Dr. Charlie Burger

Dr. Barbara Crowley

Patty Roy, RN, MSN, CPHQ

Dr. Richard Engel

Dr. Jeffrey Heckert

Dr. Frank Bragg

Donald Krause, MD
Director of Quality Improvement
St. Joseph Hospital
Bangor, ME

“I was starting to have a Stage 2 asthma attack. Once you get into a Stage 2 asthma attack inhalers aren’t effective.”

When Rick G. suffered a stage 2 asthma attack while travelling on business, he realized that he needed to talk with his doctor about changing his medication. In this short video, Rick tells his story and offers some helpful advice for talking with doctors.

Chesley is a resident of mid-coast Maine. Two years ago at the age of 28, she was diagnosed with breast cancer and found out shortly afterwards that she was pregnant with her second child. Not willing to let others make important decisions for her, she and her husband undertook the challenge of finding the best specialist for her situation. She believes their story is important to share with other people in our community.

This doctor is going to determine if I live or die and I’m not going to ask him how much experience he has with my type of surgery. . . because he might be offended? That’s crazy!

I felt a lump in my breast while getting dressed. It was one of those moments that you read about where people say they “instantly knew” that something was terribly wrong. Because of my young age and little family history of this problem, I was made to feel that my concerns were not justified – up until the ultrasound and the biopsy confirmed that I had cancer.

My husband I immediately began finding out everything we could about my type of cancer. We believe in research and arrived with a notepad full of questions. From the diagnosis forward, we were going into battle and I needed to know more.

The first doctor had done a great job on the biopsy but now we were entering into a new area. I realized that he did a lot of different types of surgeries but he didn’t specialize in breast health, so we began looking for people who did.

Did it take courage to ask these questions and advocate for yourself?

Getting your questions answered can be an exhausting process. I’m the talker in the family so my husband took lots and lots of notes. If I would forget to ask something, he would remind me. You need somebody there to help. Someone who knows how you want things handled if you’re having an bad day.

When I told my mother about the hard questions that I was asking, she was horrified. Her generation didn’t question doctors – they were put on pedestals. I believe there are many wonderful doctors who go into medicine because they care deeply about their patients. That doesn’t mean that you can’t appreciate their hard work and sacrifices AND look out for yourself.

They need to listen to your concerns. If a doctor becomes offended, their main concern is not with you, its with them and you shouldn’t be there. This doctor is going to determine if I live or die and I’m not going to ask him how much experience he has with my type of surgery … because he might be offended? That’s crazy!”

Advice for people who find themselves in the situation you and your husband were in?

Take responsibility for yourself. I hear about decisions being made on people’s “behalf”. You need to be making decisions based on information from your doctor and your own research. You need to be careful about where you get your information but you have to feel good about the decisions you make. This is one of the biggest fights you will have in your life. Are you really going to let somebody else do it for you?

Thomas Claffey, M.D. received his undergraduate degree at Boston College and his MD at the University of Vermont in 1970. He completed his residency training at the University of Iowa. Dr. Claffey practices internal medicine in Portland and is Medical Director of Internet Group.

Michael Albaum, M.D. received his undergraduate degree at Yale University and his MD at the University of Pittsburgh. He completed his residency training at the University of Pittsburgh Medical Center. Dr. Albaum practices internal medicine and is Medical Director of the PrimeCare Group in Southern Maine.

What changes in healthcare do patients need to understand to get safe, quality care?

Dr. Albaum: In the past, doctors primarily treated short term problems such as infections or injuries. These problems were typically over quickly for better or worse. Today, more patients suffer from chronic conditions such as diabetes, heart disease, asthma. In part this reflects the aging of the population; in part it reflects improvements in healthcare allowing us to effectively treat a greater range and severity of problems.

Managing chronic illnesses requires a new relationship between doctor and patient. Our goal is to provide the patient with the tools to better self manage their health problems. The role of the physician is that of a facilitator, educator or coach.

We also have more information about what interventions are effective. Clinical trials have shown us which treatments are helpful and which aren’t for a wide range of conditions. For many chronic conditions Clinical Guidelines outline the current state of the art care.

Doctors, nurses, and patients need to work together as a team to ensure that the newest information is available and that recommendations that have shown proven benefit are being acted on.

Dr. Claffey: The whole thrust of medical care delivery going forward over the next 10 to 15 years is going to be to move the responsibility for health from the provider to the patient. Patients need to understand that a lot of the outcome of their health care depends on what they do. Patients have to get adult about this. They can’t come to the system and say, I want to be able to do whatever I want, and when I get sick, I want you to fix it in two days, for no cost, and I want the result to be perfect all the time. I think it’s marvelous that people are out there learning about the diseases they have, finding out what they need to do, and finding out what questions they ought to be asking.

So what’s the role of clinical office systems in all this?

