This webinar was recorded on Thursday, June 9, 2022
To move asthma and allergy science forward, we need patient partners who have experienced asthma and allergies or related diseases to participate in studies from the development of the question to the implementation of the results and anywhere in between. Patient partners are valued collaborators in studies and this presentation will share information about where to start and what to expect.
Speaker:
- Dr. DeDe Gardner, DrPH, RRT, RRT-NPS, FCCP, FAARC
Resource:
Transcript: This transcript is automatically generated. While this transcript is believed to be accurate, errors sometimes occur. It remains your responsibility to evaluate the accuracy and completeness of the information in this transcript. This transcript is not intended to substitute for professional medical advice.
00:04
We’re so pleased that you’ve joined us for today’s webinar titled Moving Asthma and Allergy Science Forward. My name is Sally Schoessler and I’m director of Education for Allergy & Asthma Network.. It’s important to look at the ways that we can advance the science surrounding allergies and asthma as we constantly look at ways to improve the lives of people in this important community. Allergy & Asthma Network is a grassroots organization that was begun over 35 years ago by a mom who knew that other mothers like her needed resources and support. Our mission is to end the needless death and suffering due to allergies, asthma and related conditions through outreach, education, advocacy and research.
00:49
In that 35 years, we’ve grown into a vital nonprofit that deals with many issues related to asthma and allergies. Including HealthEquity issues and all issues of concerns for the patients and we always want the patient voice to be heard. Today, it’s my pleasure to introduce to you our speaker, Doctor DeDe Gardner, who serves as Director of Research and Evaluation for Allergy & Asthma Network. Doctor Gardner is responsible for all aspects of the research mission area and focuses on ensuring that the patient voice is incorporated in all aspects of research.
01:29
DeDe is a respiratory therapist, a higher education professional and a public health professional. She is recognized for her leadership and contributions to the respiratory field with numerous awards and over 40 peer reviewed publications and presentations. Before joining Allergy & Asthma Network, she served on the faculty and in leadership roles at 2 universities. She continues to serve on a variety of local leadership roles in the respiratory care field. She also continues her roles as adjunct faculty at 2 universities.
02:02
Dede holds degrees in respiratory therapy, Health and Human services and a doctorate in public health. She lives in San Antonio, Texas with her husband, a high school football coach and history teacher. DeDe has a daughter with lifelong eczema and a son with severe pollen allergies, so we all know that this work is close to her heart. DeDe enjoys reading, puzzles, and gardening in her spare time. But with the look of this, I don’t think you have any spare time, DeDe. We thank you so much for being with us today and for sharing your unique perspective to this important topic.
02:37
So at this time, it’s my pleasure to introduce to you my colleague and friend, DeDe Gardner. And we’re going to talk to DeDe in just a second, but we’d like to do a poll question first. We’d like to know who’s with us today. So I would like to have you take a look at this poll. We’d love to have more answers than we can put here where they don’t give us that many options for answers.
03:03
So if you could select something that fits you the most, if you could. Are you a patient with asthma, allergy or a related condition? Are you a practitioner, are you a caregiver, a person with asthma, allergy or related condition or does none of the above fits you best so yeah just take a few minutes. Yeah I wish I could ask everybody who is putting in none of the above exactly who you are but we’ll have to just unfortunately we didn’t have the two way responses at times with these.
03:39
So I’m going to give it just another minute. Because we’ve got a few more people putting in their responses. Ok. And here are the results. We have 20% of our audience today, who are patients, we have 43% that are practitioners, 11% are caregivers and then we have 25% who didn’t fit into those categories. So we’ll but we’ll be interested at some point to find out who you are. So at this time I’m going to move us ahead and it’s time for GD. Thank you. Thank you very much, Sally. As we look at the objectives today, we want to make sure that we are understanding what the types of patient caregiver research exists here in the Allergy & Asthma Network.
