Becoming Your Own Best Advocate Through Patient Empowerment
About the Advarra In Conversations With…
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About This Episode:
In this podcast episode, Advarra’s Robann Cunningham and the Patient Empowerment Network’s Robin Barnes discuss patient empowerment and advocacy.
Chief Commerical Officer
Director of Development
Patient Empowerment Network
Robann Cunningham (03:28): Hi everyone, and welcome to the Advarra in Conversations With… podcast! I’m Robann Cunningham, Chief Commercial Officer at Advarra, and I’m so excited to be hosting today’s episode alongside Robin Barnes. We’re going to be discussing patient empowerment and advocacy. Robin?
Robin Barnes (00:23): Thanks, Robann I’m Robin Barnes the Director of Development at Patient Empowerment Network. I know we have some very meaningful topics to discuss today and I’m really looking forward to exploring them with you.
Robann Cunningham (00:34): Absolutely I couldn’t agree more and today’s episode does touch on a topic that we both have some personal significance around so I’m really excited to get started, you ready to dive in?
Robin Barnes (00:45): Absolutely let’s do it.
Robann Cunningham (00:47): Great! So, the Patient Empowerment Network, or PEN, tell us a little bit about what the patient empowerment network does.
Robin Barnes (00:56): The Patient Empowerment Network is a nonprofit organization and we are virtual by choice. What we do is to provide people who have been impacted by cancer, with the knowledge and the tools to become empowered to become co-decision makers with their health care teams.
Our resources include downloadable tool kits so that you can be equipped to ask the right questions at the right time of your health care team, animated explainer videos webinars with experts, and all of these resources are provided to touch upon every step of a cancer journey. Whether you are a newly diagnosed patient, if you are deciding on a treatment plan, or exploring clinical trials, you will be able to access information that’s going to help to quickly educate you about what you need to know to achieve the best possible outcome.
Robann Cunningham (01:14): Wow I wish I’d known about Patient Empowerment Network, a few years ago. There are also resources for caregivers correct?
Robin Barnes (01:51): You are correct, and I think that, again, we have so much in common in terms of the journeys that we have been on. I know that you yourself have journeyed through cancer and, in my case I served as a care partner for my husband. We are all very fortunate to be on the positive side of our journeys’ outcomes.
But the Patient Empowerment Network is equally dedicated to making sure that care partners are equipped to be able to navigate a loved one’s journey. Which from my own perspective, like you, I wish that I had known about the patient empowerment network when me and my husband’s journey was beginning.
Robann Cunningham (02:25): It’s so true and it reminds me of an article that I wrote two years ago, almost to the day after my diagnosis and in it, I reflected a little bit on my journey as a patient and the humbling experience that that was being in this industry. What I really took away and what’s important here is that I would define empowerment, as both awareness and advocacy and I think raising awareness, advocating, and educating is critical. I’m curious to hear your definition of empowerment Robin.
Robin Barnes (03:07): Empowerment will mean something different to each and every one of us, but at the patient empowerment network, the core of what we believe empowerment means is having the knowledge and also the confidence to become a co-decision maker with your healthcare team. And what that often looks like is insisting on personalized treatment options, it means asking questions, it means having the knowledge and education through resources, such as those which we provide to be able to come with confidence to that conversation and make sure that what you are receiving is the right treatment for you, because we know in this day and age of personalized medicine, the options are becoming seemingly infinite and not every healthcare provider may be an expert on your particular diagnosis.
Robann Cunningham (03:53): Wow that’s so true I love that you mentioned confidence because it is more than just being educated or being aware. Once you have the tools and the tools are provided in a way that they achieve that health literacy, as you mentioned that is when the confidence comes when folks can really start to feel empowered
Robin Barnes (04:11): I do believe that care partners are incredibly important to a patient’s journey. I’ve read studies that show that, regardless of your disease, whatever your diagnosis that when you are in a doctor’s office in that moment of receiving a diagnosis, most of us will remember, if we are fortunate enough, about 40% of what we are told. It’s a lot to take in.
