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Gerry Lee, MD (Host): Primary Immuno Deficiency Disorders or PIDDs, affect all races and ethnicities, but certain groups have experienced greater social or economic barriers to diagnosis and treatment. The goal of the Moving Toward Equity podcast series, is to raise awareness of the challenges, strategies, and resources for moving the needle toward equitable immunology care for all patients and practitioners in all communities.

Welcome to the podcast series from the American College of Allergy Asthma and Immunology. My name is Gerry Lee, and this is the second of our three-part series entitled Moving Toward Equity; Disparities in Primary Immuno Deficiency Disorders or PIDD. In this episode, we will discuss addressing the barriers to the diagnosis of PIDD in minority and underserved populations.

Joining me today, is Dr. Vivian Hernandez-Trujillo. She is the Director of the Division of Allergy Immunology and the Fellowship Training Program director at Nicklaus Children's Hospital. Dr. Hernandez-Trujillo has been involved in Hispanic outreach for over 20 years. And she has partnered with both the Immune Deficiency Foundation and the ACAAI, as well as media to raise awareness of PIDDs through programs in Spanish for healthcare professionals and patients with PIDDs, and most recently on COVID.

And Dr. Carla Davis. She's the Chief of Immunology Allergy at Retrobiology Section of the Department of Pediatrics at Baylor College of Medicine at Texas Children's Hospital and the Janie and Sandra Queen Endowed Chair in Immunology and HIV/AIDS. Dr. Davis has been involved in the identification of health disparities in the field of allergy immunology and has formed research on Primary Immune Deficiencies for the past 20 years.

Thanks again for joining us Doctors.

Vivian Hernandez-Trujillo, MD (Guest): It's a pleasure to be here.

Carla M. Davis, MD (Guest): I'm happy to be here to talk.

Host: So, at the last episode, we learned so much about the barriers some of our patients face regarding getting the diagnosis of a Primary Immunodeficiency. What can we do Dr. Davis, as individual clinicians to address these disparities?

Dr. Davis: Well, I think there are many things that individual clinicians can do. As providers, we can ensure that we are available for referrals from physicians who see minority or underserved patients who may have Primary Immuno Deficiency. We can allow room for specific patients who need subspecialty care, who may have immunodeficiency, but have public insurance.

Allergy Immunology specialists can educate primary care providers regarding the signs and symptoms of Primary Immunodeficiency and really develop relationships with providers who may see more minority patients. When individual clinicians see patients from these populations that are from under diagnosed, underserved communities, there can be impediments to painting a diagnosis with patients that have these signs and symptoms that are consistent with Primary Immuno Deficiency. So, first and foremost, we, as clinicians should establish trust and identify and address any hindrances to the patient's understanding of the importance of establishing the diagnosis. Of course, culturally sensitive education, in a patient's language on a specific disease should be provided for the patients or their families. And in some cases, special testing is necessary. And if these tests are not covered by insurance, these economic or logistical barriers should be addressed.

The personnel who can be really helpful in addressing these logistical barriers include a specific nurse that might be designated to address these issues in a person's office. Or a social worker who is associated with an institution or a practice. So, working with the primary care provider can also help to decrease these barriers to care.

So, first we have to identify them and then address the issue. It's helpful to ensure an individual clinician's office staff are culturally competent. So, an environment where diverse populations can feel comfortable. It can be provided. So this is really important. I recommend also a non-biased approach for screening for social determinants of health.

And there are surveys that are very short and could be given to patients in the office visits by office personnel. Social service resources can be provided to address these concerns through the social worker or the primary care provider. It just, it's really important that we gain trust from our patients in order to partner in their care. If there are any barriers, sometimes involving important trusted family or community members in shared decision making discussions, to make decisions for testing, office visits, and treatments can really be helpful in building a strong physician-patient relationship for minority or underserved populations.

So, there are a plethora of things that individual clinicians can do in order to address under diagnosis of Primary Immuno Deficiency in these populations.

Host: Wow. There's so many things we can do. That's really wonderful. And Dr. Hernandez-Trujillo, I just wanted to know if you wanted to add anything? I know, particularly you have a lot of experience with the Hispanic population.

