In November 2019, Johnson & Johnson, in collaboration with ONS launched the Johnson & Johnson Nurses Innovate QuickFire Challenge in Oncology, the fourth in a series of nurse-led innovation challenges. This Challenge invited nurses around the world to submit their novel concepts, protocols, screenings, treatment approaches and device ideas with the potential to improve oncology care– including but not limited to prevention, early detection, treatment and care for cancer survivors.
This Oncology Nurses Month, we’re excited to announce that the awardees of this Challenge are Micah Skeens, PhD, RN, CPNP, Nurse Scientist and Nurse Practitioner at Nationwide Children's Hospital, and Janet Van Cleave, PhD, Assistant Professor at the New York University Rory Meyers College of Nursing.
The Johnson & Johnson Notes on Nursing team recently spoke with nurse innovators Micah and Janet to learn more about their innovative solutions and how being awarded the Johnson & Johnson Nurses Innovate QuickFire Challenge in Oncology can help them advance their solutions.
Micah Skeens, PhD, RN, CPNP, Nurse Scientist and Nurse Practitioner at Nationwide Children's Hospital in Columbus, Ohio, is leading a team to further develop a mobile application for capturing the entire symptom experience of children with cancer in an interactive and fun interface, enabling personalized interventions and care.
J&J: What are some of the challenges in pediatric oncology care that created the need for the app?
Micah: Pediatric cancer treatment can be a lengthy and dynamic process – and more than 40,000 children undergo treatment for cancer each year.[1] These kids are battling chronic illnesses and a myriad of symptoms that evolve over time and affect their quality of life. From experience, we know that kids often don’t share their true symptoms with their parents because they don’t want their parents to worry. We also know that these kids are incredibly resilient and might be experiencing pain and other symptoms without sharing it. Because of this, when parents and caregivers are relaying symptom information to clinicians, it often isn’t as accurate and consistent as it can be. It is very challenging for our parents to come to the clinic and feel like they aren’t fully able to report what symptoms their child might have experienced the week before.
My team and I know there is an incredible need for a child-centric tool that can accurately capture the timing and intensity of certain symptoms both on an ongoing basis and over time. In between clinic visits, we’re missing valuable symptom experiences. From a research standpoint, children and parents report symptoms using lengthy measures either with paper and pencil or on an iPad, but this is not information the clinician has, and definitely not data the clinician has in real time that can improve the child’s quality of life. To our knowledge, there really isn’t an app like ours out there that is tailored to pediatric oncology patients and can compile valuable patient data on the backend for clinical decision making and research.
J&J: What was the development process like from ideation to implementation?
Micah: The app started with Victoria (Vicki) von Sadovszky, PhD, RN, FAAN, a nurse scientist at our hospital. Vicki utilized symptom assessment science to help guide development. We know the most effective interventions happen when you consider a comprehensive view of the child’s physiological, psychological and situational factors. Wireframes, or visual concepts, of the app were created and tested with well children and they provided honest feedback on the language and avatars. As nurses developing an app, collaboration was key. Experts in our research and development and graphic design departments assisted with the development. Vicki and I began discussing her idea for an app that could help give pediatric oncology patients a voice and knew we had to bring it to life. We knew we needed to create something that could engage patients in a meaningful, nonthreatening way but also relate valuable information in real-time to the healthcare provider. We also knew we wanted something fun and digitally focused so it could be something our kids would be very comfortable using both on our hospital devices and their own devices. It’s been an incredible two-year multidisciplinary journey and most importantly, our kids, parents and staff love it. We’re excited to start testing the app with patients in our hospital and enhancing its features.
Victoria (Vicki) von Sadovszky, PhD, RN, FAAN
J&J: How did your experiences as nurses influence the development of the app?
Micah: One of the advantages of being a nurse, as well as a scientist, is the ability to wear multiple hats to see how this app could impact the lives of kids with cancer. Throughout development, we were able to leverage our insights and research experience to help inform how we could translate symptom input from patients into standardized measures in oncology. We also have many patients with cerebral palsy who are unable to speak, so based on Vicki’s experience working with these patients, she incorporated a facial tracking feature that can track eye movements that can help indicate symptoms, this will be very helpful in our brain tumor population for example. We know children with chronic illness don’t just suffer physically, so we made sure to incorporate an emotional wellbeing component as well.
J&J: How has the significance of your app evolved in the midst of the COVID-19 pandemic?