Dr. Albaum: My vet sends out a card every year that the cats need their shots. My dentist sends out a card telling me that I’m due for a cleaning. Those are examples of systems. An example of an office system would be tracking who hasn’t been in for a physical in the last year or two. It would be a reminder of what an individual patient is due for at the time that I see them in the exam room, as well as broader reporting about where my whole population of patients with a given diagnosis stand..

At my group, PrimeCare, we recently created a computer network so we can communicate with every doctor, nurse, front desk person and office manager. That’s step one. Step two is going to allow us to start collecting data about how we’re doing with disease management, and bring everybody up to a better degree of compliance with best practices. Doctors are dependent on information for everything we do, and yet we’ve been one of the last groups to incorporate information technology. A doctor’s paper chart is not a very good tool for rapidly determining if a patient’s care is optimal. It doesn’t allow me to know what’s happening with people that aren’t right in front of me in the office.  What I ask of an office system is: Do the tools I have meet my needs and my patients’ needs for information?

Dr. Claffey: My view is that the whole disease management thing is about setting up and making operational, systems that care for patients. You really ought to be interested in whether or not the physicians you’re dealing with are part of the process, are interested in advancing chronic disease management in a way that standardizes how the care is delivered. In Maine, I think, we haven’t developed a systems-based approach to care. We have to start some place and measure the results. You might call a practice site manager and say: “I have diabetes or I have heart failure. What systems do you have in place to help me manage those things in addition to my visit with the doctor?”

How will paying so much attention to clinical office systems help patients get better care?

Dr. Albaum: One of the things I can tell you is that a computer network makes it easier for people to start doing things in a collaborative way. For example, in the past, our obstetricians, our doctors who deliver babies, didn’t have a lot of information at their finger tips when they were on call. We have a system now where they can take it from the computer network and download it onto palm pilots they have at home(information about each pregnant woman such as their due dates, any complications they’ve had in the past, problems with the pregnancy. So when a patient calls in the middle of the night, our doctors have the information they need to provide good care.

One of our initial quality improvement efforts was a low back pain project. All our patients with low back pain got the same information from everyone who cared for them. And we got them to specialty care (to a spine center) faster when they needed it. The success of this project got all our providers to see how helpful these systems could be.

Now we’re also setting up a diabetes database that’s going to have all our patients with diabetes in it. It’s going to allow us to see how good a patient’s control is, who is overdue for a test or an office visit, and how our entire population of diabetics is doing over time

Dr. Claffey: I think the best part of this (the MHMC systems project) is that the insurance community and the employer community and the provider community are sitting down around the table and trying to work out how you make the system better – how you make care better for employees, and that involves a lot of complex things. It involves changing processes among the providers. It means changing thinking on the part of the insurance companies and the employers. I think for me, the importance of this process is that we’re all doing it. We’re having these discussions and we’re chewing these things through.

What about the future and the role of patients in shaping that future?

Dr. Albaum: Here’s what I hope a really good office system will be able to do for me and my patients down the road, maybe in 5 years time:

• I have access to all my patients’ information electronically, so I can get it if I’m on call at night, or at the ER, or whenever I need it.
• I can write prescriptions and have them checked for drug interactions with the other medicines a patient takes and then have it go off to the pharmacy electronically. No more hand written prescriptions for the patient to carry.
• At every patient visit, I can check that we are working together to follow best practice care, that we are doing what research shows is best to keep the patient well.
• I get reminders about patients that are not coming in for care, so we can follow up with them.
• I have the ability to look at data on my population of patients so I can screen who is due for tests, exams, immunizations.
• Everyone in the practice has appropriate access to patient care information, so we can work as a team. And I can easily send this data to specialists outside the office.
• I can create information for patients at the push of a button, so they leave the office with clear instructions about their own self care.
• Patients can email the office with requests for appointments, medicine refills, and simple questions.

It takes a lot of time to learn these systems. It’s a quality improvement cycle. But we all need to understand that things aren’t necessarily as good as they could be. I think patients let their doctors off the hook for a lot. I think patients should ask what clinical office systems are in place to ensure compliance with best practices. Currently, I think it’s rare that patients ask that.

Dr. Claffey: My view of this project and the whole thrust around disease management is that I think we’re going to incent providers and payers and employers to set up systems that will standardize the delivery of care for chronic disease. So patients will be more likely to get care based on the best research wherever they go. We’re starting from point A, where we have patients being taken care of in a number of different ways. Hopefully, providers can offer more resources to patients so they understand what they have to do and then get involved in making more decisions.

It’s going to take some time to get these things done. In other words, even though we’re embarked on a diabetes management project, it’s going to take us time to put together a registry, figure out who the diabetic patients are, make sure they’re all getting hemoglobin A1c tests done and then work on whether these are at the right level. That doesn’t happen in the blink of an eye.

My view is that the important thing is that people are participating. Patients looking for healthcare could look for those medical practices that are interested and committed to doing whatever’s necessary to make sure they’re delivering a quality product. What I would imagine would happen over a period of time is that employers will be able to identify groups of providers who have demonstrated a commitment to quality healthcare and are putting in place systems that will work.