Our Mission

To engender effective partnerships among people seeking health care, people providing health care, and people making health care policies through:

• Advocacy• Education• Research• Policy

Vital Directions: Advising the Incoming Administration on Health Policy

There are unprecedented challenges—and extraordinary opportunities—that the incoming administration must weigh to chart the next steps for health reform in the United States. Center director Meg Gaines was appointed to an 18-member steering committee convened by the National Academy of Medicine (NAM) to advise the next president. The committee assembled over 100 leading researchers, scientists, and policy makers to provide expert guidance on priority areas for U.S. health policy focused on better health and well-being, high-value health care, and strong science and technology.

As we work with patients, we notice recurring issues that warrant “upstream” advocacy to prevent the issue arising for future patients.

Over the course of the last 16 years, we have helped countless clients navigate the confusing and sometimes frightening process of appealing insurance coverage denials. Determined to improve the process for patients in Dane County and to design a model for “best practices”

to export nationwide, we embarked on a “Case2Cause” project bringing health insurers together to examine their practices and explore ways to improve them. This effort presents an extraordinary opportunity for students to see a “case” become a “cause” and to examine and influence larger policies and system issues.

Our first meeting with executives from five Dane County insurance companies took place this fall, and was a resounding success. The participants noted that they are rarely all together in the same room,

Case2Cause: Leading the Transformation of Insurance Appeals “to Infinity and Beyond!”

Why I Give:I have advocated for my son

and my late husband, and believe

in the power of advocacy. I am so

impressed by CPP’s teaching and

the services they provide. Ensuring

patients have support is very

important to me. That’s why I give

to CPP.” – Ann Boyer

“

called the Center this year (11/1/15 - 10/31/16)

Who’s Calling?

225 CLIENTS

A Year in Review 2016

Questions?For more information on the Center’s work, please visit our website at www.patientpartnerships.org or contact our Development Director, at (608) 890-0865.

Center for Patient Partnerships 975 Bascom Mall, Suite 4311 | Madison, WI 53706Advocacy Services: 608-890-0321 | Business Line: 608-265-6267www.patientpartnerships.org | info@patientpartnerships.org

Center Faculty and Staff

Thank you… Your investment allows us to make a difference in the lives of patients and families across the country. Together, we raise voices to create change in health care organizations and the system as a whole.

that they had never come together to discuss the appeals process, and that they particularly appreciated the opportunity to address the patient experience. The conversation was open and candid, and surfaced the challenges as experienced by patients and insurers.

In the next phase students will observe hearings and interview staff members to learn more about the process and their work. The next meeting will focus on

the results of our observations, followed by a robust conversation about ways to improve the process, informed by the extensive research students have already done on best practices nationally. The final product will include a customized report for each insurance company including recommendations crafted specifically for their teams.

In addition to improving our local appeals process, our goal for this project is to provide a transformative learning experience for our students. No doubt this has already happened.

Second year law students: Sloan Kessler, Claire Dennis, and Rachel Paulus, with Meg Gaines

On September 26, NAM hosted a public symposium, Vital Directions for Health & Health Care: A National Conversation, to discuss policy directions, identify outstanding questions, and explore opportunities. This symposium will inform the steering committee’s priorities for the incoming administration, policy makers, and the public.

STAFF: Back row: Jake Rome, J.D., Advocacy FacultyStephanie Johnson, MSSW, Advocacy Coordinator Christopher Yue, M.S., Student Services & Technology Coordinator Lane Hanson, MSW, Child Advocacy Project CoordinatorPeter Heal, Office Assistant

Front row: Cecie Culp, MPA, Research SpecialistKay Barrett, M.D., Medical Consultant Pete Daly, PE, Advocacy Faculty Kelly Douglas, Development Director Robin Conkey, Program Administrator

LEADERSHIP TEAM Rachel Grob, M.A., Ph.D., Director of National Initiatives/Clinical Associate Professor Jill Jacklitz, MSSW, Director of EducationMeg Gaines, J.D., LLM, Director/Clinical Professor Sarah Davis, J.D., MPA, Associate Director/Clinical Associate Professor

From researching treatment options and clinical trials to helping clients understand their insurance coverage, our student advocates partner with patients to navigate the often rough terrain of our health care system.

Why patients contact us:

It starts with a patient. Tamara, a single mom of three, brought her 4 year-old in to Wingra clinic for an exam. When she checked in she learned that the doctor was asking her to complete a new form. It asked if Tamara needed help with things like housing, getting healthy food or household items for her family, and employment.