Care partners can be there to take notes to be a second set of ears to process what you’re hearing to make sure that when that visit is over, you feel really clear about what your options are, what your action steps are and the type of information, you might want to get more information about.
Robann Cunningham (04:54): I think that some of the downloadable resources that PEN provides are great for those doctors’ visits, you know the checklists and the ideas for things to discuss with your provided.
I also think it’s really important to get a second opinion, I can share from my own experience. I very much was the example that you spoke to. I maybe didn’t even retain 40% of the diagnosis from that initial visit. I didn’t know that I was triple negative, which was extremely scary as it pertains to breast cancer. And I learned later that I also had a BRCA mutation which, as you know and as our listeners know, has additional implications and risks.
Having been in this industry, I was fortunate enough to have a great network and have colleagues that I could call upon and have a path to a second opinion and I knew I wanted to go to a National Cancer Institute-designated cancer center. I just knew that was where I needed to be for the very reason of having access to the latest cutting edge research options available. I was very fortunate with my breast cancer that my treatment was effective and I did recover, but I was definitely interested in pursuing research as a care option.
I’ve been seeing more and more companies coming into the industry who are targeting physician practices and other types of doctors to help them realize that their patients within their practice could actually be eligible for clinical research and trying to tap into that additional patient population.
I think one of the real positive outcomes for our clinical research industry out of COVID is the public awareness of clinical research. I’m hopeful that that will translate into more participation in years to come. So I know that PEN doesn’t get involved directly in clinical trials but what are you doing to help raise awareness within patients that you’re supporting?
Robin Barnes (06:54): Robann our team could not agree more with your sentiment that one of the silver linings of the COVID pandemic was the clinical trials that led us to wonderfully effective vaccines and while awareness of and trust in clinical trials has improved as a result, there are still so many misconceptions. That’s one of the reasons why patient empowerment network has been dedicating many of our resources, this year to focusing on clinical trials.
Encouraging patients and their care partners to not think of the clinical trial, as a last resort option if other treatments have failed but to consider it at the very first step of a diagnosis and that of course ties into when appropriate biomarker testing and all of these wonderful tools that we have today.
One of the programs that we offer a patient empowerment network is called Clinical Trials 101 and it’s an introduction for anyone who is considering participating in a clinical trial, but would like to get a little more information.
We also offer a companion piece to all of our webinars, particularly within the clinical trials 101 Program and so that people can download the information that they heard and revisit it, bring it to their doctors’ offices and make sure that they feel prepared, then at their next oncology visit to have a conversation with their healthcare team about whether a clinical trial could be right for them.
Robann Cunningham (08:24): Wow that’s great love all the resources and information that you’re providing. You know I work for Advarra here, and one of our core services is IRB review so it’s that institutional review board or independent review board depending on the setting. When people ask me what my company does I love telling them that I work for an organization, who is there specifically, to look after the rights and welfare of research participants, and I think it’s surprising, but also satisfying and a happy surprise when folks find out that there’s actually a federal mandate to have independent ethics review of all clinical research involving humans. We take great pride in that.
I want to go back to something you said about you’ve talked a lot about education and so what would you describe the role of education in the patient journey? What is the role of that educational material and all of the information that’s provided in that sort of end-to-end patient journey?
Robin Barnes (09:32): Health literacy is so different than any other type of literacy. We may come to a diagnosis with a great deal of intelligence and education and other aspects of our life, but that in no way prepares you for a cancer diagnosis.
If you are fortunate, not to have lived through such a journey, if you were fortunate not to have known someone in your life that has had such a diagnosis, you have to make decisions very quickly about a topic which you may have absolutely no information. It’s very difficult for a healthcare provider to know all things, and therefore we at Patient Empowerment Network feel that it’s very critical for newly diagnosed patients to become quickly educated about their disease and the treatment options.
To that end, we provide a variety of programs that break down what would otherwise be very complicated information into an accessible conversation: infographics, animated explainer videos, and checklists. We want to make sure that while a diagnosis itself can be overwhelming the process of educating yourself shouldn’t have to be.
