Originally posted on HIStalk on March 21, 2016.
Tell me about yourself and the company.
I am an oncology nurse by background. I am also an entrepreneur. Prior to starting Carevive, I had an accredited oncology continuing education business, where I worked with thousands of oncology professionals across the country who helped disseminate education to oncology clinicians.
About three years ago, I started Carevive. It is a healthcare information technology company where I am leveraging all those relationships of those experts nationwide who are helping me to develop both clinical workflow and patient engagement software, that interfaces with the enterprise electronic health records (EHRs). The primary deliverable of the software are patient care plans, treatment plans, symptom management care plans, and survivorship care plans, all intended to improve the clinical outcomes and quality of life of cancer patients.
Oncology emphasizes the importance of patient-reported symptoms and patient perception of well-being. Is that unusual compared to other medical areas?
Oncology has several uniquities. There are over 300 diseases within oncology, which in itself makes it a complicated disease. Then, of course, it is the big C. When you have cancer, it’s very important to balance survival and quality of life. Patient engagement and ensuring that patients are involved and educated about their disease, prognosis, and treatment is very, very important because it is a matter of life and death.
What are the most important characteristics of an oncologist who works with sophisticated technologies while managing the psychological aspects of a patient with cancer?
Being an oncologist is part scientist and part clergy. That relationship between an oncologist and his or her patient is the most sacred. Somebody puts his/her life into your hands. I feel the stress and the burden today of oncologists. The healthcare technology industry has not kept up with the rest of the world. Patients have access to all of this information, which may or may not be relevant.
The oncologist doesn’t have those tools — the clinical decision support, the data analytics tools — to be able to help that patient process that information. It’s a whole new world. There is some light at the end of the tunnel with changes in cancer care and value-based reimbursement. The healthcare IT market is mobilizing to better support oncologists, but it’s a struggle.
We’re beginning to accumulate a lot of electronic treatment data and outcomes data. Will that increasingly be used to evaluate the risks and benefits of treatments as well as their value?
Absolutely. As I mentioned, there are hundreds of diseases within oncology and very limited data sets. Everything is based on very small, clinical trials data. The NCCN guidelines are based on expert panel discussions, again, with very little evidence. You’re starting to see a number of companies that are trying to get real-world treatment practice pattern data and symptom experience data to better inform clinicians and patients moving forward — which they have never had before — to guide practices.
Do oncologists recommend or manage treatments for their patients the same way they would for themselves?
One of the important changes — a consistent quality measure — is the need for oncologists to document a patient’s goals of care prior to making a treatment decision. It seems so intuitive, but oftentimes those conversations weren’t being had. Making sure the patient understands whether his/her disease is curative or palliative. That conversation has to be documented, as well as documenting what the patient’s goals of treatment are. Those are two very important first steps in treatment planning.
Oncology drugs are among the most expensive. Does that create difficult decisions for the oncologist who has to balance their potential benefit with the fact that their cost could financially drain the patient?
There are some areas, some diseases, where there is a plethora of choices. The routes of administration are different. The costs are different. In terms of routes of administration, some are given orally, some are given intravenously. Some will require that the patient is frequently going to the clinic versus others where a patient can self-administer a drug. That’s an important consideration as are costs and toxicity profiles.
The perfect example is that some drugs can cause significant peripheral neuropathy in your fingertips. If you are a pianist or somebody whose profession requires them to work frequently with their hands, they probably would not be good candidates for that option. All those things come into play. The oncologist and his/her patient are very thoughtful about all of those risks and benefits when planning treatment.
What types of engagement do oncology patients want?
It goes back to that conversation that you and I had when we first started. There is this sacred relationship between the patient and the person that they are putting all of their faith in to save their life. There are meta-analyses of data that point to, as frequently as the care team can touch that patient and the patient can touch the care team, those patients having far better outcomes. There are a couple of examples of that.
There is a quality measure now that you have to screen all patients for distress. You’ve got to manage their distress, because distressed patients have poorer outcomes. You want to keep that relationship close. A big problem in cancer care is that because patients have such a will to live, sometimes they will push through a number of symptoms until those symptoms get really severe and not want to talk about them or report them because they want to maximize that therapy. Ensuring that there are mechanisms, be it technology or just simple care coordination, where you’re in active communication and dialog with patients. Part of what we do is the technology and part of it is workflow and coordination, making sure that there are those frequent touch points and follow through with the patient.
Number two is making sure that the patient is educated and realistic and doing all that he/she can to maximize the benefits of treatment.
A lot of talk recently, including from the White House, is about patients donating their genomic and EHR data to cancer researchers who are looking for patterns and ways to identify similar patients. Will that concept be difficult to explain to oncologists and individual patients?
As part of our license agreement, you have to discuss data rights. I’ve seen the oncology community be overwhelmingly positive so long as the spirit of the data collection is good and to move the science forward. You get buy-in from clinicians and patients because they’re hoping for this information. They know it will improve patient care.
Specifically what I’m referring to here, at least in our case, is when you’re collecting patient-reported data on the patient experience and being able to understand and compare quality of life on different regimens. Those are datasets that they don’t have right now. Those are important datasets when you’re talking about the risks, the benefits, and the value of treatments.
Does the simplistic idea of cancer as a single disease that can be cured via a cancer moonshot send the wrong message?
We have to be really careful. Today’s cancer moonshot … Several years ago, it was targeted therapies. Now it’s a little bit of immunotherapy. Just making sure that we are keeping it real. There have been incredible amounts of progress, but there is much, much, much more progress to be made. This concept of 2020 — that’s just a few years away. We owe it to patients to just set realistic expectations.
Do you have any final thoughts?
It’s very exciting to see resources being mobilized to our industry. I’ve been doing this a few years. Even seeing the small changes in the interoperability between EHRs and all of the interest that has gone into this market is exciting. I’m glad to be part of the journey.