Research

Patient and Family Engagement

The Role of Patients and Families

The role of patients, families and caregivers is changing. Commonly used terms include: patient engagement, patient-centered care, shared decision making and patient empowerment. Definitions vary. In general, they refer to an increased role of people, families and caregivers in health, wellness, treatment and care.

  • Patient-centered care is defined as "providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions." (Crossing the quality chasm: A new health system for the 21st century. Washington, DC: National Academy Press; 2001.)
     
  • Patient-Centered Outcomes Research (PCOR) is research that addresses the questions and concerns most relevant to patients. Patients, caregivers, clinicians and other healthcare stakeholders are involved along with researchers throughout the process. (www.pcori.org/about-us)
     
  • Shared decision making (SDM) is a process between providers and a patient with a medical condition for which there is more than one clinically appropriate treatment option. The goal is to help the patient make a treatment decision that matches their preferences and values. (Shared Decision Making: Advancing Patient-Centered Care through State and Federal Implementation. National Academy for State Health Policy http://www.nashp.org/sites/default/files/shared.decision.making.report.pdf Download PDF
     

Asthma and Allergy Foundation of America (AAFA) Patient and Family Advisory Councils

AAFA believes that the meaningful involvement of patients, caregivers and families is critical to our mission and work. AAFA is excited tell you that we have created a Patient and Family Advisory Council. We will also have subgroups of the Council that will focus on specific projects, such as this Food Allergy Patient & Family Registry ("Registry"). Please consider applying to join one of these groups. As an advisor you will be able to give your point of view on various activities and topics, such as:
 

  • Identifying issues of interest and concern about food allergies and anaphylaxis
     
  • Helping AAFA plan, design, conduct and evaluate projects, products and services about food allergies and anaphylaxis
     
  • Giving feedback on proposals for food allergy and anaphylaxis research and programs
     
  • Providing patient or caregiver perspective for projects that call for patient or caregiver involvement
     
  • Inviting your friends, families and colleagues who are living with food allergies to be a part of the AAFA community and to join our Registry

We want to include individuals that represent the diverse food allergy community:

  • People living with food allergies
     
  • Patients, parents and caregivers
     
  • People from across the age, geographic, socioeconomic and racial/ethnic spectrums

Add your voice to AAFA’s patient-centered activities and projects! If you are passionate about AAFA’s mission and ready to get involved, contact us at FoodAllergyPatientRegistry@aafa.org.

Selected Resources

Bloomrosen M, Sennett C Patient engagement: challenges and opportunities for physicians Ann Allergy Asthma Immunol. 2015 Dec;115(6):459-62. doi: 10.1016/j.anai.2015.09.005. Epub 2015 Oct 6. Patient engagement: challenges and opportunities for physicians

A New Definition of Patient Engagement: What is Engagement and Why is it Important Download PDF? Center for Advancing Health http://www.cfah.org/pdfs/CFAH_Engagement_Behavior_Framework_current.pdf Download PDF

Health Affairs Health Policy Brief. February 14, 2013 Patient Engagement http://www.healthaffairs.org/healthpolicybriefs/brief.php?brief_id=86.

Patient and Family Engagement: What It Is, And What It Means for Patients, Families, and Caregivers. http://cqrcengage.com/aafa/engagement

Food and Drug Administration (FDA)

Society for Participatory Medicine. The Society for Participatory Medicine is a 501(c)(3) not-for-profit organization devoted to promoting the concept of participatory medicine, a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners. http://participatorymedicine.org/