Allergy and Asthma Research Projects and Partnership

PCORI Engagement Award Project – Virtual Conference Series for African-American Asthma Patients: Getting Involved with PCOR/CER

2020 – 2021

Allergy & Asthma Network’s Not One More Life program team engages stakeholders in a virtual conference series to disseminate Patient-Centered Outcomes Research (PCOR) findings and better understand the needs and gaps to engage African American asthma patients in research. Not One More Life involves faith-based and healthcare community leaders who host health screenings and educational programs to help African American asthma patients better manage their asthma. This conference series is designed to: 1) inform emerging research needs as it relates to African American patients with asthma; 2) discuss future plans to expand Not One More Life beyond asthma to include COVID-19; and 3) develop programs to educate African American patients with asthma to become participants in all aspects of patient-centered outcomes research.

 

PREPARE PCORI Project – Person Empowered Asthma Relief

2017 to present

Now in its third year, Allergy & Asthma Network’s research team continues efforts in recruiting 1,200 African-American and Hispanic/Latino adults, ages 18 to 75, who have asthma, use an ICS inhaler, and have had an asthma attack within the past year. As Patient Advocacy Stakeholders, we ensure that the patient voice is heard and incorporated into all aspects of the PREPARE study including study design, study implementation, analysis, interpretation and development of understandable messages for dissemination. Allergy & Asthma Network is advising the research team in study design, materials, recruitment and retention strategies. 

 

 

Increasing Diversity in Clinical Research
2019

In collaboration with Antidote Technologies

Survey of 4,000 patients and caregivers about their attitudes towards clinical research.

The survey revealed several factors that affect the participation of people of color, including trial type preferences, motivations for and barriers to taking part in a clinical trial, and logistical factors. 

 

Patient Activation Measurement Study (PAM)
2018-2019

In this study, Allergy & Asthma Network partnered with HealthUnlocked to evaluate the impact of online peer support offered by the ‘Living with Asthma’ community on its newly registered members using validated outcomes measures and by analyzing self-reported information from users before and after joining the community relating to their attitude towards managing their condition. 

 

HealthUnlocked – Living with Asthma Community
2017-present

This online community provides a space for people to share advice, receive support and meet others who truly understand what you’re going through.Our team members are administrators for this community and can pose questions to gain global insight from patients on specific health related issues.

 

coreAsthma – Core Outcomes in Moderate to Severe Asthma
2018-2020  

The goal for this project is to reach agreement on a “core set” of study outcomes to be used in clinical trials of therapies for moderate to severe asthma. The project brings together patients, caregivers, patient advocates, health care providers, payers, and other stakeholders.  In 2019, the Allergy & Asthma Research Team Served as coreAsthma Advisory Board Members and will continue to collaborate until the project is complete in 2020. 

 

Antidote/AAN Survey – Patient Perspective on Clinical Research
2018

This report is meant to shed more light into the reasons behind the low participation by reporting on the motivators of some of the people we would expect to know the most about clinical research – patients with asthma, allergies or other conditions. The information they provided about why they joined a clinical trial or about what would motivate them to participate in the future provides valuable insight that can enable deeper engagement with patients and physicians in more significant ways. 

 

This study also reaffirms the influence physicians and other health care practitioners have. The importance of their roles cannot be overstated: Patients want to hear about clinical trials primarily from medical professionals. Furthermore, talking with the doctors or clinical researchers involved in a trial would make these patients feel more like a partner in the research. 

 

Everyday Heroes Awareness Campaign

Everyday heroes are everywhere. They give their voice, their time and their effort for the causes they love – to make a difference and impact in the lives of people with asthma, allergies and related conditions. 

This campaign recognizes individuals who have participated in clinical trials. 

