"Nothing About Us Without Us"

October 27, 2014 — Blog Post

Nothing About Us Without Us

While health disparities continue to undermine the ability of many groups and communities to thrive and connect with socio-economic opportunities, patients from underserved and vulnerable populations remain largely underrepresented when decisions are made or policies are developed about health and related issues. Yet several experiences both in the U.S. and globally (Brownstein et al, 2005: Thiam et al, 2007) demonstrate the effectiveness of community and patient engagement strategies in supporting behavioral adoption and maintenance within clinical settings.

Too often, some of the main impediments to successful patient outcomes include “poor communication among health care personnel and patients,” “unique health beliefs and practices,” “distrust of the medical system,” and/or “lack of cross-cultural communication skills, time and resources for providers to manage long-term interventions as it applies to different health areas and settings” (Thiam et al, 2007; Martin et. al, 2005, Brownstein et al, 2005).

So, how can we make sure that the needs and preferences of patients and communities from health disparities settings are included in our thinking and interventions as well as adequately address health literacy levels and existing barriers to improved health outcomes and disease prevention? How do we create meaningful connections between clinical settings and underserved communities? The answer lies in participatory planning. By inviting everyone to the table (including patients, clinicians, community-based organizations, government agencies, hospitals, local universities and business, and many others) we are more likely to develop patient- and community-specific strategies.

Under participatory planning models, clinicians may learn from patients and communities about cultural characteristics, priorities, and needs that would enhance their ability to empathize and become effective communicators. They may also learn how to connect patients with community resources, so that they are able to effectively address barriers to disease prevention and treatment adherence. For example, how can we expect people who live in a food desert and may work three different jobs to support themselves and their families to look for and cook healthy food on a regular basis if we don’t remove key obstacles to recommended behaviors? Yet the solution to many of these issues is not only dependent on adequate policies (federal, local, or institutional) but sometimes already exist with the community itself, because of the ingenuity of some of its members.

At the same time, community leaders and organizations may learn from clinicians about health and social issues that are prevalent within a given patient population or community. They may be able to reinforce clinical recommendations in informal settings, advocate for change, and help remove barriers to behavioral and social results. This goes beyond the training of community health workers for task-shifting purposes. This is in fact a multilevel, integrated approach to patient and community engagement that also capitalizes on the unique attributes and cultural awareness of different community organizations and members to improve provider effectiveness in communicating with their patients and helping them achieve their health goals.

Now participatory planning is not just about participatory research. It’s about effectively listening to the patient and their communities and engaging them in the design, implementation, and evaluation of all interventions. It’s about releasing some power and recognizing the expert in everyone. It’s at the core of several communication and strategic planning models that have brought new energy to the work we have all been doing in healthcare and global health. It’s about moving away from templates and being open to a social process that is likely to change everyone in the making.

“Nothing about Us Without Us” – these expertly crafted words were first introduced in Central Europe to convey the importance of people’s participation, and they are also analog to some of the slogans of the American War Revolution (Davies, 1984). More recently, they came into use in disability settings during the 1990s, and continue to be associated with interventions and forward thinking that is inclusive of other underserved and vulnerable populations. We now have an opportunity to incorporate the process they evoke in our planning and interventions for patient and community engagement.

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Author
  • Renata Schiavo, PhD
  • Renata Schiavo, PhD

Renata Schiavo, PhD, MA is Founding President, Health Equity Initiative, a non-profit membership organization dedicated to building a global community that engages across sectors to advance health equity. She is also a Senior Lecturer at Columbia University Mailman School of Public Health and Editor-in-Chief, Journal of Communication in Healthcare: Strategies, Media, and Engagement in Global Health. Her participatory planning and patient/community engagement work (both in the U.S. and international settings) has focused on many health and social areas, including infant mortality prevention, cancer, and malaria. She is the author of Health Communication: From Theory to Practice (San Francisco: Jossey-Bass), now in its second edition, and dozens of other publications. Follow Renata on Twitter @RenataSNYC

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Author
  • Renata Schiavo, PhD
  • Renata Schiavo, PhD

Renata Schiavo, PhD, MA is Founding President, Health Equity Initiative, a non-profit membership organization dedicated to building a global community that engages across sectors to advance health equity. She is also a Senior Lecturer at Columbia University Mailman School of Public Health and Editor-in-Chief, Journal of Communication in Healthcare: Strategies, Media, and Engagement in Global Health. Her participatory planning and patient/community engagement work (both in the U.S. and international settings) has focused on many health and social areas, including infant mortality prevention, cancer, and malaria. She is the author of Health Communication: From Theory to Practice (San Francisco: Jossey-Bass), now in its second edition, and dozens of other publications. Follow Renata on Twitter @RenataSNYC