04:27
We’re going to also describe some reasons for you to get involved from the patient perspective and also from the practitioner perspective and then talk about, you know, why it’s important that we all be involved in research. I personally have been a patient in a research project and I’ve also been on the scientific side. So we would like to know before we get going, have you participated in research? So we’re going to pull up that question and we have just a nice quick yes or no, have you ever participated in research? So I know that I recently, not in the allergy and asthma, but I recently participated in a clinical study and I have to tell you it was one of the most fascinating things I’ve ever done.
05:14
I really enjoyed that. So we are waiting just another minute here while you all put your responses in and. Let’s look at the results. So 56% of you have participated in research and 44% have not. So that’s very interesting. So that will be, I’m sure there will be, I think, topics in this webinar that will appeal to any of you. Great. So just talk about why we should be involved in research.
05:45
I kind of need to go back a little bit and think about the previous type of research. So previously patients really were only invited to be a part of clinical research. As Sally was sharing with you also, I, myself, have only been a clinical subject from a patient perspective where something or an intervention is being done to the patient versus having the patient serve as a team member where the patient can participate and provide. Insight that’s different.
06:12
Researchers in the past may have restricted the amount of input from a patient, more so looking at it as a necessary opportunity where the patient was included as the subject and again not that team member. So when we include patients, what we find is that the involvement of them gives us the opportunity to learn from the patient. Researchers many times will have a research idea of what they want to pursue. But I can tell you when you meet with the patient and visit with the patient, learn from the patient’s perspective, your question sometimes will be twisted to include the patient’s questions that they need answered in order to make healthcare decisions.
06:55
So being involved ideally as Sally had shared that she enjoyed the experience myself, I have been a patient as well with the circumstance that it occurred a few years ago where I actually had a breast cancer scare and I participated in. A clinical study and it was, it was an interesting perspective, especially being a researcher. But first and foremost, without patient participation like Sally, myself or any of you who have participated in research, we will never learn new knowledge to benefit the future. Patients who have a condition such as allergies or asthma or related conditions that we will not be able to learn.
07:38
So the general public usually sees research as a negative. And because of what they’ve seen in the media or what they’ve heard from a friend or a neighbor or even from the previous aspects that have occurred such as the Tuskegee events, it makes people suspicious of even participation, especially those patients that are from underrepresented minority groups or communities. Research usually involves patients as that study subject where something is being done to the patient and so forth, so improving the study.
08:13
Design is extremely important to me from a research perspective because patients can actually identify questions that would be important to their community. For example, a patient who is a black patient from a black community who is unable to get to a study. It would be difficult for someone to participate or a person who lives in a rural area would not be able to get to a study, so improving that design. Includes the questions and identifying relevant outcomes. Again, having a conversation with patients and including them as a patient expert, we can learn from that patient what outcomes are important to them and what outcomes we should be looking at from the researcher point of view.
09:00
Patients who can share their stories as to what it’s like to have experiential knowledge or living with a condition, allergies, asthma or other related conditions make the researcher. Think in a different way on what it is that we should be looking at. Also improving the fact that the outcomes of these research projects where you’re including patients, you’re able to have these outcomes be applicable or implementable or even adopted by the communities of interest. We have seen in the past that many research projects that are published usually include a population of white females, middle-aged. Those outcomes are not generalizable to the underrepresented minorities.
09:47
Or to a female who is black or Hispanic Latino though that would not those outcomes would not be applicable and would not be uptake or implemented in the community. So increasing patient diversity in our research projects is even more important. But it should not be a checkbox on a researcher’s agenda. Increasing diversity means that you’re going to have a diverse population participate, because it is important to have generalizable outcomes for all. So on the previous slide, we alluded to, the research has been carried out where the intervention was to the patient or about the patient.