 

Patient Reported Outcomes Consortium
2017

Despite a number of safe and effective therapies to treat asthma available, a high proportion of patients remain symptomatic and at risk for exacerbations. No standard PRO measure currently exists for asthma that is fit for measuring important patient-experienced aspects of the disease. Such a measure could be used in addition to measures like spirometry assessment of lung function in the development of drugs for the treatment of persistent asthma. The Network partnered with the Asthma Working Group to develop the Asthma Daily Symptom Diary (ADSD) that will help capture the core symptoms of asthma in adolescents and adults for assessment and treatment benefit.

 

What Patients Want
2017

The Network conducted a survey of more than 1,000 asthma patients and published the findings in Pediatric Respiratory Review in November 2017. The article, “What Do Patients Want From Their Asthma Doctor,” was written by Bruce K. Rubin, MD and Tonya Winders. Most of those who responded wanted convenient access to their doctor, more time spent in office visits with greater attention paid to the patient, help in navigating insurance and prescription costs and paperwork, and a partnership in developing care plans.

 

OPEN Asthma Survey
2016

The Observations of Patient Experience in the Nation (OPEN) Asthma Survey was commissioned by the Allergy & Asthma Network and sponsored by Boehringer Ingelheim Pharmaceuticals, Inc. to explore current attitudes of healthcare providers and patients about asthma control with the goal of identifying areas for improvement. The survey included people living with asthma who were treated with daily prescription medicine, as well as healthcare providers who treat patients with asthma.

graphic from open asthma survey  reporting patients have limits on physical activity
graphic from open asthma survey  reporting patients have limits on physical activity

Open Asthma logo The Observations of Patient Experience in the Nation (OPEN) Asthma Survey was commissioned by the Allergy & Asthma Network and sponsored by Boehringer Ingelheim Pharmaceuticals, Inc. to explore current attitudes of healthcare providers and patients about asthma control with the goal of identifying areas for improvement. The survey included people living with asthma who were treated with daily prescription medicine, as well as healthcare providers who treat patients with asthma.

Survey Findings

The majority of patients report their symptoms are well-controlled and their lives are not strongly affected by their asthma. Yet:

  • On average, they report experiencing symptoms such as coughing, shortness of breath and daytime fatigue on a weekly basis
  • 70 percent report regularly experiencing some limits to performing everyday activities such as walking, getting enough sleep and household chores

Patients don’t report asthma significantly affects their life, but asking very specific questions about experiencing limits to activities can elucidate the challenges patients are facing

In contrast, according to surveyed healthcare providers:

  • Well-controlled patients should only be experiencing symptoms about once a month
  • 84 percent report well-controlled patients should experience no limits to everyday activities

Probing on specific symptoms a patient is experiencing and objective classification tools can help assess true severity and level of control

The findings also reveal a communication gap between healthcare providers and patients regarding the conversation topics during routine office visits:

  • Fewer than half of patients surveyed say they discuss symptoms with less than one-third saying they discuss how asthma affects daily life, and even fewer discuss an asthma action plan
  • However, the majority of healthcare providers report regularly discussing these same topics with their patients

The results reinforce the need to focus patient and healthcare provider dialogue on symptoms, limits to activities and asthma action plans in order to help patients achieve better asthma control

The patient and healthcare provider survey arms were conducted separately and there were no known relationships between the patients and healthcare providers surveyed.

Boehringer Ingelheim logo

Other Clinical Research and Market Research Projects and Partnerships in 2018-2019

 

  • Organized patient focus groups for clinical protocol design
  • Assisted in recruitment for IRB-approved clinical trials
  • Conducted market research for new product design
  • Conducted market research to trend beliefs, behaviors and trends in asthma and allergy care
  • Aided in patient focus groups for protocol design 
  • Aided in recruitment for IRB-approved clinical trials 
  • Conducted market research to support the research and development process 
  • Conducted market research to trend beliefs, behaviors and trends in asthma and allergy care 
  • Provided input into patient-reported outcomes and quality of life instruments to be used 
  • Reviewed patient-related materials (informed consent forms, educational materials) 
  • Assisted with recruitment and retention 
  • Evaluated data and advise on relevancy 
  • Assisted in development of patient communication at conclusion of trial