Profiles in Improvement: Martha Hayward, IHI Lead, Public and Patient Engagement

Hayward_Martha_SM.jpgMartha Hayward joined the Institute for Healthcare Improvement (IHI) in March 2011 as the Lead for Public and Patient Engagement. A cancer survivor herself, she is a founding board member of the nonprofit Women’s Health Exchange and served on the Patient and Family Advisory Council of Dana-Farber Cancer Institute in Boston. Her career experience includes over 20 years in marketing and fundraising in the areas of health, politics, and education. As a partner at Donovan & Vicenti, a branding and web design firm on Boston’s North Shore, Ms. Hayward works with a variety of small businesses and nonprofits. Most recently, as Executive Director at The Partnership for Healthcare Excellence, she brought a particular focus on, and considerable experience in, the area of patient advocacy. 

 

Q: What was your journey to IHI?

Well, it all began when I was sitting at MGH [Massachusetts General Hospital] in the chemotherapy infusion room with my sister, who’s two years older than I am. She had just turned 50 on December 14, 2005. On December 20, she was diagnosed with cancer. It was a total shock. We had never had cancer in our family.

I was my sister’s chemotherapy partner. At the time I was 48, and one day I was sitting with her and thought to myself: I haven’t had a mammogram in two years. And I remembered after the last one I’d had I had been concerned because I could feel a little bit of a lump. But my doctor had said, “Don’t worry about it. You’re much too young to be worrying about breast cancer.”

Well, I went for a mammogram and was diagnosed with breast cancer: three cancers in each breast. My sister had a lumpectomy with chemo and radiation; I had a double mastectomy with no reconstruction.

Throughout the whole process, my sister and I were on the phone every single day. I went to her appointments with her; she went to my appointments with me. (She was wearing a wig, so they always thought she was the cancer patient!) We laughed, we cried, we took on everything together. We shared small things and big things like treatment decisions. We went through genetic counseling together — breast cancer in two sisters is a big deal. (One of my younger sisters was diagnosed and treated for cancer as well.)

My sister and I are both healthy now. We realize that we’re lucky we had the best medical doctors, equipment, and technology available. But what kept us alive was being in it together. Through the whole complicated and emotional process, nobody in the medical community brought either of us beyond the clinical decisions: surgery, no surgery; chemo, radiation, reconstruction. No one told us what it was going to look like on the other side. You are a cancer patient for a limited period of time, but you live with the consequences forever. Nobody talked to us about survivorship — life after cancer.

 

So, I was really motivated to help other women. My greatest hope is that every woman diagnosed with breast cancer will be diagnosed early, but fear often stands in the way. I created something called “Remember Beads” to help address this. They’re four pink beads in different sizes on a pink ribbon necklace. Each bead represents the size of a tumor at different points: the first (smallest) one is what a mammogram would see; the next one is the size a doctor might feel in a clinical exam; the next is what you might feel if you do frequent breast self-exam. The fourth, and largest, one is what you might come across if you didn’t do frequent breast self-exams. They’re all early stages of cancer. The beads help start conversations. If you wear them around your neck, people will ask you about them. So as you explain the sizes, you’ll be teaching about breast cancer, sharing important information in a casual, non-threatening way. I still work on spreading the beads  they’re available through the Women’s Health Exchange.

 

I also took on another role during my journey, with Dana-Farber [Cancer Institute], where I was treated. I joined Dana-Farber’s Patient and Family Advisory Council. Members of the Advisory Council notice things, hear things, feel things, and then bring them to the monthly Council meetings. It was an amazing experience because people listened to us and made changes based on our input — sometimes within 24 hours — because the Council had strong leadership support.

I experienced this myself. When a friend of mine was also receiving chemo at Dana-Farber, I went with her to her appointments. One day as we went into the chemo bay, there was a small blood spatter on the curtain and my friend was really upset — everything felt dirty and dangerous to her from that moment on. I brought up the incident at the next Council meeting, and the group said, “Okay, we’re making a new rule: every curtain comes down and doesn’t go back unless perfectly clean.” It was implemented the next day. That’s when I realized how many individuals our work could help. Everything we did through the Council really impacted patients and their families.