10:32
Again patients who are involved as partners is the important part that we’re looking at here. We noticed and recognized patients’ participation, that they hold that lived experience or perspective and this will improve the efficiency and value of the research. Researchers are very interested in getting the outcomes out through peer reviewed journals. Peer review is extremely important for an academician. Peer review is important for a patient to recognize that research has validity. However, when patients are reviewing the outcomes of that research, it is not always clear as to what went on, what the outcomes mean because the scientific rigor and scientific methodology, the scientific language that is used is not patient friendly. So we’re seeing that many of these journals, the peer review journals, are starting to ask for plain language sheets, infographics and even short videos to describe the literature or what occurred in that research project for patients specifically. So this gives us a different view of sharing the findings of these scientific research projects in a different way that will be more meaningful to the patients. Who then? Again, they’re the ones that we want to get that change in practice or we’re wanting to make sure that they have access to medications and so forth.
11:59
And so by sharing this information in a menu or in a venue that is outside of academics will get us to the right people at the right time. Also, having patients participate increases the accountability and transparency of research because that has been one of the negatives that occurred many years ago. Is that the research on what occurred during the process, the protocols were not clear and they were not transparent. And so we ended up having these negative connotations and negative outcomes that could not be uptake by the people who were even interested in the topic. So patients have a right to provide input to research on their own condition.
12:41
It is, it should be an expected right of all of us. So the benefits of you, involving you, being involved in research, is that the quality and relevance of that research is going to be stronger. Especially again if you’re able to consult, participate, collaborate with the researcher, you can influence the choice of the research topic. Going and meeting with the research team either virtually or face to face gives an opportunity for you to learn about what that researcher’s focus is and if that focus is dealing with asthma or allergies. Related conditions. If it is focused on severe asthma, for example, and you yourself have lived with severe asthma, or have a care or caring for someone who’s lived with severe asthma, your perspectives, both of them are extremely important to the outcomes of that research.
13:33
You can contribute to the project design and the methodology and you might even change the methodology on the way that the research project is performed. You also would have the opportunity to review the protocol, which are the steps that are involved in walking through each piece of the research project, that also includes recruiting the population that you’re wanting to focus on and the inclusion or exclusion criteria that lets us know who and who cannot be in the study. Also patients that come from all backgrounds. Patients are statisticians. And so maybe you have a patient or maybe you yourself have a background in Biostatistics.
14:14
You would be a valuable person who has asthma and. In a statistical background in analyzing data, even if you don’t have a background in statistics, a patient’s perspective on the analysis, learning how the analysis works, what they’re looking for to answer the questions that have been asked, the analysis may be viewed differently by a patient than by the statistician. Distribution of those results, we talked a minute ago, but the distribution of results may need to be distributed through the communities of interest.
14:47
And that means that they are distributed through either social media, that they’re distributed through a faith leaders congregation. Maybe they’re distributed at A at a garden somewhere. There’s different ways of getting information out. It might even be distributed through artwork. So different ways of thinking of things from the patient’s perspective versus the researcher’s perspective. And all of this culminates in a positive effect on the researchers and the research process. Ok. We have another poll question for you. This one is whoops. Sorry about that. This one is true or false? Patient and caregiver participation increases the accountability and transparency of a study.
15:35
So this one’s a true or false, or an I’m not sure patient and caregiver participation increases the accountability and transparency of a study. So if you could key in your answer there true, false or I’m not sure. Ok, I’m going to give it just another minute or two. Everybody’s getting their votes in very quickly. All right. Here we go, and. We have 96 % of you said true and 4 % said false. So I think that’s pretty definitive and. Will continue then. So where can you as a patient or a caregiver participate? What are the different types of research? There are all sorts of ways that a patient or a caregiver with experience can participate, and experience with the condition that we’re focusing on.
16:38
So one of those is providing expert opinion. An example of this is where you participate in an opportunity where you’re one-on-one with a researcher, they ask you a list of questions and then you’re giving your opinion of living with a disease or utilizing a certain device associated with the disease such as asthma using an MDI versus a nebulizer, something like that would be your expert opinion. Serving on an Advisory Board gives you the opportunity basically to give your insight of living with the disease and again giving the Advisory Board could be made-up of a group of patients and stakeholders such as your physicians, researchers, people in the public, pharmaceutical reps, pharmaceutical company participants.
