Developing a Comprehensive System for Personalized Survivorship-Centered Care Plans

A Conversation With Amye J. Tevaarwerk, MD

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By 2040, the number of cancer survivors in the United States is expected to climb from 17 million today to 26.1 million, with most living 5 years or more after their diagnosis. However, many of these survivors will need ongoing monitoring for treatment-related side effects and cancer recurrence after treatment, as well as other health-care surveillance, which requires a coordination of care among multiple providers, including primary care providers, medical oncologists, and other cancer specialists. To improve coordination among the different care providers, in 2006, the Institute of Medicine (IOM) published its report, “From Cancer Patient to Cancer Survivor: Lost in Transition,” which offered 10 recommendations to improve follow-up cancer care and patient outcomes.1

Despite the IOM’s recommendations—and the recommendations from ASCO and other medical societies for the development of survivorship care plans—the adoption of individualized survivorship care plans to guide care decisions after cancer treatment ends has remained low. To address the barriers preventing the development and implementation of survivorship care plans, Amye J. Tevaarwerk, MD, Associate Professor in the Department of Medicine and Survivorship Program Director at the University of Wisconsin School of Medicine and Public Health, Madison, has focused her research—in addition to patient care—on developing the tools necessary to increase care coordination and communication between cancer survivors and health-care providers following active cancer treatment through the electronic health record (EHR) system.

“One of the beautiful aspects about the EHR or patient portal is that it allows patients to reach out to their providers between clinic visits in a more cost-effective and less burdensome way.”
— Amye J. Tevaarwerk, MD

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Dr. Tevaarwerk is working with electronic health record analysts and software engineers to develop health-care information technology to facilitate better survivorship care coordination. In an interview with The ASCO Post, Dr. Tevaarwerk discussed the progress made in the electronic health record to capture survivorship data and coordinate care after treatment of cancer, how the integration of oncology and engineering may lead to improved quality of survivorship care and clinical efficiency, and the challenges remaining to make survivorship care delivery a reality for more survivors.

Making Survivorship Care More Proactive

Your research focuses on developing tools that will increase patient care coordination and communication between survivors and their health-care providers, including using electronic health records to facilitate this communication. How would this be implemented? What information would an electronic health record have to have to enable this type of communication?

The evolution of electronic health records over the past couple of decades is enabling oncologists to capture data about their patients’ medical care and communicate with their patients through patient portals. It is also enabling patients to review information about their care, including the results from laboratory tests, imaging scans, and pathology reports. However, we haven’t thought about how to use these important tools more effectively, and what the pitfalls may be for patients, or how electronic health records may exacerbate health-care disparities based on age, digital literacy, and lack of access to the technology, either through a computer, mobile device, or high-speed Internet access.

What we are attempting to do through our research is not only describe what is currently happening with the technology available through electronic health records, but to better understand how to use those tools to integrate the pieces of patient data to make the cancer journey more proactive and less reactive for patients. One of the beautiful aspects about the EHR or patient portal is that it allows patients to reach out to their providers between clinic visits in a more cost-effective and less burdensome way.

Developing an EHR-Based Cancer Registry

You are working with EHR analysts and software designers to develop health-care technology. What types of technology are you developing, and how close is completion for survivorship health-care information technology for use in the clinic?

We have adopted an approach attempting to reuse tools that already exist rather than trying to develop completely new tools. For example, in the treatment of diabetes, there is a registry tool that has been created within the EHR to help primary care providers meet certain criteria in the management of their patients’ health. We have been attempting to take some of those same tools and use them to assess whether we have met all the requirements in our patients’ survivorship care to develop an EHR-based cancer registry. Such a registry would be capable of operating in real time to track desired care and prompting clinicians and survivors of needed testing outside of or in advance of visits.

“A lot of the infrastructure that is needed for the health management of cancer survivors is already in place; it just has to be repurposed.”
— Amye J. Tevaarwerk, MD

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Additionally, we’ve been looking at integrating patient-generated data. Some EHR vendors have already created ways to integrate data from Fitbit wearers into their patient portal accounts. In this way, clinicians could view that patient-generated health data regarding their physical activity level, the same way physicians monitor other patient-generated data such as blood glucose levels that flow into the EHR, which can be accessed between clinic visits. So, a lot of the infrastructure that is needed for the health management of cancer survivors is already in place; it just has to be repurposed.

One of our collaborators has an R01-funded clinical trial looking at using Fitbit data imported into the EHR to help breast and gynecologic cancer survivors increase their physical activity levels. This is an example of how we are repurposing EHR technologies in cancer survivorship.

Overcoming Barriers to Implementing Survivorship Care Plans

Is one of the problems with the utilization of an electronic survivorship care plan that not all members of a survivor’s health-care team may be able to access it? How can that barrier be overcome?

We recently published a study in which we interviewed primary care providers from a rural research network regarding survivorship care plan content, format, and layout as well as the potential use and clinical workflows around survivorship care plans. We targeted primary care providers practicing in rural communities because we thought they would be more likely to struggle with a fragmented health-care system, which may force cancer survivors to travel to different places to receive care.

