Strengthening Bonds in Cancer Care
Carevive, a cancer care management and patient engagement platform that provides patients, cancer care teams, and life sciences companies with access to data and insights to improve the quality of care, was founded in 2013 by Penn Nursing graduates Carrie Tompkins Stricker PHD RN AOCN® and Madelyn Trupkin Herzfeld RN BSN OCN®. It is headquartered in North Miami, Florida and employs a staff of fifty.
Recently, Penn Nursing got on the phone with Carrie and Maddy for a far-reaching conversation about innovations in cancer patient care management, Carevive’s niche and, of course, the Penn Nursing connection. What follows is a condensed version of that talk.
Penn Nursing: What’s the story behind Carevive’s founding and what role did Penn Nursing play?
Carrie: Maddy and I didn’t meet at Penn. After completing my Master’s degree I began a clinical practice at Abramson Cancer Center, then went on to conduct research and graduated from Penn Nursing with my PhD in 2007. While I was doing that, Maddy was founding her first company. Maddy needed expert advice on a breast cancer project and reached out to Dr. Linda Aiken, a professor we both knew.
She said, “You have to talk to Carrie!” For a decade, I served as an expert advisor to Maddy and her company. After Maddy sold her first company, we started talking in 2011 about the next best idea. One of the things I love about cofounding this business is that we came from different paths at Penn Nursing. Maddy did her undergraduate in nursing and business [earning dual degrees from Wharton and Nursing]. We had different arcs in our careers, and then came together around a disruptive technology. Penn Nursing gave us that critical foundation of knowledge and education that enabled us to work together from two different perspectives.
PN: What does the platform look like? How does it differ from old-school models of cancer patient care?
Maddy: The Carevive platform has been designed with the end-user in mind, and as such has a different look and feel for the patient, the cancer care team, and administrators. If you’re a clinician, you see a dashboard that summarizes both patient-reported and clinical data that is just what you need to make patient-centered care decisions. For example, we display how fit or frail the patient is to help inform decisions about how aggressive therapy could be. Another tool looks at patient preferences and how this informs choice among evidence-based treatment options. For patients, there are electronic survey tools for them to complete: What does the patient want? What are their goals for care? Does the patient know if treatment is curative or palliative? We ask patients very targeted questions that show up on the clinician’s dashboard. The patient’s voice is absent from the old-school model. Patients may assume the goal is to be cured when in some instances, that’s not possible. Clinicians may assume the patient wants the most aggressive care possible, but not all patients do. Some will value quality of life more than the treatments that may have high cost or high toxicity. [With Carevive] the clinicians see that data, and we know that they use the data in their decision-making process, and the patients leave with an electronic and/or hard copy of an individualized [Carevive] treatment care plan for them and their families. Then, if their cancer is not metastatic, they get a survivorship plan when their treatment is finished, which guides the patient as they transition back to primary care.
Where we know we are going to be the most innovative is in cancer symptom management. Patients may be on a regimen that could result in 60-70 side effects. There is currently no systematic way for clinicians to proactively assess and manage them. In fact, recent research shows clinicians are unaware of 50 percent of patient symptoms. At Carevive, we are working to enable cancer teams to systematically and proactively identify and manage patient-reported symptoms. These data then enable us to provide insights on real-world cancer patient experiences at a population level to enable providers to improve care delivery, and life science companies to inform drug development.
Carrie: I agree. The core difference that Carevive enables is systematic integration of the patient voice into care and decision-making processes across the cancer continuum, from diagnosis, through treatment, all the way to survivorship and end-of-life. There was previously never a systematic way for clinicians to capture this information in a way that would be scalable in their busy clinics. We apply science and best practices to ensure this is done in an evidence-based and scalable way, and then give patients the tools, care plans for example, to be active partners in their own care.
PN: What’s the biggest barrier to cancer patient care that Carevive innovates to overcome?
Quite frankly, time. Clinicians often don’t have the time in these busy clinics, with all the administrative requirements, to go as deep, to listen as long, as what they wish. So we help them focus right in on what’s important to the patient at that point in care by systematizing what patients are directly asked, which, as Maddy said, enables more honest insights. Also, clinicians may not be able to keep up with all the knowledge of what are the right questions to ask; for example, as new treatment side effect profiles emerge. We make sure clinicians get the information needed to provide the most proactive, patient-centered care that improves clinical outcomes, without more clinician burden.
PN: What’s an example of how Carevive innovates with survivorship care planning?
Carrie: In 2012, the American College of Surgeons Commission on Cancer (CoC) mandated giving a survivorship care plan to every patient who received curative treatment—a roadmap for the path ahead. What does follow-up look like? What are your resources? How can you prevent and deal with lasting side effects? This came out of an IOM [Institute of Medicine] report focusing on survivorship. At Penn we were implementing this into practice—and Maddy and I started talking about innovating the approach to survivorship care plan delivery. What led to Carevive was that we recognized together that integrating the patient voice into survivorship plan delivery was a key innovation that no one was focusing on at the time, nor one that the CoC required. We quickly saw the value of doing this across the whole cancer journey.
PN: The Carevive website mentions Maddy’s very personal connection to cancer.
Maddy: I remember when I first started the business a physician said to me, “A piece of paper doesn’t really change anything.” That’s true. It doesn’t change the odds. But we enable clinicians to know their patients better. There’s nothing more sacred than the relationship between an oncology team and a patient. So we will do anything to protect and strengthen that provider/patient partnership that leads to improved outcomes.
PN: On the Carevive web site, Carrie’s bio says to ask her about the Carevive Diary.
Carrie: [Laughing.] I thought I worked hard when I was working full time and getting my PhD. There is no comparison to how hard you work at a startup, and how flexible you have to be! And you have to laugh, you have to be able to look at yourself—and yourselves as a team—and go “Oh my God! How could I do that?” [The Carevive Diary features posts such as] a text from my husband: “Did you mean to throw your PJ’s in the toilet?” after I dashed out of the house for an important meeting, or this email about care plan content: “OK, constipation is now in your box and after speaking with Drace I believe you have everything but diarrhea,” and discovering a deadline extension on submitting a $1.5 million grant to the National Cancer Institute—I have a picture of grown men on the team hugging one another. It’s the highs and lows and craziness of running a startup. Keeping morale high and keeping humor on the table is so vital in this environment.