17:25
So you would have a group of people who are advising something rather than being in academics, how to move forward with a certain device, medication, so forth. And in that realm the patient or the caregiver again would give their advice as to what should be occurring from a patient and caregiver perspective. The focus groups, these are pretty interesting. Sally and myself have recently hosted one of these for patients who suffered patients who were diagnosed with atopic dermatitis in underrepresented minorities. And so we had a list of questions each of the patients, each of the participants had an opportunity to share their experience based on that question. And at the end of all of this, we wrote up basically a discussion guide and a discussion result document for the people who were sponsoring the focus group and that gave patients the opportunity to share their lived experiences. You’ll see sometimes that surveys are offered to you through the email. Or through a app on your phone and surveys are always interesting depending on the questions that are being asked.
18:36
But surveys are another opportunity for you to give your opinion and your lived experience when it comes to official, like a clinical trial, or an intervention of some sort developing questions is another opportunity and then we can talk about patient centered outcomes and comparative clinical effectiveness research here just a second. But both of those are very patient oriented types of research where the patient. Pretty much drives the research project, but the researchers themselves are more of a moderator if you will. It’s a different concept, it’s a very different methodology, but Patient Centered Outcomes Research Institute has really been the leader in patient centered outcomes and comparative clinical effectiveness research.
19:22
The comparative clinical effectiveness research is the opportunity to compare two ways of providing some type. Of intervention, what is happening in the clinical setting currently versus something that might be coming out that’s new. It gives you the opportunity to participate and come look at each of those devices for example, and look at the benefits and the risks or the benefits and the hazards of using that device.
19:48
And then based on your experience you would share that with the researcher. The clinical trials are interventions such as Sally and myself sharing those clinical trials are more of the opportunity for you to be the subject. Or again, the intervention, a device, that therapy of some sort would be offered to you would follow the protocol, and then at the end you’re the way that things occurred or happened to you will be included in the research outcomes. But you yourself would never be identified at all. In any of these types of research opportunities.
20:21
Everything is anonymous, and the person hosting the research or the researcher would give you basically an anonymous anonymized number of some sort. So that you would not be identified in anything unless you opted to provide. Informed consent to do so what is patient centered outcomes research? This is something that the Allergy & Asthma Network has been participating in for the last two years. This research is a type of clinical effectiveness research, but it directly compares existing healthcare interventions to determine what works and what doesn’t.
21:03
The IT is going to focus on topics and questions that are most important to patients and so earlier in the presentation. We talked about patients being involved and why? It’s because the outcomes again are going to be more important and are going to be more applicable and implemented over time. So outcomes are that are most important to patients and those who care for them, the carers or the caregivers. Also the PCORI, the PCOR type of research works closely with healthcare stakeholders.
21:33
And those stakeholders are not just the scientists and the clinicians and the health system or the insurers and policy people. These are the patients and the caregivers. And so it takes the whole team to make the outcomes what we need them to be. It requires patient engagement, and engagement means that the patient has a seat at the table with everyone else and have their opinion and they’re up there. Voice is at the same level as the researcher or the scientist or the healthcare practitioner. Everyone is looked at as the same. We refer to each other by our first names. There are no titles, or so forth. So the engagement is all on the same level so that each of us comes to the table with our expertise and then we are able to share that together so that again the research outcomes of this project will be applicable and uptake able for the community of interest.
22:30
The PCOR or patient centered outcomes research again considers those preferences of the patient. It investigates what works for whom under what circumstances in the real world. Some places you may hear people refer to patient centered outcomes as real world research or translational research. That is because you’re taking, at the research project, from the research lab, out into the real world to learn what it, whatever the intervention is going to be. With patients and the patients then help move the project forward under whatever circumstances. And then at the end, what we find out is that those outcomes are better and that the patients and the stakeholders can make better informed decisions about their own health and about their health, healthcare options.
23:19
So it pays close attention to conditions like asthma that have a heavy burden on the healthcare system or on patients, even atopic dermatitis. There’s a number of diseases that are out there. Cancer is another one, but we focus on asthma and allergies and related conditions. We know that many patients don’t come to the table with one disease. They have a number of conditions and so they will have comorbidities based on all of the diseases or all of the conditions that they have.