We also want to make sure that that information is actionable. It is one thing to have an education about your disease, it is another thing entirely to find that confidence to become a co-decision maker with your healthcare team.
The way in which we build confidence and empower our constituents is by ensuring that they know the right questions to ask at the right time to make sure that they know that they ought to be seeking additional information from their healthcare team. It is more than okay to be seeking a second opinion. And in fact, many of the best doctors will encourage you to do that, because of the variety of treatment options that may be available to you.
Robann Cunningham (11:40): Thank you, that was really comprehensive and I think you touched on so many things there. If we look at across the spectrum within our population and, of course, the largest generation of folks in the country here being in that 65 and older or baby Boomer category, decentralized clinical trials or these agile modalities that are utilizing, as you said, telemedicine or other digitals: internet Wi-Fi enabled devices could be something that could prevent someone from getting involved in research and so that we come back then to health literacy and I know that you have a service, is it the “Digital Sherpa”?
Robin Barnes (12:23): Absolutely, in addition to health literacy, we think a lot about health equity. And if you are someone who either because of your age never became digitally savvy possibly because of your geographic location, you don’t have access to broadband, there are many different barriers that can prevent you from being able to achieve the best possible outcome from your cancer treatment.
At Patient Empowerment Network, we are aware that, by offering our resources virtually we can meet many people where they are in a way that is very convenient. But there is an enormous caveat to that which is that you must have the privilege of owning a digital device, having the digital literacy skills to use that device and access to an Internet connection, which sadly a significant portion of the population in the United States, as was uncovered during COVID, does not have this suite of skills or access. Therefore, we are dedicated to breaking down those barriers to participation through a program we call “Digital Sherpa”.
The foundation of the Digital Sherpa program is digital literacy workshops, which are offered to older individuals and other you know underrepresented populations that help them to become digitally empowered to navigate their cancer journey by accessing resources, such as those which the patient empowerment network offers to improve their treatment outcomes.
The way that we do this is by partnering with Community based organizations throughout the United States, where they are embedded in their local communities, they have the trust of their constituencies, and they can meet people where they are.
Robann Cunningham (14:09): What a great service and I think we’re touching on so many great resources that are available through PEN, Here at Advarra we don’t get to work directly with the patients. Our products and services are more there to enable better research to enable smarter decision making around site selection or protocol optimization, for example. So, I really love hearing about all of these wonderful resources that are just direct to the patients, as you say, meeting them where they are.
Robin Barnes (14:41): Robann, PEN is not involved in clinical research to the extent that Advarra is, but I know that informed consent is a very important part of research. How do you feel that health literacy is impacting informed consent?
Robann Cunningham (14:55): Hmm that’s a really good question and it’s honestly it’s something that I think IRBs have been talking about and struggling with before maybe the term health literacy was as popular as it is today.
One of the key roles of an IRB and research, I mentioned earlier, protecting the rights and welfare, but the end product is an informed consent document and an informed consent process. You cannot engage someone in research without very clearly defining the goals and objectives of the research, the procedures, the risks, the potential benefits detailing all of the mechanisms that are in place to protect confidentiality and privacy.
When you’re talking about health literacy and how it impacts healthcare, it also impacts clinical research. The informed consent document can be quite lengthy, but what we always like to remind the principal investigators with him we’re working, the clinical research coordinators with whom we work with, is that informed consent is a process and that’s really important.
That document is not the end all be all of your informed consent. You should have a designated period of time, where you have access to the investigator and his or her staff to ask questions to clarify understanding, maybe your care partner has questions.
One of the things I would recommend if anyone out there is considering getting involved is to really take your time through that process, make sure that you are afforded that opportunity to have a conversation with the investigator and staff. You ultimately you need to have a level of confidence and a good relationship with your investigator and their team.
It’s important to know that as a participant or a patient you should be given the opportunity to take the document home to spend time with your family or your care partners. If you are a patient, you should review all of the terms and make sure that you’re comfortable with the research being proposed.
