The ASPECT Program has helped us to transition as an organization to be one that elevates the individuals themselves impacted by eye disease, those with vision loss, those who are our champions who wish to prevent vision loss.~Kira Baldonado
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Storytelling is a crucial element of advocacy, for it allows individuals to establish an emotional bond with their audience by recounting experiences and conveying messages in a compelling manner. It is an influential tool that can be employed to educate, inform, and inspire individuals to act on noteworthy issues. Through storytelling, advocates can proficiently communicate their message and garner support for their cause.
Today’s featured guests, Kira Baldonado, and Julie Grutzmacher of Prevent Blindness discuss how the ASPECT Program is bringing together those living with vision loss and prevention champions to broaden their storytelling skills. In the video and transcript that follows you’ll learn how the ASPECT Program is empowering its participants to bring about a positive transformation in the world. Enjoy! ~Steph
Beyond Sight Magazine Cover
Meeting Kira Baldonado & Julie Grutzmacher
Kira Baldonado: Hello, I’m Kira Baldonado, Vice President of Public Health and Policy at Prevent Blindness. I’ve been with the organization 20 years and I work to advance our mission based initiatives for programmatic outreach as well as our policy efforts nationally for the organization. I’m a white female in my 40s and have brown or shorter length hair and today I’m wearing a black shirt with an olive green coat.
Julie Grutzmacher: And I’m Julie Grutzmacher, I’m the Director of Patient Advocacy and Population Health Initiatives at Prevent Blindness. I’ve been here for three years, and I am a white female in my early 40s. I have long brown curly hair, and I am wearing a red blouse today.
So Kira, at the time that you came up with the idea for ASPECT, you had been working at Prevent Blindness for 17 years. What gap had you identified and were you seeking to fill with the ASPECT Program?
Filling The Gap
Kira Baldonado: So when the idea evolved, it was really a desire to address the gap of the appreciation for the contributions that individuals impacted by eye disease or those with vision loss could make to the development of new treatments to program design to policy development and how eye care could be better for everyone. Traditionally, I’ve seen that patients were engaged to participate along with experts and researchers in meetings, but they really didn’t seem to have the training or the guidance that they needed to help them understand what their role was at that meeting and what impact they could have. They needed to know that their voice was the most important one at the table.
So, with that, Julie, and you do a wonderful job leading the program, so what is the ASPECT Program for all of those in the audience, and what do you think makes that program unique? Really, highlighting the role that storytelling does.
Unique Attributes Of The ASPECT Program
Julie Grutzmacher: Sure, so, the ASPECT Program is an acronym, so Kira creatively came up with the, the title. It stands for Advocacy, Support, Perspective, Empowerment, Communication, and Training. So what that all means is that this is a program that aims to equip individuals with some sight loss and blindness as well as their allies. So that could be eye doctors. It could be public health professionals. It could be occupational therapists, et cetera, and equip everyone who participates in the program with skills and knowledge around advocacy.
So that can be everything from how to talk to your doctor and how to feel prepared when you go to the doctor’s office to advocate for yourself, but also maybe your family member who has an eye condition. Or it could be participating in legislative advocacy and working to advance various policies that make it easier to gain access to assistive devices that you need to stay fulfilled and productive at work, for example.
So the program really trains everyone who goes through it. It’s a 10 session series, in these skills. And we really focus on storytelling and that is one component that makes the program so unique is that we believe storytelling and developing skills around personal narrative is a really powerful impactful advocacy tool and that everybody stands to improve from working on honing your story.
We, all have many different stories. And for some who go through the program, it’s the first time they’ve really analyze what their story is and what they want to say and, what their advocacy goal is and then, for others, they’ve been advocating for a long time and they have a lot of experience, but they all come together and learn from each other.
And likewise, we bring together, the eye doctors and the patients in this educational series, and that is really truly unique where you have two hours of engaging in dialogue with each other. And what we know from graduates is that for the doctors who participate, it makes a real difference in, their career and in the way that they approach their care for their patients.
And it also it really is encouraging for the patients to have the eye doctors in class with them and to learn from them and learn about what their challenges are and to see them first as humans. And so it’s really a rich very interactive experience for all. And so I think those are some of the components that make the program so unique and impactful for everyone who goes through it.
Kira, from your perspective, how do you think that Prevent Blindness as an organization has benefited?
Prevent Blindness Benefits
Kira Baldonado: We’ve benefited greatly from the ASPECT Program, but really every wonderful individual that has gone through the program and graduated. Traditionally Prevent Blindness as an organization, which has been around a long time, we were founded in 1908. Really as a voice for individuals that didn’t have necessarily a voice at the table. But helping to illuminate some of the issues and policy and practice that was needed in the United States to improve eye care practice for everyone. So, we always saw ourselves as sort of the voice of the patient in these issues of policy and practice.
The ASPECT Program has helped us to transition as an organization to be one that elevates the individuals themselves impacted by eye disease, those with vision loss, those who are our champions who wish to prevent vision loss and really letting them be a guide for us to better understand what’s important for these individuals and providing ways for them to, make an impact. So we’ve gone from being that voice of the people to be guided by individuals and creating opportunities.
Some of the ways as an organization we’ve done so is to make sure that we integrate the perspective of the patient, the care providers into everything that we do as an organization. From our, resource development, our work, our presentation, our policy efforts. First we think about and, and ask the individuals, what’s important for you? How can we shape this resource, this policy to be meaningful to you and then together working to, make them a reality. We really hope to serve as an example for other organizations, other companies, of the way that patients and care providers can be involved in the work and to make it better more usable in the end when it’s all done.