23:47
Some conditions may actually be under-studied or rare and there’s some of those that exist in the Allergy & Asthma Network, also conditions that vary because of the subpopulations such as underrepresented minorities that we will see a difference in the outcomes. Different populations, and so we want to make sure that all voices and all patients are a part of the research project. So ensuring that the patients and the stakeholders have a partnership, again, this is a little bit different from the concept that you, as a patient and a caregiver, would partner with your researcher or the stakeholders that are involved in the research process. So you’re involved with the enterprise of healthcare, you’re actively engaged and you would make an impact on the research process from the development of the priorities of what that research process is going to focus on all the way.
24:48
Through the dissemination and the uptake of those research findings, you would not just be a subject, you have way more input than that. So you would achieve these extremely important goals. Through the influence of the research to be patient centered, relevant and useful to the population of interest, we would be able to establish trust and remember that the way that research has been practiced decades ago actually destroyed trust and it made people fearful to participate in trust so by including patients in research, it does take time to develop a trust worthiness between the two parties or three parties.
25:31
It also provides a sense of legitimacy to the research findings because patients have been involved in the process from the beginning to the end. And it encourages a successful uptake of all of the research results. And that’s really the goal of research. So PCORI, the patient centered Outcomes Research Institute has an ambassador program and I share this with you for the opportunity. If you are interested in getting a little bit more knowledge or education then you are able to go on to their website and learn about their ambassador program and even get involved with ambassadors to where, if patients, I mean excuse me, if researchers are looking for patients who have the training to participate in a research project, you would already be well prepared. Now this program provides research fundamentals because in order to participate at the table, even though you come to the table with your lived experience, we also want to make sure that you feel confident to participate and that everyone is on the same playing field. So there’s some modules that the interactive learning modules from PCORI give us an opportunity to learn about the questions on how to design a study from the patients point of view, and the researchers point of view. It also gives us the opportunity to learn a little bit about informed consent and study protocols and what that looks like and then it goes through the recruitment and retention of patients and participants and then how to share the findings.
27:09
All five of these modules I have taken myself. It gives the perspective from you as the patient caregiver and then from the researcher or the clinician’s perspective it’s a fabulous opportunity to gain knowledge if you’re interested in participating in research. So some people may find that when they think about research, they’re thinking, well, I don’t have that much time. I have a full time job, I have a family. But it’s going to participate will depend on the type of study or the type of research that we’re looking at. Many studies can vary from 3 to 20 minutes.
27:51
If it’s a survey, however, expert opinion may take one to two hours to participate. And much of this is going to be done through an app, through zoom, a webinar or through the telephone, the commitment for some of the advisory boards or even clinical trials. Are going to be probably a year, could be 2A year where you would meet every month or so with that Advisory Board for about an hour and a half to two hours.
28:17
So the commitment is you know just depends on what you’re willing to participate in and again that clinical trial is going to vary on time depending on what the trial is looking at and what you’re committed to do. This gives us an example of a clinical trial and kind of a timeline. It is a little overwhelming to look at, but I wanted you to get a feel for different places that you could plug in a clinical trial from the planning stage all the way to the evaluation stage. So again, you wouldn’t have to participate in all of it, but you could participate in a piece of the process. So this is, again, there’s an opportunity for you to see how this timeline could plan out.
29:01
So what are the expectations of a person who participates in any form of research? The expectation from the researchers point of view is that you’re committed, that you’re honest and that you are present when you’re present. And the reason I say this is because sometimes patients or caregivers who participate in research sometimes will fall out because of personal reasons, the inability to get to the site, the, you know, transportation may be an issue so forth. So there’s ways for us to overcome the transportation issue is to take our research project out into the community.
