Drane, Founder and President, Eliza; Marlene Beggelman, Founder, Enhanced Medical Decisions and Linda Von Schweber, Co-Founder Surveyor Health. Robin Strongin, Creator of the Disruptive Women in Health Care blog moderated the program. Below is a very brief summary of the discussions; video and photographs of the breakfast will be posted soon.

L to R: Julie Murchinson, Robin Strongin, Indu Subaiya, Fran McMahon

You may be asking what the term Health 2.0 means and luckily for you Indu Subaiya Co-Founder of Health 2.0 provided us with an answer. Health 2.0 applies the same social networks and user-generated focus as Web 2.0 (which has been around since 2003) to the world of health care. It began as a consumer-driven movement with providers becoming involved a bit later. More recently the concept has grown as a result of its partnership with health care reform. Another noteworthy aspect is its ability to foster data-driven decision-making. Currently, there are about 1000 companies actively engaged in Health 2.0.

Bottom Line: Health 2.0 gives you (the patient, caregiver, provider, payer) the tools to be able to get the information to make better decisions.

To better illustrate Health 2.0, the panelists discussed their companies’ developments. Dr. Marlene Beggelman founded Enhanced Medical Decisions which developed an online medical solution that uses “natural language” search technology, to enable users to quickly and easily find accurate information on drug interactions and reactions.. Linda Von Schweber the Co-Founder of Surveyor Health discussed their software’s ability to create an online medicine cabinet for consumers where they can learn the various side effects and interactions of the drugs they are taking. Eliza Founder and President Alexandra Drane detailed the personalized voice-based service they developed that helps consumers make better health care decisions. All of these technologies are innovative, put consumers in the driver’s seat and support efficient, safe and quality health care.

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By Robin Strongin.  Congratulations to our colleague, Sharon Terry!

Sharon was recently announced as an Ashoka Fellow for improving health outcomes for patients who have genetic diseases by aligning incentives and structures so that they facilitate, rather than obstruct, the continuum of research, drug development, treatment, advocacy, and support.

Ashoka is the largest association of leading social entrepreneurs in the world that strives to enable the world’s citizens to think and act as changemakers. Working in over 60 countries around the globe in every area of human need, Ashoka Fellows demonstrate an unrivaled commitment to bold new ideas through a combination of compassion, creativity and collaboration. Fellowship is a distinguished lifelong position attained only after a rigorous selection process.

You can share Sharon’s Ashoka journey by following her on Twitter at @sharonfterry.  She will also be blogging about her Ashoka experiences on Disruptive Women.