Micah: Before COVID-19 entered our communities, we were thinking of ways that we could connect with patients so they didn’t have to come to the hospital so often. With parents now especially nervous about bringing their children, many of whom are immunocompromised, into the clinic, the need for our app has taken on a whole new significance. If our app was in place now, it could be an invaluable tool that could help clinicians provide better care and patients communicate their symptoms from a distance. We look forward to our app playing a critical role in transforming remote patient care in the future.
J&J: What are your goals for the advancement of the app?
Micah: There are many ways we’d like to expand and grow the app. One of our major goals is to enable our app to download data into the electronic medical record so clinicians can access the patient data in real-time. We would love to add an element of gamification, as well as the ability to customize the app to each patient so when a symptom strikes and they go into the app to record it, it’s a more personalized experience. Also, there are over 375,000 adult survivors of children’s cancer in the United States.[2] Many don’t realize that cancer survivors still experience symptoms such as fatigue and anxiety, so I envision creating modules for the patient’s entire cancer journey. We’re grateful to have been awarded the Johnson & Johnson Nurses Innovate QuickFire Challenge in Oncology because it will help us get to these stages faster and help us execute our upcoming multi-site clinic pilots more quickly. We’ll learn more as we get it in the hands of kids battling cancer and we’re even considering hosting a contest with them to help name the app!
J&J: Do you have any advice or words of encouragement for nurses with innovative ideas of their own?
Micah: In the spirit of National Nurses Week and the Year of the Nurse, we sent an email to our staff with quotes from Florence Nightingale: “Were there none who were discontented with what they have, the world would never reach anything better” and “How very little can be done under the spirit of fear.” Almost 200 years later, and these words are still incredibly relevant today. Nurses often say we can do things better but don’t take the steps or have the resources to implement the idea. I would tell nurses to put their passion for patients at the center of why they should pursue their innovative idea and don’t be afraid to fail forward. Our innovative ideas can make a difference in the lives of the patients and families we are caring for.
Janet Van Cleave, PhD, Assistant Professor at the New York University (NYU) Rory Meyers College of Nursing, is the Principal Investigator for the Electronic Patient Visit Assessment (ePVA)© – a time-saving platform aiming to help a care team and patient communicate in real-time to surface oncology symptoms affecting treatment tolerance, enable the patient to complete cancer therapy on time and capture vital patient data to improve care delivery.
J&J: What was the inspiration behind Electronic Patient Visit Assessment (ePVA)©?
Janet: In the earlier part of my career, I worked as an oncology nurse practitioner at a VA hematology and oncology clinic and cared for many head and neck cancer patients undergoing radiation and chemotherapy. I saw first-hand the heavy symptom burden many of these patients face and have always carried this population with me throughout my career. This patient population experiences severe fatigue, mouth pain, difficulty swallowing, and in many cases, anxiety and depression. Because of this, it is often very difficult for patients to communicate symptoms they are experiencing.
Patients who are undergoing intense treatment for their cancer require aggressive monitoring of their symptoms before, during and after therapy to help them complete their treatment on time, increase their chance of survival, and prevent serious long-term effects. However, current methods for gathering patient symptom data are largely inefficient. Patients and their oncologists often use emails, phone calls and additional visits to address symptoms – a lengthy process that can create burdens for both patients and their providers, especially during this time of COVID-19. I knew there was an incredible need for a tool that could allow our oncology patients to report their symptoms remotely and in real-time to help improve quality of life for our patients and our team’s ability to deliver high quality patient care.
J&J: What was your development process like from ideation to implementation?
Janet: In 2015, I began to develop my idea for the ePVA. My team at The New York University Rory Meyers College of Nursing began the process by creating the Touch2Care platform to provide a flexible software environment for web-based apps. We collaborated with the Head and Neck Cancer Team at NYU Langone Health to build the ePVA, a web-based patient-reported symptom assessment, that could be easily downloaded on a handheld device or computer so patients could easily engage based on their comfort level. I researched key measures and key words to help develop a conceptual framework that focused on patients battling head and neck cancer. We developed a questionnaire tailored to their symptom experiences that takes about 5-10 minutes to complete. Once a patient submits the questionnaire, which is based on 21 categories of symptoms, their responses enter a secure data server at our College of Nursing and can be accessed by our team within minutes. We conducted qualitative interviews with patients to get their thoughts on our app and whether or not they favored certain questions. In doing this, we learned essential information about patients’ experience with their symptoms and the importance of health literacy. Some patients may not know what the important symptoms are to report to their oncologists. The ePVA can help patients to advocate for themselves.
