Patient and Public Involved Research: Not Just Clinical Trials

Whether due to exclusion criteria or living in a smaller city, I have never managed to find a clinical trial for asthma I have ever been able to participate in. While my severe asthma is well-controlled and fairly stable now, it took a long time to get there. When my asthma was uncontrolled, I was looking with much more earnest at clinical trial opportunities (as much in part for the possible treatment options as just getting more knowledge about my specific asthma.)

While it was not necessarily what I envisioned when I initially began wanting to be engaged, I've been fortunate to find other ways to be involved in asthma and primary care research over the years.

Clinical trials for asthma

To get clinical trials participation out of the way here, I have 2 major recommendations that do not require a ton of legwork:

• ClinicalTrials.gov is maintained by the National Institutes of Health (NIH) National Library of Medicine (NLM) in the United States but captures studies worldwide. I have found it the easiest one-stop-shop for clinical trials and studies that is easily filterable. (Though if you are open to more than one city it's a bit more of a challenge!)
• Check with your local medical school, university, or research/teaching hospital for information about clinical trials, or asthma studies, they may be seeking research participants for.

There are plenty of other ways to find studies, and always be mindful of anything that seems suspicious or is part of a study not linked with a major university, medical center, or other known research site--it's always best to practice due diligence and ask questions!

Keep in mind that both of the above methods to find research projects may also work for non-clinical trial research projects seeking participants, too!

Finding research opportunities for asthma and beyond

The past research projects I have worked on, or been a participant in, have been really diverse. Some have been through large patient organizations, others in an advisory role with pharmaceutical companies or tech startups, others with university research teams, and even simply through surveys done via apps.

Research study teams

Some projects will have study teams looking for patient partners at various phases of their research--more often research teams may need to include patients in their research as a requirement of their funding, however, I'm finding many teams want patient/public input throughout because it truly makes their projects better.

One study I participated in on virtual primary care, with the Manitoba Primary Care Research Network, involved patients from the time the study protocol was being developed, kept us updated during ethics review procedures and brought us back to develop surveys. When the focus groups were finished, the research team taught me how to "code" themes in the transcripts for qualitative data analysis, and then had a few of us involved in writing the final paper. Given I'd never taken a stats class or quantitative orqualitative research methods class in my life, it was really interesting to be brought in this way!

While I stayed on the team through publication, other patient partners joined for the initial stages and came back to provide comments on the draft manuscript or help present the research.

In the past, I have also worked with the University of Alberta's undergraduate students on their first research projects about asthma, both to review manuscripts and to have casual chats with them to help answer their questions about patient involvement in health sciences and asthma research.

These types of opportunities can be found through local research groups on various topics, usually through universities.

Public feedback/focus group sessions

I've never found these sorts of public feedback or focus group sessions by looking for them, but in my travels I've found these sorts of opportunities both online and in-person. University research teams, pharmaceutical companies, technology developers, and asthma patient groups/nonprofit organizations may be seeking patient partners for these types of topic-focused sessions...but you have to know where to look for them in your city or country!

Patient-public partner networks

Many universities/medical schools and departments will have different research networks; health regions/authorities or hospitals may also have their own patient engagement and feedback groups. I work as the Patient Network Lead with the Manitoba Primary Care Research Network based out of the Department of Family Medicine at the University of Manitoba part-time, helping to link patients with research opportunities related to primary care through eNewsletters and regular virtual meetings.

I'm also a participant in the Centre for Healthcare Innovation's Collaborative Network, providing feedback through regular calls about public/patient/caregiver involvement in research, based just down the hall from the other network!

In Canada, you can look up your local SPOR SUPPORT Unit--because everything is an acronym in research, this stands for Strategy for Patient Oriented Research (SPOR) Support for People and Patient-Oriented Research and Trials (SUPPORT).

In the US, you can start with PCORI, the Patient-Centered Outcomes Research Institute.

Elsewhere, I'd recommend searching [your country]+"patient-centered research" or "patient-oriented research."

If you aren't finding anything, reach out to someone who appears like they might be doing this work. I have found in my research network work that people are always thrilled to help make a connection that will help someone else, and in this case, you are usually the one doing the favor for a researcher!

Online surveys

I have learned from friends in the US that insurance companies will often have rewards for doing surveys online about health topics. While not asthma focused, my old Canadian insurance company had something like this, too.

Specific apps may also provide these opportunities. In Canada, BlueCharm is a survey-focused application I've used that both gathers data and provides some asthma education to users, and pays out actual money. Unfortunately, I do not have recommendations for other apps elsewhere in the world because I can't test them personally!

Remember: no legitimate study or "research job" will ever require you to pay up front to participate.

Compensation for participating in asthma research

All projects compensate patient partners for their time differently: don't be afraid to ask! In Canada, a standard for patient partner work is at least $25/hour--though, many opportunities are compensated more, and some entirely legitimate projects are unable to pay this amount...or at all. It's always up to you if you determine a project--paid or unpaid!--is worth your time, effort, and energy.

How have you participated in asthma research?

From asthma clinical trials to focus groups, manuscript writing and editing, to just giving a bit of patient perspective or advice, I have mentioned quite a few ways patients might be able to get involved in research...and I didn't even get into the technology side of things.

Have you participated in asthma research or other patient-oriented health research studies? How did you participate? Share in the comments--our involvement now is the way life gets better for everyone!