Debra M. Wujcik, RN, PhD: Engaging Participation of Minority & Medically Underserved Patient Populations in Clinical Trials
Debra M. Wujcik, RN, PhD
Vanderbilt Ingram Cancer Center, Vanderbilt University Medical Center, Nashville, TN
Editor of ONS Connect Magazine
Selma R. Schimmel, Founder, Vital Options International
This is Selma Schimmel at the Oncology Nursing Society Eleventh Research Conference where we’re meeting in Los Angeles and speaking with many of the senior nurses involved with ONS, the Oncology Nursing Society, to find out what is being presented, what are the hot topics… And we are now joined by Debra Wujcik. And Debra, you are also a PhD in oncology nursing and you are affiliated with Vanderbilt Medical Center. You’re the Director of Clinical Trials at Meharry Medical College.
Debra M. Wujcik, RN, PhD, Vanderbilt Ingram Cancer Center, Vanderbilt University, Nashville
Yes, that’s correct.
Selma R. Schimmel:
And I know what your passion is because we talked about it before, and it’s clinical trials.
Debra M. Wujcik:
Yes, I work with clinical trials in a medically underserved population.
Selma R. Schimmel:
So let’s talk a bit about the role that the oncology nurse first plays in the clinical trials and research setting.
Debra M. Wujcik:
Well, the research nurses that I work with, we have two different levels. So, we have nurses who are research nurses and then we have nurses who are nurse researchers. So, the nurse researchers are trained at a higher academic level with doctorates in research and so the nurse researchers can develop, design and present their own research studies. But the research nurses themselves are integral to the process as well because they’re the front-line people who talk with patients, explain the research studies and help patients really make that decision as to whether or not they’re going to participate in the research study.
Selma R. Schimmel:
You’re working within even a more challenging patient population of underserved and minority patients and that probably presents a whole other spectrum of issues.
Debra M. Wujcik:
Well, eleven years ago I started working at Meharry Medical College. We have a partnership grant between Vanderbilt Ingram Cancer Center and Meharry to do cancer clinical trials. And I was asked to start up this program because I had extensive experience in managing clinical trial staff at Vanderbilt. What I was told was that minority patients, medically underserved populations would not want to participate in research; that they had a lot of fears about experimentation, a lot of mistrust for the medical system. So I went with that expectation. What we found, however, was that if we use the same processes that I was used to working with patients- that is, from the very beginning of their cancer diagnosis we include the potential for participation in research as part of a standard of care treatment option for them, that they were just as likely to agree to participate in a clinical trial as patients who were not minority or not medically underserved. So based on that work that’s taken place over the last eleven years, we’re now moving out more into the community, which is the research that I’m presenting here at this conference. We concluded that at the time of cancer diagnosis it was a little late to be talking about participating in research. A person who has just been diagnosed with cancer has enough on their plate. They’re scared, all they hear is cancer and all of the things that they may associate with that diagnosis. So that’s a hard time to start talking about the importance of research. So we now have a strategy where we’re going out into our community that we serve to try to talk about clinical trial participation before they’re faced with that treatment decision.
Selma R. Schimmel:
When we talk about minority patients, what is the cross-section, the ethnic diversity?
Debra M. Wujcik:
The group that I’m working with, the patients that we see, it’s about fifty-five percent African American, about forty percent Caucasian, and about five percent Hispanic. And all of the patients that we see at our institution are under and underinsured so that makes them a medically underserved population.
Selma R. Schimmel:
And how important is it when you do the outreach to try to find an oncology nurse that comes from a similar background to break down the barriers of fear and trust issues?
Debra M. Wujcik:
There has been some research that indicates that when research is presented by someone who is representative of your race or ethnicity that it’s received in a better way; that’s not been our experience. We have found that with cultural sensitivity training, with understanding the community that you’re serving, that it’s not particularly a barrier to be not the same race or ethnicity.
Selma R. Schimmel:
Where do economics come into play as far as a barrier in reaching minority populations for participation?
Debra M. Wujcik:
Well, access to healthcare is a huge issue for medically underserved persons and so you have to overcome that first of all. So we, at our institution, at Meharry Medical College, where we see the minority and underserved persons, we have to get them healthcare first of all; and healthcare includes clinical trial participation. So we have to start with access to healthcare and then clinical trial participation is not really an issue because you’ve gotten them through the doors.
Selma R. Schimmel:
And I think it probably is overlooked by many people, the understanding that even if you do not have adequate health insurance or you don’t have a lot of financial freedom, that many of the state-run county, major teaching hospitals take in a number of patients that are accessing clinical trials with the same medical team that someone with, perhaps, better health insurance or a more financial means is able to access.