29:33
Some researchers refer to that as community based participatory research. That’s a whole mouthful, but it gives credibility to the research because the researchers are actually in the community of interest, and then the community and the researchers can work together to overcome that presence. So if we’re not able to get to an academic center, for example, because you live an hour and a half away, then we could bring the research to the community or to the participants so that they can be present when necessary.
30:01
If it’s possible for the research project to take place, to be honest, we don’t want the patient to tell us what we want to hear about a device or therapy. We want you to be honest and tell us that the device did not work for me because of XY and Z. That medication tasted terrible. It made me stay awake at night, so forth. We want you to be honest and then we want you to be committed for the period of time that you of that research process.
30:35
So people always ask are we compensated, is there an incentive for me? And ideally yes, ideally through any type of research, our patients and caregivers, we participate. Do you have an incentive and this is built into many of the grants or the funding for the research projects. For many surveys, the completion usually can be anywhere from 5 to 100$ depending on the time that you’re committed to. And the standard rate, is standard rate for an expert opinion Interview Focus Group in the US is about 80 to 100$ depending on again how long that’s going to be. The clinical trials will have varying types of compensation depending on what that trial and what the funding covers, but again, it just depends on where you’re at and what that funder has been able to cover. The compensation can be in check, it can be in cryptocurrency these days, it can be offered in an Amazon gift card.
31:32
And there’s different ways of. Was to be delivered and supported to the patient or the caregiver who opt to participate. So what opportunities exist here at AAN ideally, we would love for you to become a research partner. One of those ways is to join our Asthma three sixty registry. There’s a link in the handout for you to go to. The registry gives those of you who do have asthma we would love for you to participate in the registry.
32:02
This is a research registry so that as you are completing the surveys that are housed within the database, what will happen is that we can share information with you. About the different clinical trials or other types of research that are taking place specifically focused on asthma. We also have a COVID registry and under the last couple of years the COVID registry allows those of us who have had COVID or those of us that are caregivers of someone who is, who has had COVID.
32:31
It gives us an opportunity to complete a survey, provide a little bit of information about living with COVID or living with someone who has had COVID and we are currently in the process of updating this COVID registry to include. A COVID long haul survey for those of us who have lived with someone who has experienced COVID long haul or the patient themselves completing that survey. So we’ll be sending out information about the COVID registry update soon. The other way to get involved is to join our research newsletter. I’ve shared a little bit about this before. It is a bimonthly newsletter and it would come directly to your email.
33:09
It is beautiful and you can look at it on your phone. It’s mobile friendly. It allows you again to connect with those research projects that we are promoting at the time of the month and also then you can get information from or for that research project. And we promote anything from a survey all the way to a clinical trial. The website is also another way that you can identify or learn more about participating in research and this is updated based on the research newsletter and you’ll see that on that website there’s opportunities for engagement with research.
33:48
You’ll see small tiles on the page and each of those tiles links to a specific research project. This is one way for you to get involved if you wanted to, kind of surf the website if you are interested in doing that type of. Search for research. I’m hoping our video works. Every once in a while it does and then it doesn’t. It is supporting my confidence and knowing that my opinion is valuable and that through hearing my voice changes slowly possible not only on the local level but also on the broader, more complex and institutional levels, my participation has given me certainty and knowing that I have contributed to a great cause through revoking my life experience, input, advice and opinion for this work.
34:44
And we have another poll question before we’re through here after hearing about the different types of research opportunities. What up, what kind of opportunity is of interest to you? So here we go and we’re going to launch our poll. Would you be interested in research that would have to do with expert opinion, Focus Group, Advisory Board, a clinical trial or answering surveys. So this is just you’re not committing to anything by answering this question. We just wanted to be able to see, you know what your thoughts were on what kind of focus for research appeals to you. So it’s just kind of an interesting thing to take a look at. You know, like I said I participated in a clinical trial. I’ve never said to myself Gee I should, I should do that. But one came along that really related to some health issues in our family and it was very interesting and it was compensated, which is never a bad thing. And so if you can just take another minute and get your opinion in here. These are always anonymous questions on our polls as well. Ok, just another minute if you’ll finish up voting.