Our idea was to design a survivorship care plan that could be pushed into survivors’ electronic health records. We quickly realized that, although it is technically possible to do that, the challenge is overcoming a lot of regulatory legal hurdles, so we had to refocus our efforts on having a paper product that could be faxed to different health-care systems.

Additionally, we found that although primary care clinicians valued the information contained in survivorship care plans, they had important recommendations regarding content, layout, and format.2 So, this is a persistent challenge we have to overcome.

Wouldn’t having a universal medical health record system for survivorship care plans reduce the amount of time health-care providers have to spend creating and maintaining the plan?

When the cancer community created survivorship care plan documents, we didn’t take into consideration how much downstream work there would be for health-care providers to use the tool and keep it updated. We created survivorship care plans at one point in time, and it was naive of us to assume they would be completely valid 5 years later; the field of oncology is not static, nor is a patient’s medical history. In addition, we didn’t consider how primary care physicians would be able to maintain survivorship care plans on top of all the other duties they have to perform, especially for older cancer survivors with multiple comorbidities.

As we heard from the primary care providers we interviewed for our study, accumulating patient data is an important step in the survivorship care process, but it may not be sufficient, and we must think about how else we can support these providers. It is one of the reasons we have turned our attention to messaging survivors with the steps they may need to take to maintain or update data contained in their survivorship care plan.

For example, patient portals maintain data useful for primary care providers regarding their patients’ general health, but they are not well developed for cancer survivorship care. Information flow is important, but so is clinical decision-making, and we have to explore who receives notification to schedule follow-up visits: is it the oncology team, the primary care physician, the survivor, or all of them? Also how do we track the information responsibility to prevent duplicative work?

Ensuring Coordinated Care

Many cancer survivors will need ongoing surveillance to monitor recurrences and the long-term effects of cancer and its treatment. But because survivorship care is not coordinated among various health-care providers, the responsibility often falls to survivors to coordinate and maintain their survivorship care. How can this situation be improved so coordination of care happens on a timely basis and the information included in the survivorship care plan is accurate and up to date?

Unfortunately, we do not have EHR tools or patient portal tools to indicate to survivors who has the responsibility to coordinate their care. There is not always a clearly assigned provider. This information might be in the survivorship care plan, but it may be difficult to readily see.

For some population of survivors, a prompt in their EHR to let them know there is a piece of their care that is outstanding may be sufficient to spur them into action. You can imagine that for an engaged, medically literate patient who sees a reminder about a routine mammography screening in her patient portal, that may be enough to get her to schedule an appointment. However, these electronic prompts won’t solve the problem for all survivors, because there are some who are never going to be able to access or be comfortable using this technology, and still others who will struggle to take the steps needed to schedule the mammogram even if they receive the prompt.

We have to figure out other ways of messaging these survivors, and we also have to overcome some of the interoperability issues with EHR systems, so all providers and survivors have access to survivorship care information. If patients’ primary care team is in the same system as their oncology team, that may help primary care providers to take on some of this responsibility.

At a minimum, shouldn’t survivors be presented with a document or instructions after treatment on how to track and maintain their care going forward?

We have been big proponents of survivorship care planning, which is implicit in the production of a survivorship care plan. But it’s tempting to view the survivorship care plan document as a sign that the care planning occurred.

A system like ours documents cancer diagnosis and treatment as structured data, at least for some cancers, and uses those structured data to rapidly develop a survivorship care plan document. With such a system, you can also imagine that as treatment is being completed, the structured data and clinical decision-making support are firing in the EHR to present to the oncologist or primary care provider detailing the follow-up plan post treatment. However, this all requires a lot of work to set up and maintain; it isn’t effortless.

“We must figure out how every health-care institution, clinician, and survivor can engage in real-time and dynamic management to deliver necessary survivorship care without overburdening survivor, oncology, and primary care resources.”
— Amye J. Tevaarwerk, MD

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Even if we can get that part implemented, we still have to deal with how to keep the survivor’s medical history updated over time. We talk about the end of treatment as being the time when survivors are given a care plan going forward. However, often, that is not the last time survivors see their oncologist. So, we must figure out how every health-care institution, clinician, and survivor can engage in real-time and dynamic management to deliver necessary, but not redundant or unneeded, survivorship care without overburdening survivor, oncology, and primary care resources.

We are not there yet, although I think we are making some progress.

DISCLOSURE: Dr. Tevaarwerk reported no conflicts of interest.


1. The National Academies of Sciences Engineering Medicine: From Cancer Patient to Cancer Survivor: Lost in Translation. Available at Accessed December 13, 2021.

2. Tevaarwerk AJ, Zhang X, Haine J, et al: Re-engineering survivorship care plans to support primary care needs and workflow: Results from an engineering, primary care and oncology collaborative for survivorship health (EPOCH). J Cancer Educ. April 26, 2021 (early release online).