Debra M. Wujcik:
Right, we’re trying to level the playing field, so-to-speak, so that insurance is not the barrier to participating in a clinical trial.
Selma R. Schimmel:
How is this information being assimilated and ultimately, how does the Oncology Nursing Society take this information and really help with this paradigm shift and this inclusion issue across the country?
Debra M. Wujcik:
Well, what we are learning from our community, and again, the research that I’m presenting at this conference is the result of town hall meetings out in the community and asking community members, “what do you know about cancer clinical trials? What do you know about medical research? What would cause you to not want to participate? And what would cause you to want to participate?” So, the generalizability of this study is the process that we’re using and just describing this model and how another research nurse could take that into her community and use some of the same principles. Locally, we also are taking the findings and we’re applying them, we’re giving, feeding this information back to our researchers to say, “If you are wanting to solve the issues and study the problems in this community, here are some things you have to consider.” So, barriers, clearly, were ‘mistrust of the healthcare system’ and ‘fear’; so you have to address that up front. So, we use that in, when we present a clinical trial to a patient, one of the first things we’ll say is, “Have you participated in research? Do you know anyone who has? Do you have fears or concerns that we should talk about before we even talk about this specific research study?” The other part that I’m actually more excited about is that our community’s given us a lot of information about what would help them. One of the things is, of course, education; and they said, “Bring the education out to us”. So we now have a related project where we trained community members to deliver a clinical trial message and they are out in their community, whatever group they’re comfortable with, with a set message about ‘cancer clinical trial participation’ and ‘for more information here’s the number to call.’
Selma R. Schimmel:
So, if you can just briefly, what are some of the points that would increase their desire, patient’s desire to participate versus those issues that would not compel them to participate?
Debra M. Wujcik:
Specifically, they said, they’ve told us compensation for our time. For a cancer treatment trial we don’t necessarily give an incentive for that but if there was additional research, such as a quality of life component that took extra time we might consider providing some kind of incentive, a gift card, or something that says ‘we value the additional time that you’ve given us’. They’ve told us that communicating with younger members of their community is a good idea. The older persons that we had in our focus group said, “We’re pretty set in our ways. We are having a hard time with some of the modern things that are being done in healthcare but we trust our younger generation.” So that was interesting for us to target, maybe, a younger group about clinical trial participation even though cancer isn’t necessarily as high of an incidence in that age-group. But they’re giving the information to their parents and their grandparents. And another thing that they also said was to let them partner with us; that they really appreciate being able to give us feedback about the type of research that we do and that that helps when they feel part of it to then take that message back to their community as well. So we’re learning some specific strategies that we believe is going to increase participation in our community; not just cancer clinical trials, but maybe trials for diabetes or trials for hypertension.
Selma R. Schimmel:
So Debra, in closing, obviously clinical trials is very high on the Oncology Nursing Society, the ONS agenda, just summarize that a little bit. It’s such an important commitment of the society.
Debra M. Wujcik:
Well, the society again, is committed to research nurses; so these are nurses who are participating in research as well as for this conference, definitely supporting the nurse researchers and helping promote the issues, that we can make a difference, helping us to disseminate the results of our research so that others can learn from it.
Selma R. Schimmel:
With the shortage of nurses in the United States, what can we tell viewers who may be thinking of nursing as a career, what does it take to rise to the ranks? Because this is a very, very specialized and senior area of oncology, nurses on the research level.
Debra M. Wujcik:
Well, it takes a passion and a commitment. I wish we had longer to talk because I think nursing is just an absolutely wonderful profession for anyone to go into these days as our population ages there’s going to be more and more people that need care and so there will always be jobs for nurses. But as a profession, nursing allows you to practice in many different ways. And so, you can be at the bedside, you can be teaching, you can be conducting research, you can be participating in research. There’s just so many avenues open.
Selma R. Schimmel:
How far along… you know, you may have a bachelors in nursing, but you have a PhD in nursing… how, what academic background is required to move into the role of actual oncology nurse research?
Debra M. Wujcik:
Usually an advanced practice degree, so a master’s degree really prepares you to understand the components of research. At all levels of nursing you can participate in research, for sure but to be more directing that research and having your own research projects, asking the questions and designing the trials, it’s a master’s level is the minimum and then a doctorate really prepares you to lead a program of research.
Selma R. Schimmel:
Thank you. I just wanted to sort of demonstrate just how far the field of nursing has come.
Debra M. Wujcik:
Thank you. We appreciate you endorsing that.
Selma R. Schimmel:
Well, and I appreciate what you’re doing on behalf of clinical trials. Debra Wujcik, thanks again.
Debra M. Wujcik:
Thank you for having me today.
Selma R. Schimmel:
Pleasure.
END OF VIDEO