And really as an organization the ASPECT Program participants have helped direct us to issues that maybe we were aware of of or had not yet elevated to, issues that are important for these individuals living with an eye disease, or that the care providers that are supporting them. Issues such as vision loss and mental wellness. How to improve access to health care, or even eye care for individuals with visual loss and to better understand the impact of social determinants of health. You know, what’s the transportation, what’s the access, the coverage, the, the cultural beliefs. And to better understand their impact on how somebody is able to maintain vision health, or their individual’s ability to access eye care.
So, we’re growing as an organization because of the, involvement of the ASPECT graduates in our work and becoming better. So, they’re doing a lot for us. So, Julie, you had the opportunity to work with these individuals almost on a daily basis in your leadership of the program. So what have you seen as some of the examples of how ASPECT alumni have used their training that they’ve gotten from you and your leadership and what have they gone on to do?
Alumni Moving Onward & Upward
Julie Grutzmacher: So they have done so many things since since graduating and going through the program. Some examples include a parent of a child with retinopathy of prematurity joined an FDA advisory committee to share her journey. There have been several graduates who have participated in congressional briefings talking about their own eye condition, be that glaucoma or AMD or thyroid eye disease. And they’ve shared the impact of, living with those conditions on their lives.
Many graduates have participated in focus groups with researchers and funders to let them know where they believe the funding should be allocated. Several have joined pharmaceutical advisory boards. To inform them of what is helpful for them as far as treatment regimes and, various fact sheets, et cetera.
Several have given feedback to software engineers regarding digital accessibility and one example being an accessible election guide for, for voting purposes. And then I’ve worked with several graduates on developing mental health modules as well geared towards mental health providers and counseling those who have some sight loss and blindness.
So those are just a few examples of what they’ve gone on to do, but they have also joined our staff meetings and informed our national staff on what their journey has been, what they’ve been doing since they graduated the program. They continue to join the ASPECT meetings to inform the current participants what they’ve gone on to do and, and how, it’s been impactful for them. some of them have become trained in some additional legislative advocacy skills and become team leaders for our annual advocacy day called Eyes on Capitol Hill, where they lead a group of advocates in meeting with members of Congress. And so they gained some really great leadership skills and legislative advocacy skills through doing that.
So just a few examples of what they’ve gone on to do. So Kira, this really is a great program. If people are interested in joining, where can they go to learn more?
Learning More About The ASPECT Program
Kira Baldonado: Yes, definitely. We would love to hear from anybody interested in joining the program. So you can reach out to the program via the website. So go to the Prevent Blindness website at preventblindness.org. And you can search ASPECT in the search bar to find it fastest. And then once you get to the ASPECT page, there is an apply to join ASPECT button. So you can fill out an application to join the program at any time.
And then we coordinate two cohorts of individuals for the program each year. So if you miss the first cohort, we’ll, definitely reach out to you for that next cohort. So apply anytime and we’ll be happy to reach out to you.
If the internet is not the easiest route for you, you can always call Prevent Blindness 1-800-331-2020. And ask to talk to somebody about joining the ASPECT Program and we’ll be happy to chat with you on the phone as well. But reach out to us either way, the website preventblindness.org or via our 800 number 1-800-331-2020. But we would love to talk to anybody about the ASPECT Program.
Julie Grutzmacher: Thank you. And thank you all so much for listening. We really appreciate the opportunity to talk about the ASPECT Program here at Prevent Blindness.
Kira Baldonado: Thanks all.
Kira & Julie’s Bios
Kira Baldonado, MPH
Kira is the Vice President of Public Health and Policy for Prevent Blindness- responsible for the mission-based work of the organization, focusing on program outreach, education, and policy directives. Kira, and her team are working to improve our nation’s vision and eye health system by leading consensus-driven initiatives, creating accountability and improved surveillance for vision, while promoting equity and patient-engagement in each step of the continuum of vision care. She has overseen the successful launch of the ASPECT Patient Engagement Program- an advocate training program for patients and allies; the Center for Vision and Population Health at Prevent Blindness; and led the National Center for Children’s Vision and Eye Health (NCCVEH) at Prevent Blindness until 2018. Kira was named as One of the Most Influential Women in Optical for 2023 by VisionMonday and recently joined the Society of Leadership Fellows at St George’s House, Windsor Castle as an International Fellow.
Julie Grutzmacher, MSW, MPH
Julie holds a dual master’s degree in social work and public Health and has more than twenty years’ experience advocating for equitable access to and delivery of healthcare services. Her work has led her to academic medical facilities, federally qualified health centers, academia, and non-profit organizations, servicing communities impacted by HIV/AIDS, premature and low birth weight babies, and high-risk pregnancies. She has experience building, implementing, and evaluating educational training programs from scratch- first in academia with medical residents and then at Prevent Blindness with the ASPECT Program for those who are visually impaired and blind and their allies. She currently serves as the Director of Patient Advocacy and Population Health Initiatives at Prevent Blindness.
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- The header, Beyond Sight Magazine Cover, and YouTube Thumbnail are identical headshots of Julie and Kira are side by side. Text on the cover reads “Beyond Sight September 2023 | Cane EnAbled | ulie Grutzmacher and Kira Baldonado “
- The video is in speaker view and switches between Kira and Julie.
- Prevent Blindness logo includes text “Prevent Blindness ASPECT Patient Engagement Program”