Dr. Hernandez-Trujillo: I think something interesting that you said, which we don't talk a lot about, Carla, is the importance of shared decision-making and as, as important as it is for us, with all of our patients, I really feel that in groups that may feel distrust, in groups that may feel that they're not being understood, it's even more important.

So, that I think is number one. Something else I'd just like to share personally, you know, if I think back, many of the stories, my parents were immigrants to this country from Cuba and in the 60s, my mom will still tell me stories that one of her major jobs was to go with whoever was going to the doctor to translate. She still talks about that. And as much as I think it probably has improved somewhat, this was in the Midwest where probably there weren't many Spanish speaking people, but even in my own state of Florida, in this day and age, especially during the pandemic, I still had families that said to me, we couldn't understand the healthcare team. We didn't know what was happening. I had a family whose daughter was actually dying in ICU and they called me to call the healthcare team to speak to them so that I could tell the family what was happening, because nobody there spoke their primary language. So, I think there's still a lot that we can learn.

And I think there's a lot that we can do. And you'd be surprised how far it goes when you just try to make a little tiny effort, right? You don't have to speak perfectly, but you can meet in the middle. And I've seen that many times with great success.

Host: Yes, absolutely. It's so unfortunate. There's just a lack of resources for patients who need to understand the information to make very important healthcare decisions. Wow. I really appreciate both of you bringing up a lot of solutions, but I think there's also just a gap in knowledge or a lack of understanding in the literature about these disparities. So, Dr. Davis, what should allergy immunology researchers focus on to address these disparities in Primary Immuno Deficiencies?

Dr. Davis: Yeah, this is a really important question because as we know, the research that we do fuels the treatment and advancement in treatment, and we would like these treatments to be available to our diverse populations. So, enhancing diversity and inclusion in the clinical research enterprise in general, serves to really advance science and healthcare.

And this may really help reduce the health disparities and health outcomes that we see. So, first of all, I think researchers can actually study and specifically identify the barriers to care in underserved populations with Primary Immuno Deficiency. There are a vastly small numbers of research studies that identify these, and through this research, strategies can be developed to address the barriers. So, we do need more research in the area. Now for treatment studies and even diagnostic studies; we must think about inclusion of diverse participants. And this requires really a lot of thought and planning from the earliest conceptualization of their research question. And in clinical research, it's very important to engage all the stakeholders, and have some kind of affirmative commitment that the stakeholders think, you know, that this is a pretty good idea. So, best practices for this are proactive planning for recruitment and retention of a diverse population. So, as you're planning this study and it must be appropriate for the disease population, of course, especially in Primary Immuno Deficiency. You want to engage patients, caregivers, loved ones.

Patient advocacy groups can be really helpful. And then also, communities throughout the clinical trial life cycle, from trial design, conduct, recruitment, retention, analysis, and then return of results so that those who have participated understand what their participation meant. And then from that point forward, the goals of the research and outcomes can be optimized to be relevant to those specific populations.

Now, other proven strategies to engage minority populations in clinical research, includes using inclusive images and language in recruitment materials, really empowering participants through engagement with their communities and practitioners, partnering with clinics that might have specific populations to diversify the participant pool. And of course, having a research team and staff that are culturally competent and can relate to participants. I think a great way to increase cultural competency is through training and really, monitoring the recruitment and retention of participants.

If they're participants who decline then those should be placed on a list to be contacted in the future. And then really looking at the reasons why they declined, especially in minority populations would be helpful for the future. So, really in summary, you know, consideration of these populations in all Primary Immuno Deficiency research efforts would go a long way in ensuring appropriate representation of diverse populations.

Host: Yes, it absolutely makes sense that when we're planning studies on allergic immunologic disorders, we really have to be as inclusive as possible. And maybe perhaps include that in the grant application. So, we're making sure each study addresses the needs of all populations. Dr. Hernandez-Trujillo, you mentioned your previous partnership with the Immune Deficiency Foundation. So I'm very curious, what can national organizations do or what are they doing already to address the needs of minority and underserved populations with PIDD?