36:04
Ok. And our results for this are pretty evenly more people wanted to answer surveys than anything else, but everything else is fairly close between expert opinion, Focus Group, Advisory Board and clinical trials. That’s very interesting. It is and I really appreciate you sharing your interest. Again like Sally said, there’s no commitment. We are trying to figure out, kind of where we should focus getting information out to you, the patients and the caregivers that are meaningful to you. So surveys seem to be most meaningful to you. So that gives us an idea of where we need to focus. So thank you. Ok, well we have a comment from Andrea this morning, this evening afternoon oh good heavens, she says.
36:52
I was lucky enough to be involved in a PCORI grant, and my input helped them change the research. Our PAP I didn’t realize until it was important to track all children with asthma under 18, not just up to age 12. Also the importance of tracking partial missed school and work days, not just missed school and work days. Researchers listened to me and changed the study. The data gathered was more useful and made it big in compact after they changed the study. So that’s very interesting. That’s just what you were talking about, isn’t it DeDe? Yes, Sally, it is, and thank you for sharing your experience.
37:28
You have demonstrated exactly what we’ve been talking about. We had a PCORI event also with AAN that we were supporting a virtual series that was engaging Hispanic patients and caregivers who have been diagnosed with asthma and COVID that we were teaching about patient centered outcomes, how to get involved, what that looks like and then even the asthma COVID. Research specific to the Hispanic population and we gather together a group of patient advisors and we had a faith leader, some practitioners and patients from the Hispanic community. And they made it very clear to us that we needed to include the virtual series in Spanish, that it and you would have thought that we would have known that.
38:19
But we were so thankful that they did share with us the importance of being culturally and linguistically appropriate that we invested in our interpreters and translators to help us with the handouts and also the translation interpretation during the webinars which made the webinar more robust and made the outcomes of that research well. The outcomes of the engagement of this research project at the end of the day made the outcomes more robust for us and the patients who attended were much more.engaged because of the Spanish content being shared with them. Oh, that’s so interesting. Ok, the next question is. If I’m participating in a clinical trial, I assume that I’m going to find out my own results, but will I find out the results of the entire study? That’s a great question. And ideally, depending on how that study is designed, you will know your results, you can request your results, and then the only way that you would learn about the results of the study for all participants, those that stayed in, withdrew and then completed is when the researchers publish those results, they can send a group overall analysis to all who participated that request that.
39:47
So there’s a way to request it in writing. Or the researchers may already tell you in the informed consent that at the end of this research project, we will be sharing all the results with all of those that have participated. Ok, we have another comment. I’ve done quite a few research projects and know they are sponsoring me to get a booth at a County Fair and reduce the stigma and point people with lung issues to the right decisions as far as learning. That’s very interesting. Oh, I love that. Yeah, I love that. I do. That’s great. The next question is research always local, or can I participate in a national study? Sure so that’s a great question also and I appreciate you bringing that up.
40:33
The research may be local if you are living in a larger city. We’re finding that some studies are moving into rural populations, but other studies depending on the focus of the study, it could be a national study. So if it’s a survey, if it’s thought, if it’s a device that we could mail to you. And you use that device in your home for a period of time, then that would be a national study. So the answer is yes to both.
40:59
It depends on the focus of the study. Ok. Well, that’s it for our questions today. So at this time, I’d like to thank Doctor Gardner for being with us today and we really appreciate you sharing all that information about looking at research and how we could get involved in this vital process. So thank you very much for your time today. Thank you. Please join us for our next webinar on asthma and COVID-19 care and education at appropriate literacy levels with Doctor Purvi Parikh, Doctor Michael Bowman and Tonya Winders on Thursday, June 16 at 4 PM Eastern Time.
41:38
You can register for this and all of our webinars at allergyasthmanetwork.org Scroll all the way down to the bottom of the home page to find our webinar recordings and links for registration. Thank you so much for joining us today. This is Sally Schoessler for the staff at Allergy & Asthma Network. We are working towards a future where we can all breathe Better Together.
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