What do you think: Are there lines that patients shouldn’t cross?

On Monday, DiabetesMine and the California HealthCare Foundation launched the 2010 DiabetesMine Design Challenge. Last year the contest garnered more than 150 entries and awarded a grand prize, a “most creative” prize, and a kids’ category prize. I can’t wait to see what people come up with this year — please help spread the word.

Today, Project HealthDesign announced the five winners of their two-year grant and mentorship program aimed at encouraging the use of observations of daily living (ODLs) into clinical practice.

Patti Brennan, Project HealthDesign’s national program director, wrote:

Our premise is that ODLs can help unlock information that is typically not part of the clinical experience – but that providers and patients absolutely need to be talking about. To help us test this with real people and real providers, we have selected five outstanding grantee teams for an intensive two-year demonstration projects to test whether and how information – such as the stress levels of caregivers of premature infants and medication or cooking routines of seniors at risk of cognitive decline – can be collected, interpreted and acted upon by patients and clinicians in real-world clinical settings.

I am honored to be on Project HealthDesign’s national advisory committee, although I should hasten to say that because of the Pew Research Center’s strict policies I did not vote for or against projects. I did, however, read proposals and participate in the debates about the merits of each one. The process was a highlight of 2009 for me. There is no shortage of excellent ideas, each of which strives to create a more participatory future for health care.

DiabetesMine and Project HealthDesign are just two examples of how design is taking center stage in health care initiatives.  What else are you seeing?  What else needs to be done?  How else can the field rise to the challenge that Jamie Heywood articulated at TEDMED:

“Wouldn’t it be great if the technology we used to take care of ourselves was as good as the tech we use to make money?”

As promised yesterday, here is Amy Romano’s guest post for our series leading up to the Oct. 21 launch of the Journal of Participatory Medicine.  Amy is a nurse-midwife and advocate for mother-friendly maternity care. An expert in research analysis, she manages the Science & Sensibility blog for Lamaze International. Follow her on Twitter: @MidwifeAmy.

If you’d like to propose a guest post topic, contact me.  Amy’s post:

What if we could help a large population of highly motivated, influential health care consumers become empowered, engaged, equipped, and enabled? And what if they could develop these skills while they were healthy – before they face life threatening illnesses or need to manage chronic conditions? What if transforming the way these consumers participated in their care could reduce the burden of one of the most costly conditions in our health care system and improve the health of millions of people each year?

It’s all possible – if we make maternity care more participatory.

Eighty five percent of U.S. women will give birth in their lifetime, and about 4.5 million of them will do so in the next year. Engaging these women in their own healthcare in pregnancy and birth could have major implications:

• Public Health Impact: Engaging one consumer for better health benefits two people (or more, in the case of multiples). Missed opportunities to promote health in pregnancy can have lifelong consequences for babies, and increase risks in future pregnancies.
• Quality Improvement: Informed, actively engaged consumers could help curb the overuse of ineffective and potentially harmful obstetric practices, increase utilization of beneficial forms of care, and rein in unwarranted practice variation.
• Prevention of Chronic Disease: Pregnancy or childbirth can trigger the onset of new chronic conditions in women, such as ongoing pain, obesity, high blood pressure, incontinence, and mood disorders. With coordinated, individualized care and active patient engagement, these conditions often can be prevented or efficiently managed.
• Cost Containment: Maternal and newborn hospital charges ($86 billion in 2006) far exceed those of any other condition. If patient engagement led to even modest cost savings, the impact on the overall cost of healthcare would be significant.
• Improved Health Literacy: Women will go on to make health care decisions for themselves and their children. According to the e-Patient White Paper, many will also engage in healthcare decisions of other family members and loved ones. Pregnancy can be a time when women become savvy healthcare consumers, and gain confidence to find and interpret health information, engage in shared decision making with healthcare providers, and manage self-care.

Childbearing women are also an ideal population to adopt innovative participatory health care tools, because they’re already online and highly connected in social networks. A national survey of women who gave birth in U.S. hospitals in 2005 reported that

• 76% of childbearing women turned to the internet for information about pregnancy and birth.
• 1 in 6 first-time mothers and 1 in 8 experienced mothers rated the internet as their most important information source.
• One in 5 women who used the internet at all for pregnancy and birth information reported doing so at least 100 times.

Four years later, the number of pregnant women online and the intensity of their online engagement have almost certainly increased. In fact, a new survey suggests that maternity care consumers are driving much of the social media activity among hospital patients aged 25-34.

Unfortunately, a “doctor knows best” attitude prevails in most maternity care settings. Rather than honing their skills as effective, engaged consumers, women are learning to be passive recipients of standard protocol.

Health outcomes, not surprisingly, are wanting. Indicators of maternal and newborn health – rates of cesarean section, low-birth weight, prematurity, and perinatal and maternal mortality – are getting worse or stagnating at unacceptable levels.

Maternity care will only improve when women claim their autonomy and participate in maintaining and managing their health. The payoff would be immense: healthier mothers and babies and a population of healthcare consumers ready to take control of their health, make informed choices, and use the tools that keep them engaged and connected.

The author is Amy Romano @MidwifeAmy, a nurse-midwife and advocate for mother-friendly maternity care. An expert in research analysis, she manages the Science & Sensibility blog for Lamaze International.

Amy found us through social media, pure and simple: she was out there doin’ her job, chasing interesting chains of followers, and ended up here. She read the white paper and immediately saw that it’s a perfect fit for what she’s up to. Look: social media brought together a growing idea and a constituency that’s ready for it.

Running with the ball herself, she’s now written perhaps the most profoundly innovative post I’ve seen since I first discovered the e-patient movement: she observed that almost everything in the e-patient white paper is about disease. And as the Lamaze people are well aware, a whole lot of healthcare goes on in (what should be) the non-pathological area of maternity and birthing. And those moms-to-be just happen to be in the actively-engaged online demographic: a perfect setup for participating e-patients.

Hold onto your hats, folks. This is a good one. :–)

Update: Amy’s post is here.

I am a 12-year leukemia survivor and very grateful to the ACOR community members who helped me numerous times along the way.

I have dedicated my life to creating community online and also, in a supplementary way, on radio. But my concept of community is a bit different. I believe it should not be seen as patients doing their own thing because doctors didn’t either listen to them or give them enough time – or lacked knowledge. I believe patients, caregivers AND specialists/researchers can easily be in ONE community together toward a common goal of better health for current patients AND future ones.

If you look at my little home-grown site, www.patientpower.info (with generous support and cooperation from the nation’s top medical centers AND their patients), we have brought together inspiring patients and renowned experts in a dialogue. In a few weeks we will add P2TV, much like CNN’s I-reports where patients will send in videos of their stories and also their questions. I am hopeful it will take off. And I am actively working to partner with community folks like Trusera and medhelp.org to form a union, in Health 2.0, of patients AND health care professionals who have devoted their lives to those same health concerns.

As an aside, I know the M.D. Anderson docs read patient comments on ACOR lists. They often know what a patient like me is saying BEFORE I come to see them. So the phantom community of patients and docs has been there a long time. Now I am working to make it all transparent.

Here are our current top 5 programs that illustrate patients and doctors working together:

1. A Team Approach to Treat Advanced Lung Cancer

2. Robotic Myomectomy: Treating Uterine Fibroids While Preserving Fertility

3. Advances in the Treatment of Bladder Cancer

4. Cell Phones & Brain Tumor: Should You Worry?

5. Cancer in Young Adults

(Note from Susannah: Take the time to listen to a few of these shows — they are a high-quality example of the long tail of podcasts. Big extra points from me for posting not only the full-length audio but also a PDF of the transcript.)