It has taken us about a year and half to develop our app, and I’ve been honored to work with a passionate, multidisciplinary team throughout this process. I’ve been working with the NYU Langone Health’s head and neck cancer leadership, social workers, speech and swallow therapist, and nutritionists. I have partnered with Dr. Nadia Sultana and her students in the NYU Meyers Nursing Informatics program who helped to improve the app’s offerings and design. And the nurse practitioners and physician assistants especially have really championed this work.
Co-lead Nadia Sultana, DNP, MBA, RN-BC and entrepreneurial lead, Anthony J. Kostelnak, BS
J&J: What has the response been so far to ePVA in your hospital?
Janet: The response so far to ePVA has been wonderful. We have clinicians external to our health system requesting to implement it and patients have stopped me in the hallway to inquire if they could complete our questionnaire. The patients are taking the use of the ePVA very seriously because they feel like they can advocate for their needs in a new way. We knew when we were developing our app that it had to blend perfectly into the patient’s journey because if it impeded workflows, treatment or face-to-face time with clinicians, both patients and clinicians wouldn’t want to use it. We’re pleased to report we have a very high rate of patients who say they would want to complete the survey again and a high rate of clinicians who have utilized the reported information on the back end.
J&J: How has ePVA in your opinion taken on new significance in the face of the COVID-19 pandemic?
Janet: Before COVID-19, with more patients at the point of care, it was much easier for us to monitor symptoms. ePVA was designed to enhance the patient experience by offering them a remote way to share information with their clinicians, not to replace a face-to-face visit. As more patients are now remote, our solution has taken on new importance. ePVA is able to provide clinicians a more comprehensive overview of the patient remotely during a time when patients are going less frequently to the clinic for an in-person visit – which is key in order to deliver high-quality treatment. A member of my team, Anthony Kostelnak, is exploring the use of the ePVA to connect with patients in hospital rooms who are isolated because of COVID-19 infections.
J&J: What does being awarded the J&J Nurses Innovate QuickFire Challenge in Oncology mean for your potential solution?
Janet: My team and I are really thrilled. Our patients’ best shot at beating their cancer is making it through treatment. Johnson & Johnson represents the best in nursing and supporting nurses, and to receive an award like this is validation of the work we are doing and the importance of what we can do. With this award, we will be able to intensify our development of the web-based app and improve the ePVA software platform to expand its use of community-based oncology practices. There are many patients who are unable to come by the clinic on a regular basis, so we want to improve the app so it can handle more bandwidth, translate it into other languages, communicate with underserved populations, and integrate it with electronic medical records. We want to continue to conduct studies, test, learn and gather feedback from clinicians and patients. The mentoring offered from the Johnson & Johnson – JLABS ecosystem will also help us think through how we can translate and scale our solution to other oncology patients.
J&J: Do you have any advice or words of encouragement for nurses with innovative ideas of their own?
Janet: As a nurse, patient wellbeing is at the center of what we do. We are constantly evaluating and observing. We understand the clinical picture and the importance of well-integrated technology that is simple and elegant for patients. And, as nurses, we’re constantly asked to solve problems. So we’re constantly hacking to find innovative solutions that provide high quality care for our patients. I would tell nurses with ideas of their own to keep going. Don’t give up. If you are feeling lost, find a good team. I have been so lucky to have the exceptional and supportive team that I do. You don’t know what you don’t know, so collaborate with people in different areas such as clinical informatics, entrepreneurship and graphic design. And I would say the key to the success of an idea is making sure it is backed by research, so I recommend seeking out the data that can really highlight the need and the problem your idea is aiming to solve.
Being awarded the Johnson & Johnson Nurses Innovate QuickFire Challenge means nurse innovators Micah and Janet and their teams will gain access to funding and support with the aim to help move their innovations forward, including grant funding of $50,000 each, mentoring and training opportunities from the Johnson & Johnson Family of Companies, and access to the Johnson & Johnson Innovation—JLABS ecosystem, which helps innovators accelerate discovery and get operational support to bring their healthcare solutions to life.
Innovate with us! Learn more about the Johnson & Johnson Nurses Innovate QuickFire Challenge series and meet past awardees here and follow @JNJNursing on Facebook and Twitter to stay up-to-date on upcoming Challenge opportunities.
[1] CureSearch. (2019, November 12). Childhood Cancer Statistics: CureSearch. Retrieved from https://curesearch.org/Childhood-Cancer-Statistics
[2] CureSearch. (2019, November 12). Childhood Cancer Statistics: CureSearch. Retrieved from https://curesearch.org/Childhood-Cancer-Statistics