I met [IHI Senior Fellow] Jim Conway and was introduced to IHI during this period. One of my questions for Jim was, “IHI is completely focused on patient-centered care, but there are no patients here! How come?” And he said, “Good question.” That was about three years ago. Jim has really championed this work, and as he was moving toward retirement and IHI was making a deeper commitment to patient engagement, they asked, “Who can help take us there?” My name came up.

Q: What will you do in your role at IHI?

My job is to embed patient-centeredness and patient-focused thinking into every level of IHI — from executive to IT to customer support, across all the portfolios [of work] — to provide the language, the understanding; to make it all real. What does “patient engagement” really mean? What does it look like, what does it feel like? What does it mean to IHI staff and faculty? Do we have to alter the way we work in any way?

And I’m going to be bringing patients directly into IHI: identifying patients who want to contribute, recruiting them, and preparing them to be effective. There are all kinds of patients, with different skills and interests. There are patients caring for elderly relatives, patients with multiple cancers, patients with children with chronic conditions. And they’re all different. Some may be activists and want to work on a government level, influencing policy. Some may want to be inside the hospital helping individual patients have a better care experience. Some couldn’t bear sitting in meetings, but may be brilliant speakers. So my job will be to get to know them, their personal goals and objectives, and what resources they can offer.

This year we’re going to have about 25 patients at the Forum [IHI’s National Forum on Quality Improvement in Health Care] sitting on panels, in presentations, standing on the dais — where they belong. I’m really excited IHI leadership has embraced this decision.

 

Patient engagement is a two-way process. It’s not going to work if we teach patients to be engaged in their health care and they go visit their doctor with a list of questions, and the doctor stops them with: “I’ll ask the questions.” That’s not a patient-centered environment.

Some resistance comes from a fear that patients are just too needy, that once you bring a patient into a room they’ll never stop talking. But there are very real ways a nurse or a doctor can engage with a patient in a meaningful way that still provides boundaries. And nobody in our medical system is teaching that.

And there are unexpected rewards to providers. Engaging patients in a process brings urgency and focus — also joy in work. I was part of an IHI program last year working with about 50 hospitals. Everything we did was systems focused, but the purpose of the program was about engaging patients; engaging staff with patients. By our third Learning Session, the feedback we got from teams was this incredible sense that people had regained their love for their work — because they had been taught or discovered ways to work with patients.

Another role I see for IHI is to reach out to the public. I have a very clear sense in my head that there are two kinds of people, and we’re all one or the other at any given time: a patient or a person (which I’m calling the public). When you’re a patient, you’re in crisis. This is not a learning state; it is an emergency state. But when you’re in a public frame of mind you’re teachable, you’re impressionable, and you have perspective. We need to touch that population and listen to what people anticipate when they go into the doctor’s office, the clinic, or hospital. If somebody comes in feeling scared, nervous, and angry, that’s the kind of patient we’re going to meet. But if we reorient, we can improve the chances that more people will have a very different experience interacting with the health system when they become patients.

Q: What impact do you think IHI can have as we expand this work?

Well, on a big scale, I truly believe that the key to transforming the health care system — everything about health care — is engaging the public and patients, and I see IHI as having a huge opportunity to take the lead in this movement. I see projects that could really put IHI out into the environment as a leading voice in how to engage patients in hospitals and office practices.

If you think about it, there are other revolutions in health care that were totally patient driven — like childbirth, fathers being allowed in maternity wards; women being able to have natural birth in hospitals. This was entirely a push by women in the 1960s to say, “We don’t want only medicated births in sterile hospital rooms. We want natural birth, and we want the medical system and insurance plans to accommodate this change!” And it happened; it was a revolution that transformed this major part of the health care system.

This trend isn’t going away. Patient and family advisory councils prevail all across the country, whether by state mandate or not. Patients have never wavered in their assumption that they should be at the center of their own health care. The system just hasn’t figured this out yet.

We had a participant in an IHI program whose teenage son died in the ICU after a tragic car accident. She and her husband were only allowed into the ICU for a few minutes — she was not with him when he died. She shared this story with the hospital teams attending the program. At the next session we asked if any hospitals represented in the room had stopped restricting visiting hours in the ICU, and about 15 people raised their hands.

That’s the kind of impact IHI can have.

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