This interview with Kalahn Taylor-Clark is the eigth in a series of brief chats between CFAH president and founder, Jessie Gruman, and health care experts - among them our CFAH Board of Trustees - who have devoted their careers to helping people find good health care and make the most of it.
Engaging Patients and Families as Partners
Gruman: Your current position as Director of Health Policy at the National Partnership for Women and Families requires you to know about a lot of different topics related to people's engagement in their health care.' How has your background and history prepared you for this role?
Kalahn Taylor-Clark: Well, I have long been interested in how people participate in their health and health care, and by orientation, I am a structuralist, meaning that I am interested in how public and private policy can make it possible for most people in this country to take good care of themselves.
Gruman: So, for example, what skills and knowledge did your education offer?
Kalahn Taylor-Clark: I completed a PhD in Health Policy and continued as a Kellogg Health Scholar at Harvard University where I worked with Drs. Robert Blendon and Vish Viswanath in the areas of survey research, media framing, and public opinion. Apart from the qualitative and quantitative skills I gained, one of the most important lessons I learned there was how important it is to understand how people the public understand the health and health care problems they face, and how we might influence the ways in which people consider addressing these problems. This inquiry is particularly important when considering the health and health care problems of our most vulnerable populations, namely: the poor, older, and racial/ethnic minority groups in this country who face a disproportionate burden of unequal health care access, worse health care quality, and worse health outcomes. It is my belief that if we can create a system that works for these most vulnerable groups, we can create a system that works for all. That said, framing the issues of health inequalities is a delicate dance, and one that importantly requires an understanding of how people think about these problems, and who they think should be responsible for addressing them.
Gruman: Then you headed to Brookings.
Kalahn Taylor-Clark: Yes. As a Research Director, I led the Patient-Centeredness and Health Equity Portfolios in the Engelberg Center for Health Care Reform. These portfolios sought to: inform regional, state, and national practices for advancing priorities for patient-generated measurement in new delivery and payment reform models; incorporate consumer perspectives into strategic planning of new delivery reforms; focus on social determinants and population health in health care reform models; and identify innovative ways to collect and report data to measure and address health care disparities.' For the latter effort, we convened a multi-stakeholder group in Massachusetts to guide the Commonwealth in developing requirements for health plans to acquire race/ethnicity data from members. This was my first experience in affecting, from the beginning, the development and passage of a law that could potentially affect millions of peoples' lives.' Still, the law only affected health plans' reporting of race/ethnicity data, it did not extend to having to do anything about disparities once they acquired the data.' This experience taught me that we can make incremental changes to shape policy, but if we do not engage consumers, patients, and family members in health care processes, we will not be effective at eliminating inequalities and improving health for all.
Gruman: And so you moved to the National Partnership for Women and Families, which is a leading non-profit consumer organization that works on this issue, in addition to a number of others.
Kalahn Taylor-Clark: Yes The Partnership is doing a lot of work to ensure that health care consumers patients and family caregivers become active, effective members of health care governance structures, system redesign, and individual clinical interactions in communities. For example, we have worked at the Federal level to assist the Centers for Medicare and Medicaid Innovations (CMMI) programs to effectively engage consumers and promote patient-centeredness criteria advanced by the Accountable Care Act (ACA).' Further, we have worked with state and regional communities to advance effective consumer engagement in the (re)design of delivery systems, seeking to enhance partnerships between providers/clinicians and patients/family caregivers, in order to advance patient centered care.
I see real transformation taking place, however, only when three levels of consumer engagement are advanced to support patients and family caregivers as collaborative partners in the continuum of their own care and health.
At the clinical level, collaborative engagement is driven by a shift in the mindset of clinicians, who must view their patients and family caregivers as partners in the care that is delivered.' That is, as partners, clinicians and patients/family caregivers must feel that we each have a stake in the outcome; we each have agency, i.e., there are things we can do; and we each have a responsibility to act on that agency.
The second level is within individual systems, whether a hospital and its affiliated practices or a larger group, like an Accountable Care Organization. There, it's not only including patients and families (and other community stakeholders) in partnerships at the clinical level, but in system (re)design and governance.' That is, creating a system with consumers that is meant to be effective for consumers.
The third level is consumer engagement in state and Federal legislation and regulations (whether health care or broader social policy) that in the end, make it possible for people to effectively care for themselves and their loved ones.' For example: The Affordable Care Act (ACA) provides a significant opportunity to improve access to health insurance and services for millions of Americans.' In the current economic climate we are increasingly conscious of the need to promote the effective and efficient use of health care services, reduce health care costs and improve preventive health. We believe that providing workers with access to paid leave policies, including job-protected paid sick days and family medical leave that workers can use to recover from routine illnesses and seek preventive care and to address serious health conditions of a family member, will be critical to advancing these important objectives.