Please note that this was originally intended as an oral presentation and is not formatted for reprint as a text document.

Good morning. I'm glad to see you all here, in fact, I'm grateful to see you all here. My name is Rebecca Bryson and I am a patient representative on the Core Team. Today, I am going to:

1. Give you some background on me as a patient in the health care system. 2. Give a few examples of problems that I've had because of the way health care is currently provided. 3. I'll give a couple examples of how our new patient-centered vision of health care solves problems for patients. 4. And finally, I'll then talk about how I've participated as a patient representative on the Pursuing Perfection Core Team.

Background To put my talk in context, I'm going to start with my conditions and identify my care team:

* I was diagnosed in 1994 with Type II diabetes. For the past eight years, with the help of my general practitioner, I've maintained good glucose control through diet, exercise, and one oral medication. * Last March, the adventure began. I had an unexplained GI bleed that resulted in iron deficiency anemia. We don't know why, but my system didn't respond to iron supplementation. Added to my care team were a gastroenterologist for the GI bleed and hematologist for the anemia, and I got three new medications. * In July, I was diagnosed with idiopathic dilated cardiomyopathy and Class IV congestive heart failure (CHF). While I was hospitalized, I got the hospital team, a cardiologist and six new meds. * Because my heart was working at about 15% efficiency, I was oxygen deprived. I couldn't stand or walk for more than one minute, and I had a lot of problems with concentration and attention to detail. I couldn't drive, make a sandwich, or even comprehend what I read. My husband became a crucial member of my care team. In addition to working a full-time job, he managed my medications, took me to all my appointments, helped me shower and dress, and took over all the responsibilities of our day-to-day life including meals, housework, shopping, everything. * In August, I was assigned to a congestive heart failure Care Manager. I'm going to talk more about her later. * In November, I received a biventricular pacemaker and a cardiac electrophysiologist. * In January, I started cardiac rehabilitation, and the cardiac rehab staff became part of my care team. * As you may have guessed, my pharmacist is definitely part of my care team. * The last (or first) member of my care team, depending on how you look at it,is me.

That makes eleven of us on the care team and ten different medications.

Challenges (system-centered)--Some challenges that I've experienced within the health care system:

I started working on the Pursuing Perfection Core Team just prior to receiving my pacemaker. Since then, I've been paying special attention to the strengths and weaknesses of the current health care system. First I want to say that, overall, I have received wonderful, underline wonderful, care both in the hospital and as an outpatient. I am the first to acknowledge that I owe my life to the dedicated health care professionals in our community and am truly grateful for them.

That said, I'd like to give you a few examples of challenges I've encountered because health care is currently system-centered rather than patient-centered:

* Medical Records--Right now, the system is that every healthcare provider has a separate record for me. Every time my cardiologist or any provider makes a medication or dosage change I am given a burden. The cardiologist and the pharmacist know the change, but I either have to call all seven of the other providers (medical members of my care team) and ask them to update their records, or I have to remember from appointment to appointment who knows what? Did I tell the hematologist that the Coreg dose went up again? Did I tell the GP that I only take Lasix now as needed? After my pacemaker surgery, I developed an allergic reaction to the DermaBond used to close the wound. I had to call each provider to have them add DermaBond to my list of allergies. As a patient I worry, What if a doc doesn't know my current medications and dosages? What if they don't have a correct and complete list of my allergies? The last time I was in the hospital, I had six medication errors in three day. How can this be avoided or minimized? The current process supports the system within each provider location; it doesn't support the patient.

* Gatekeeping is another issue that is a real challenge for me. The gatekeeping that is inherent in the current medical system is extremely frustrating for patients. In order to be seen by a physician, even in an urgent situation, I have to tell my story and make an argument to convince the receptionist. If the receptionist is convinced, she leaves a note for a nurse. The nurse may return the call in an hour, at the end of the day, or the next day. Then I have to repeat the story to the nurse and convince her or him that my need is urgent. Most times I have to lay out my whole story (CHF, diabetes, and whatever is currently wrong) in order to be seen. I have to explain it all twice and then I get to tell the doctor the whole story all over again. As gatekeepers, both the receptionist and the nurse can keep me from receiving care. This very system-centered process elongates the time between my calling and my being treated. One example: I have had CT scans with dye to see whether I had fluid on my lungs. Once the dye is injected, I can't take my diabetes medication for at least 48 hours and before I can take the medication again, I have to have a kidney function test. Because CHF puts a strain on my system and makes my diabetes harder to manage, I have to minimize the time I spend off medication, but I have to go through the receptionist and the nurse to have the kidney test ordered and again to receive the results. A delay on a Friday means I have to go through the weekend with uncontrolled sugars.

