Supporting patients with serious illness
Today we are Interviewing Arif Kamal, MD, MHA, MBA, Associate Professor of Medicine, Member of Duke Cancer Institute. Arif is a leader in the creative use of technology to support patients battling cancer and other serious illnesses. He's also on a mission to make palliative care accessible and beneficial for patients and families.
Interview conducted by Katie D. McMillan
Tell us a little bit about yourself.
I am a medical oncologist and palliative care physician with a research focus on improving the experience of patients with serious illness and their caregivers using novel methods. The diagnosis of a serious illness, which can be anything from an incurable but chronic condition (e.g. renal disease) to one that is life-threatening (e.g. advanced cancer), is a life-altering experience. What excites me is the enormous potential for technology-enabled methods, such as web-based tools, sensors, and monitoring mechanisms, to improve those patients’ quality of life. This provides equal attention to supporting the person – and his/her thoughts, motivations, and preferences – while also focusing on treating or curing the illness. Within our existing tools, we are particularly focused on using tools to drive engagement, both with patients and their caregivers but also at the clinician and system level.
What motivates or inspires your work?
We are inspired by how other industries address challenges in engaging consumers. For example, one of our team members recently discussed a common scenario to many – buying a home. We discussed how potential homebuyers approach this important task, and how often we lean on the wisdom and advice of others (e.g. family members, friends) to help make decisions. Importantly, we do not necessarily ask others for answers. But if we are about to meet with a mortgage lender, we ask those more knowledgeable, experienced, and wiser than ourselves – “What questions should I be asking?” Borrowing from this line of thinking outside of healthcare, we have challenged ourselves with the question – “How best can be ready persons for a journey with a serious illness?”
What apps or software have you been involved in creating?
- PCforME – This is a web-based tool to introduce patients to palliative care and prepare them for an upcoming appointment. We have used this in a randomized, controlled trial at Duke, have partnered with the Duke Population Health Management Office to use it in our ACO, and in small pilots across the country.
- ELOS – ELOS stands for “Extra Layer of Support”. It is a web-based tool that aims to engage patients newly-diagnosed with advanced cancer in supportive care options available to them in the cancer center. We are performing a prospective, cohort study at Duke and UNC to evaluate its feasibility among patients with GU, Thoracic, and GI patients.
- Prepped – Prepped is a native app available in the iTunes and Google Play stores as a free download which aims to ready patients with cancer, COPD, or seeking palliative care to prepare for an upcoming appointment. We use a novel algorithm to match patients with the right questions for them to ask their clinicians. We also use crowdsourcing methods to help users understand what others like them find meaningful questions to ask during an upcoming visit.
- BiteSizeQI – This is a healthcare workforce-facing web-based tool which aims to teach healthcare quality improvement principles in bite size portions. More information can be found in the interview with my colleague, Jon Nicolla.
Have you commercialized any of these products?
We are on our way. We have been working closely with Duke OLV, the Entrepreneur-in-Residence Program, and Duke Innovation and Entrepreneurship to think about entering the market in a thoughtful and dynamic way. We believe that idea of impact does not end when results of its study are published; dissemination is needed to change the world.
What are some of your lessons learned from going through the app development process that you’d like to share with other Duke innovators?
We’re learned some important lessons along the way. First, is challenging yourself to think outside the usual academic framework. We have found that grants are not always the best funding mechanism, clinical trials are not always the best way to test interventions, and publications are not always the best way to disseminate results. Second, make sure to step outside your comfort zone in terms of receiving mentorship and advice. We have gained tremendously from speaking with advisors outside our department, outside the school of medicine, and even outside of healthcare. There are extraordinarily collaborative folks across the campus and across the Triangle. Many of us are after the same thing – improving the patient experience – and have unique skills, experiences, and perspectives to get there.
I’m happy to connect with persons who want to learn more about our work at firstname.lastname@example.org