I’ve spent a lot of time in my professional life knee-deep in articles on healthcare quality and medical information, as well as working with local doctors, hospitals, and health-focused, not-for-profit agencies. As part of this work, I often share information and resources with others to help them choose a doctor. I’ve also spent a lot of time wondering whether anything I knew or said ever made a difference to anyone, or whether people always end up picking the specialist their PCP recommends or just geolocating the practice closest to their house. Does anyone even pay attention to their health or healthcare unless there’s a problem?

Recently, I received an unexpected medical diagnosis (although I suppose most of them are unexpected). It was of the frightening and potentially life-changing variety where you blow through your health plan deductible and out-of-pocket max faster than you can say “hospital johnny.” Suddenly I felt as if I were being put to the test – an almost surreal, multiple choice exam where the wrong answer could have significant consequences. I would soon be faced with important decisions – and would learn first-hand whether anything I knew actually mattered. I’ll share with you a few tips based on my experience, but first, a couple of caveats.

Big Caveat Number One: It’s personal. A big lesson learned for me is that there is no single “right answer.” Choices about treatment approaches or where one receives care can be affected significantly by one’s personal life circumstances. There is a whole truckload of psychological, spiritual, and simply practical aspects that need to be considered. If you know someone going through this, provide guidance and insight, but don’t judge.
Big Caveat Number Two: It’s not always easy. Even if you think you know the right answer, speaking up or acting on your knowledge is sometimes challenging for a myriad of reasons. The subject matter is intimidating, you’re exhausted, you’re stressed, and you’re afraid of making the wrong decision… more great reasons not to pass judgment on others (or yourself).

Now, for what it’s worth, here’s what I learned from my experience:

1. Learn how to be a patient. This may sound unnecessary, because all you have to do is show up for appointments, right? Wrong. Being actively involved in understanding and making decisions about your care can make a big difference in the outcome. For more information about this, see Jessie Gruman’s work. For other resources and tools, you can visit sites such as AHRQ, the US Department of Health and Human Services, or respected organizations specific to your condition (just to name a few).
2. Write it down. With a brief acknowledgement of my Type A personality, I think this is one of the most important things you can do. Shortly after receiving my diagnosis I made a list of everything I needed to do and what information I needed to get. You should also write down questions as you think of them or symptoms as they occur (if relevant). As a practical matter, you’ll probably want to write down most everything because you’ll be lucky to be clear-headed enough to remember your own phone number at a certain point.
3. Use the buddy system. I know you’re an intelligent person, but this simply isn’t the time to “wing it.” Bring a family member or friend with you to all appointments. Give him/her a copy of that list of questions you wrote down so you don’t forget to ask any of them. Ask him/her to write down all the answers. Get his/her impression of the visit and exchange ideas. S/he can also act as your advocate when you cannot.
4. Know where you’re getting your care. Does the doctor or hospital you’re considering using specialize in your condition? How do they perform on quality reports? If you don’t know the answers to these questions, find out.
5. Know your condition. Obtain as much relevant information about your condition as you can. Understand your diagnosis, the risk factors, and possible treatment approaches.
6. Too much of a good thing is, well, sometimes a bad thing. It is critically important that you be an involved, informed participant in your care, but you also want to do your best to limit yourself to research and behaviors that are relevant and helpful. I know it can be a challenge to find the right balance between being empowered and overloading yourself with unhelpful, unnecessarily frightening, and/or inaccurate information, but it’s very important.
7. Reach out. Now is not the time to be shy. Although it’s often difficult to talk about personal health information, a support network is a vital part of making good decisions. In addition to your friends/family, reach out to people who also have your condition (most are very willing to talk about it). Dig deep into your network if needed. Just being able to “talk out loud” to someone can help the decision making process. Use any resource available to you — even if you’re not sure you need it – such as local support groups. You’ll find help in unexpected places.
8. Listen to your doctors. The “s” on the end is important. Unless you have an imminently life-threatening situation and time is of the essence, you will want to talk to more than one doctor in some shape or form. Ask your primary care doctor for guidance. Obtain recommendations from more than one doctor if possible. You may want to get a second opinion on treatment.
9. Listen to yourself. This one is the most important. In the end you’ll need to filter all the information you received from friends, family, others with your condition, doctors, quality reports, and other sources — which will likely be conflicting in some regard. Ultimately, you will need to find a process for evaluating all the information and making a choice about which you can feel confident. Trust your judgment.

Final Exam

For me, the doctor-choosing multiple choice test ended up looking something like this:

Which doctor would you choose?

1. An experienced, qualified doctor whose style and approach you really like and works at a hospital that has a national accreditation in your condition.
2. A doctor who is widely recognized as the best in the area for this condition and works at a hospital that performs well on quality reports, but is not credentialed in your condition.
3. A doctor at a tertiary medical center that is nationally and internationally recognized for providing care for your condition and is two hours away from where you live.

Remember that this is a personal decision, and for that reason I won’t tell you which doctor I chose because it is not necessarily the “right” answer — just the right answer for me. The biggest point is to know that you have a choice and to use some sort of informed decision making process. And, overall, I’m really glad I paid attention before it became a matter of life and death.

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.