The PRAXIS Nexus The PRAXIS Nexus

A PPRN Primer for Providers

Posted on April 08, 2016   |   

We recently sat down with Cara Pasquale, MPH, Senior Director for the COPD Patient-Powered Research Network, to learn more about the initiative and how health care providers can support this work. 

Cara, thank you for joining us today to let us know more about the research program you’re leading. We hear a lot about the COPD PPRN. What is the COPD PPRN?

The COPD Patient-Powered Research Network – or COPD PPRN – is a research registry for COPD patients as well as people who are at risk for COPD. It is unique in that it is overseen by a patient-led governing board and is slated to be the largest research registry for COPD. Ultimately, the goal is to improve treatments for people with COPD and to find cures.

Why is it important that COPD healthcare providers know about this effort?

It is important for several reasons. First, it is a way to help empower their patients by inviting them to take an active role in their disease through contributing information that can further COPD research. Every bit of data helps. Connecting patients with the COPD PPRN also connects them to COPD Foundation resources. On their personalized, secure study dashboard, COPD PPRN participants can see the Foundation’s latest videos and educational materials. In addition, after participants complete their surveys, they are able to see how their answers compare to the aggregate responses of all participants (e.g., demographics, comorbidities).

We understand that the eligibility criteria expanded not too long ago. What are the basic requirements for participation?

Yes, originally we enrolled only COPD patients. After bringing together a team of subject matter experts, they decided that to make this a true community resource, we needed to collect data on at-risk individuals, as well. We expect that collecting this information over time will provide us a fuller picture of COPD and its progression.

Anyone over the age of 18 who responds "yes" to at least one of the following is eligible:

  1. Have been told by a doctor that they have COPD.
  2. Have a family history of respiratory disease.
  3. Are a current or former smoker.
  4. Are symptomatic of respiratory disease (for example, including but not limited to coughing, shortness of breath or wheezing).
  5. Have had a possible or known environmental/occupational exposure that may put you at risk for a respiratory disease (environmental/occupational exposure includes but is not limited to second hand smoke, indoor and/or outdoor air pollution).

For now, participants must be U.S. citizens. In the future, we plan to expand the network to international registrants.

What types of questions are you asking as part of the COPD PPRN?

We ask questions about respiratory health, comorbidities and oxygen use as well as quality of life questions addressing anxiety, depression, fatigue and the participant’s ability to engage in social activities. The informed consent and all survey measures were reviewed and approved by our patient-led governing board to ensure that participation was as easy and meaningful as possible.

Do participants need to come to your offices to complete their surveys?

No, it can be completed online at www.COPDPPRN.org; the first survey only takes 15-20 minutes and respondents do not have to complete it in one sitting. They can save their work and come back!

What is the future of the COPD PPRN?

Our vision is ultimately to:

  • Conduct more frequent data collection geared toward patient quality of life measures. This is useful not only for research purposes; participants can then bring these data back to their physicians. One of our longer-term goals is to have personalized reports for patients.
  • Take the leg work out of searching for COPD-related clinical trials. We would like to list other legitimate clinical trials that might be of interest to our community.
  • Register more than 100,000 people in the COPD PPRN! With current estimates at 15 million people already diagnosed with COPD in the U.S. and as many as 15 million not yet diagnosed, we know this is possible. Reaching this many individuals would give us a rich data set that would allow researchers to ask and answer questions to date not examined.

Is there anything for providers to pass out to their patients about the COPD PPRN?

Yes! We have posters, tear-off pads and post cards that are free to providers. We can ship these to you today. Just email us at COPDPPRN@copdfoundation.org and we will get those out to you. You can always contact the COPD PPRN team there with any questions.

Thanks again, Cara – we look forward to seeing what the future holds!

6 Comments



You need to login to comment.
  • Great interview, Kristen and Cara.
    Reply
  • A very important initiative for the future of COPD research. Congratulations on the progress, Cara, and on your informative report, Kristen.

    Reply
    • Thanks for conducting the interview Kristen! It is critical to get the word out about the COPD PPRN to providers so they can learn about this resource and how it can empower and help their patients.
      Reply
  • Great piece, thank you.
    Patients are moving to the driver seat in healthcare now and tools like the PPRN are critical to both engage and active them in not only their immediate care, but for the future- developing a cure for COPD.
    Patients reporting their data (patient reported outcomes) - and being involved in what research they want is the foundation of self- managing their care and shared decision making.
    Imagine if we all just got one individual to change, the outcomes could be monumental! The challenge is on.
    Reply
  • Well said, Deb! It's so important - and a great way to make a positive change that will go on to make a difference long after we're gone.

    Thank you, Cara, our fearless leader!


    Reply