Dr. Hernandez-Trujillo: So, certainly different approaches have been taken to help address this underdiagnosis of PIDDs in our patient populations. First of all, providing access to resources in Spanish in really the first approach. And there have been translation of different types of information by the Immune Deficiency Foundation, including their patient and family handbook, which is available online in a PDF format.

I've also partnered with the Immune Deficiency Foundation to create videos in Spanish about COVID, during the pandemic as early as spring of 2020. And we held the first Spanish patient forum virtually in the spring of 2021 to just explain basics about the immune system and describe immunodeficiencies disorders in general. And this was very successful. This also provided patients and families, the ability to take part in a question and answer session. So, they were asked very, very relevant questions regarding their own health or their family member's health. And then as part of the national idea of virtual patient meeting in June, excellent panel discussion about healthcare disparities in patients with PIDDs.

I also recommend using IPOPI. IPOPI's the International Patient Organization for Primary Immunodeficiencies and they have resources available in many different languages about Primary Immuno Deficiencies, about their treatment. And I think something to just keep in mind with was mentioned by Dr. Davis earlier, is we need to keep in mind when we translate things still, especially when we translate, it has to be at the correct literacy level. Right? So, if it's in language, that's well above where someone's going to understand, then you really didn't achieve what you needed. So, that's one thing that when I partner with patient organizations in particular, in translation, and we need to keep that in mind because we want to make sure that we are targeting and reaching the people that most need the information.

Host: That's wonderful you are able to partner with these organizations to provide the translations for patients to make healthcare decisions. That sounds like a wonderful resource. What are some of the other resources you would recommend clinicians use to just improve their own recognition of a Primary Immuno Deficiency?

Dr. Hernandez-Trujillo: So, the resources available through the Immune Deficiency Foundation really are there to help clinicians improve their recognition of PIDD. So, the idea of diagnostic and clinical care guidelines for PIDDs and then a clinical focus diagnostic approach to antibody deficiencies are some examples. There's a variety of based on the disease state. There's also an excellent guide for nurses for immunoglobulin therapy for PIDD that's available for everyone to access. And then the practice parameter, I will say for the diagnosis and management of Primary Immunodeficiencies, as well as the work group report, which was an update on the use of immunoglobulin in human disease.

These are all excellent and they're available, as excellent resources for all clinicians. I also recommend just going to the Immunodeficiency Foundation website, which is www.primaryimmune.org, where you can access many of these resources.

Host: So, Dr. Davis, would you add any other resources we could use?

Dr. Davis: Those are really excellent resources Dr. Hernandez-Trujillo mentioned, and I use those all the time. In addition, I would say that there is a Primary Immunodeficiency Guidelines Pocket Guide, that's been approved by the American College and Academy of Allergy Asthma and Immunology. It's available online or in print at www.Guidelinescentral.comshop/ primary-immunedeficiency-guidelines-pocket-card. And so this might be helpful for busy clinicians who want to keep something in their pocket. I also use an online resource that is www.immunodeficiencysearch.org, that can help a clinician identify tests and labs appropriate for diagnosis of patients' Primary Immuno Deficiency based on clinical symptoms or even a specific organism causing the infections. But there are many, many resources for now clinicians who would want to improve their recognition of Primary Immuno Deficiency Disease. And these diseases have just expanded exponentially over the past few years. So, it's really important to look back at these resources as a refresher when you're seeing patients.

Host: Well, these are wonderful resources we can use to help our ability to advocate for our patients with Primary Immuno Deficiency Disorders. So, we'll collect these and put them on the website associated with this podcast. The website again is education.ACAAI.org/disparities. And keep in mind, we also provide an interactive Primary Immuno Deficiency ePerimeter to go over the recognition of a Primary Immuno Deficiency. So, that concludes part two of our three-part series on Moving Toward Equity; Disparities in Primary Immuno Deficiencies from the ACAAI. Please join us for the future episodes on improving access to the treatment of PIDDs. And for more interesting episodes from Allergy Talk, please visit us at college.Acaai.org/allergytalk. And to receive CME credit, visit education.acaai.org/allergytalk. Again, this is Dr. Gerry Lee for the American College of Allergy Asthma and Immunology.

Enjoy the rest of your day.