With overwhelming evidence of the effects of social and economic factors like these on health, clinics around the U.S. have started screening patients for basic needs. And they are seeing impact, including improved health of sickle cell and asthma patients as well as decreased stress and improved well-being among participating families. Plus, it leads to improved satisfaction for healthcare staff and increased capacity to address root causes of the health issues vexing health care.

Locally, CPP convened a team of community collaborators to develop an effective and replicable model for a clinic-based program to both identify

and assist patients with unmet basic needs. In 2016, we partnered with Wingra Clinic, a primary care clinic in Madison, WI, to launch the Community Resource Navigator Program, combining the best of models like Health Leads and Medical-Legal Partnerships with CPP’s innovative educational approach and focus on genuine partnerships with patients. Thanks to a generous challenge grant from the David and Mary Anderson Family Foundation, CPP hopes to expand the program to two additional clinics by 2018.

Undergraduate students are trained as Community Resource Navigators and work directly with families to link them with key community resources. The Navigators provide regular follow-up with patients to help assess additional needs, address barriers, refine plans, and ensure families access resources they need to be healthy.

The Role of Resource Navigators in Health Care This Year Marked the Launch of Healthexperiencesusa.org!“If [my story] helps maybe one person, then that’s something I’ve always wanted to do. Helps them realize that they…aren’t alone…just as long as it helps one person realize that it will be ok.”

Devin is one of 38 young adults from across the country who shared their stories of living with depression for a new website designed to help people better understand the experiences diverse people have with health and health care.

We co-created the website, healthexperiencesusa.org, in collaboration with Johns Hopkins University, Oregon Health & Science University, and Yale University. The site is designed for a diverse audience, including patients and families, caregivers, health care professionals, educators and students in the health

professions, researchers, policy makers, and the general public. The methodology used to created site modules identifies themes in patient experiences and presents them in patients’ own words.

The first module — Young Adults’ Experiences of Depression in the U.S. — debuted this year. The website will expand to incorporate additional conditions over time, and topics currently under development include traumatic brain injury in veterans, pediatric cancer, HIV/AIDS, and patients’ experiences with clinical trials. Understanding patients’ experiences of how it feels to live with chronic and life threatening conditions, including what treatment options they prefer and how they manage daily life, is crucial.

Our Director of National Initiatives Rachel Grob spearheaded bringing

these methods, initially developed at Oxford University, to the United States. She shares that the site addresses the problem of tokenism.

We expect the Community Resource Navigator Program to contribute to improved health outcomes, increased health equity, and better patient experiences, while providing transformational educational experiences for students.

What did that mean for Tamara? When Tamara completed her screening form

From left, Community Resource Navigators Kritika Singh, Sam Brady, and Amy Soeun

she let her health care clinic know that she was struggling to pay her utility bills, purchase clothing and school supplies for her children, and find resources for her son with autism. We matched her with Ana, an undergraduate student aspiring to go on to medical school. Ana chose to volunteer as a Student Navigator to get some experience working directly with patients. She has gotten much more than that.

“It’s hard for us to find resources. I can’t imagine how hard it is

for patients.” - Community Resource Navigator

“This is teaching me to see the whole person, not just

the medical needs.” - Community Resource Navigator

After meeting with Tamara in the clinic, Ana promised to research options and follow up by phone. But when she tried to call, Tamara’s phone was disconnected. While many social service providers may have stopped there, she was able to keep trying. She was thrilled to reach Tamara…a month later! Through a continued partnership with Tamara, Ana has been able to get vouchers for school clothes, free school supplies, and connect her to a local agency that supports families who have children with disabilities.

Our Community Resource Navigator listens, builds trust, and continues to work in partnership with Tamara. They are currently working on her next goal to finish her GED so she can help her kids with their homework.

Community Resource Navigators Kara Chung, Johanna Balas, Jessie Miller, Allie Hung and Patrick O’Grady. Photo credit: John Maniaci CPP continues to be a thought-leader on the patient experience in health care, as demonstrated by our extensive publications.

“It’s an exciting methodology that moves us from the singular patient voice to

patients’ voices in the plural. Healthexperiencesusa.org

offers a powerful solution to getting a much broader range

of perspectives.”

For more information, please visit healthexperiencesusa.org.

A similar initiative in the United Kingdom (healthtalk.org) now hosts more than 85 modules and received almost two million visits from the U.S. last year. We know people are hungry for this kind of information, and healthexperiencesusa.org addresses illness and health through the lens of American culture and the U.S. health care system.