* There are so many social issues within health care. This may seem trivial, but it really is a health and morale issue? I was admitted to St. Joseph!=s Hospital twice last year; I stayed for four days each time. The first time, I was offered a dinner of beef stroganoff on arrival, had tests during the next two meals and then was brought beef tips. Lovely as these sound, I!=m a vegetarian. I know how hard the nursing staff works and it was extremely uncomfortable, in fact, it was excruciating for me to bother them by having to ask for different food. The second time I was in the hospital, I was again given beef. There is no system now that allows patients to express their dietary or other preferences and have it captured as part of their medical persona.

Solutions (patient-centered) These are just a couple examples of problems. Now I want to talk about how the grant will provide solutions to those problems.

I just told you about encountering problems with medical records, gatekeeping, and dietary preferences. With our new vision of patient-centered health care:

* Medication and allergy records are managed within one electronic record and are transparent to all providers. With the new system, I won't have to make all those phone calls and I will be so grateful. * Gatekeeping is minimized or eliminated by care manager advocacy. I'll talk more about that in a minute. * A patient's personal preferences, whether dietary, religious, involvement of family, social, morale, or medical are addressed within the Care Plan.

When I was sent home from the hospital in July, I was assigned a congestive heart failure care manager as part of a pilot project with Family Care Network and Group Health Cooperative. My CHF care manager called me every Thursday from mid-August until two weeks ago [January 2002] when I stabilized and graduated to every-other-week calls. Every week she has done a quick medical assessment by asking my weekly weights, whether I have any swelling, whether I have a cough, and other questions to determine whether I have CHF symptoms. Early in the process (within the first five weeks) I told her I was tired but I didn!=t report any other symptoms or concerns. She apparently heard something in my voice and called my cardiologist. From her report, he wanted to see me the next day, which was a Friday. When I went in, we found that I had a standing BP of 60/40 and was severely dehydrated. I NEVER would have called the cardiologist to complain that I was tired. My care manager, because she knows me, knows that I!=m not a whiner, knows my case, and knows me in a more intimate way than my doctor's receptionist or nurse, got me seen and no doubt prevented an ER visit that weekend. My CHF care manager eliminates gatekeeping and acts as my advocate. That is patient-centered.

In our community, many patients are sicker than I am and are less capable of managing their care. For them, for all of us, the changes we are proposing to the health care system are imperative.

Participation on the Core Team The first thing I want to say is how wonderfully the other patient representative and I were treated by the other members of the Core Team. My participation on the Core Team has been such a joy, I can hardly tell you. I am so grateful.

I told you about three problems that I've faced as a patient. As I participated on the Core Team, I tried to keep in mind the many challenges all patients face within the current medical system. I tried to think about the other patients in different chronic care situations. I tried to bring the voices of those other patients to the table.

* We were treated as equal partners on this committee: * We were on the Core Team and IHI e-mail lists and were included in all the committee and grant correspondence, so we were "in the loop." * We received the minutes of all the team meetings and the minutes of other committees as well. * We were invited to participate in all the conference calls for the grant. * Our input during and between meetings was welcomed and encouraged. * We were asked questions and asked to brainstorm on how patients would feel or react to different suggestions for the new vision we're proposing.

* I reviewed the Goals and Promises section of the grant for patient needs and patient-centric language. * I attended a CHF Focus Group and learned how patients with different conditions have different concerns and needs: A patient with CHF caused by coronary artery disease has problems and needs different from a patient with cardiomyopathy. A person who has been stable for ten years has concerns different from someone on the transplant list. * I attended and participated at Core Team meetings, as much as my health would allow, with patient needs in mind. For each issue we discussed, I tried to think about how the patients would be affected, who would be affected,  and asked myself (and the team), "What if?"

* What if the patient can't do x? Can we substitute caregiver here? * What if the patient doesn't have access to a computer? * What if the patient has multiple chronic diseases? * What if the patient is a three-year-old diabetic?

* I helped Mary Minniti write Clara's story as a positive, patient-centered vision for the future. Those of you who have read the grant know that Clara's story is a situation that reflects, in a small way, what good patient-centered, goal-based care would look like.

On behalf of all patients, I'd like to thank all of you for your efforts to put the patient at the center of healthcare.

Thank you.

Discussion