Robin Barnes (17:05): I know that within the patient advocacy sphere, there is a popular saying, which is: Nothing about me without me” and so much of what you’ve shared today, I think, really speaks to that.
Robann Cunningham (17:17): I love that “Nothing about me without me”. I do want to talk a little bit going forward, what would you say is at the top of your list in terms of how PEN and Advarra and continue to partner to empower patients?
Robin Barnes (17:30): Partnerships with community-based organizations has always been key for the Patient Empowerment Network in order to meet people where they are to make sure that our practices are inclusive, we’ve talked about how so much of what Advarra and Patient Empowerment Network are doing is trying to make communications programs more inclusive. And that has to do with the inclusivity of how we communicate and also how we connect and so that can take the form of working with Community based organizations to help to increase diversity in clinical trials, making sure that individuals have the digital literacy and access in order to become educated about the options available to them in clinical trials, and to be able to have that confidence to connect with their healthcare teams.
Robann Cunningham (18:20): You talk about partnering with Community based organizations a lot at PEN. We’re starting to see more and more of that in our role at Advarra as well, we have technology products deployed at 50,000 research locations globally, so when you think about that access and that footprint to locations in communities again all around the world that we already have sort of that footprint as a way to continue to provide research as a care option within those communities, but also, I think, as we think about partnering with the Patient Empowerment Network, we have so many resources, we can share our expert network is in the thousands of really seasoned and tenured clinical research professionals and executives and, across clinical and regulatory I think you could really speak to a lot of the topics that we’ve covered here today that would impact patients in the network.
I have one more question for you, I would love to know what changes would you hope to see based on your personal experience with your husband a few years ago and being his care partner, and now the great work you’re doing at PEN, what would you really like to see happen in the next five years?
Robin Barnes (19:37): From a personal perspective, I hope that health care providers will stop using the term Dr. Google. We found that when we would bring questions to our visits we were told to stop trusting Dr. Google and to simply take the advice, as it was given to us. So my hope is that more healthcare providers will embrace the value of patient empowerment, because an empowered patient will ultimately achieve a better treatment outcome
On a broader level what I really hope to see in the next five years, frankly, in the next one year would be national broadband expansion.
We have to get more people online, we have to train them to be able to competently use the Internet, also to discern which resources can be trusted when they are looking to seek advice for their cancer journey.
And so, to me, we need to see greater partnerships between government between community-based, organizations like Advarra, and patient advocacy organizations like the Patient Empowerment Network to make sure that people are able to access and with confidence, go forward in taking control of their cancer journeys.
Robann Cunningham (20:49): I think, from my perspective we’ve talked about diversity and research for so long, and I would hope that through organizations like PEN and some of the other partner organizations that Advarra is working with to access community-based organizations and research site locations beyond just the existing research sites. Reaching out to the federally qualified health centers and other areas where people are receiving medical care and maybe could easily receive education about clinical research options as well, so I would love to see a significant improvement in diversity and inclusion.
The other thing I think that I hope to see more of is these decentralized clinical trial and agile modalities we’ve talked about. We have out of necessity, had to deploy those tactics and I think it has been a catalyst and accelerated the adoption of those modalities to again hopefully bring research options to a broader audience and bring these new life-saving therapies and drugs to market. So lots to look forward to we’ve got our work cut out for us but it’s been such a great conversation Robin I really appreciate your time and always learn so much whenever we talk so thank you again for joining our episode of “Advarra in Conversations With…”. Robin, thank you for joining us.
Robin Barnes (22:15): I greatly enjoyed connecting with you today. I also always learn so much from you, whenever we connect and I certainly look forward to the ways in which our organizations and our listeners can continue to align forces on behalf of patients and care partners, so thank you so much for hosting me today, it was a true pleasure.
Robann Cunningham (23:00): Absolutely anytime so that’s all for this week’s episode, thank you for listening, if you enjoyed today’s episode keep a lookout on Advarra’s social channels and on Advarra.com for our next episode and check out powerful patients.org. Thank you.