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)

Abstract

Intro:

Maintaining the health of survivors requires communication, collaboration and care coordination between oncology and primary care. Primary care clinicians have been acknowledged as important recipients of survivorship care plans (SCPs); however, current SCP templates have not been evaluated for usefulness in the primary care context.

Purpose:

We surveyed and interviewed primary care clinicians from a rural research network regarding SCP content, format and layout (phase 1), and potential use and clinical workflows around SCPs (phase 2). Based on these data, an existing SCP template was iteratively redesigned to better support survivorship care in the primary care setting.

Results:

A total of 13 clinicians (9 MDs, 4 APPs) participated. Interviewees advocated for maintaining a single SCP document shared by survivors and clinicians. Changes to the SCP template included prioritizing follow-up over summary of treatment, and removing or down-playing screening recommendations not impacted by cancer or cancer treatment. The re-engineered SCP was regarded as highly relevant for survivors, but clinicians noted the significant effort to “disassemble” SCPs in order to enter the information into on the receiving health record.

Conclusion:

Primary care clinicians value the information in SCPs, but had important recommendations regarding content, layout and format. Additionally, a significant effort appears to be required by recipients in order to extract SCP information for future use.

INTRODUCTION

The population of US cancer survivors will exceed 18 million by 2022.^1,2 Maintaining the health of survivors requires communication, collaboration and care coordination between oncology and primary care providers to manage follow-up and subsequent complications.³ Survivors also need to participate in routine health maintenance. Insufficient communication, collaboration and care coordination between oncology and primary care can result in failures to provide necessary care as well as lead to the provision of unnecessary and/or harmful care (e.g., getting scans that do not improve survival but expose survivors to copays, anxiety waiting for results, or extra radiation).⁴ Primary care clinicians report that current communication and coordination with oncologists is generally not adequate, but that they are interested and willing to provide survivorship care.⁵ They indicate a desire for detailed survivorship care plans (SCPs) to guide this survivorship care.^3,6 However, current SCPs have been designed with relatively less attention to use by primary care end-users compared with survivors.^7,8

To yield benefit, SCPs should be designed to support the needs of all targeted end-users, whether survivors or clinicians.⁹ Without these attributes, SCPs are unlikely to improve communication, collaboration and care coordination and, consequently, unlikely to improve health outcomes. Primary care clinicians have been acknowledged as important recipients and users of SCPs.⁸ Adequate communication with primary care may be especially important in populations where survivors face greater challenges accessing oncology specialty care or services. Survivors residing in rural areas, for example, may struggle to access specialty services because of factors such as geographic barriers, provider shortages, and lower health literacy.^10,11 Rural survivors typically have fragmented care (e.g. surgery may happen at our cancer center, but chemotherapy and radiation are much less likely) and they are the most likely to have some if not all of their followup care done locally (by primary care or ordered locally by oncologists). Thus, we targeted the primary care clinicians for this population to ensure that we did not worsen these disparities.

The Engineering, Primary care and Oncology Collaborative for Survivorship Health (EPOCH) formed at the University of Wisconsin (UW) to address ongoing survivorship health needs, such as improvements in SCP design and provision.^12–14 In prior research, primary care clinicians have identified the electronic health record (EHR) as the preferred method of receiving SCPs.^15,16 This finding is not unexpected given the expanding role of EHRs as a central source of diagnostic and treatment data, not only for survivors but in general clinical practice.⁹ Our prior research also suggested that clinicians might benefit from increased tailoring of the information presented in SCPs to better support SCP use in primary care settings.^12,16

EPOCH’s work includes incorporating the unique perspectives of primary care clinicians to help optimize the care of cancer survivors. Our study objective was to design SCPs that better supports use in the primary care setting. To accomplish this, we interviewed primary care clinicians to determine their information needs and preferences with regards to SCP content, format and layout. These data informed mock-up SCPs that were utilized in scenario-based interviews that assessed potential use in clinical practice to better understand the impact of SCPs on primary care workflows. The results of these interviews are presented along with primary care provider-centered SCP design considerations.

METHODS

Design.

This manuscript addresses the first two phases of a multi-phase project conducted at the UW (see Figure 1). These two phases had similar approaches but different objectives. In Phase 1, we conducted surveys followed by interviews with primary care clinicians with the objective of identifying changes in SCP content, format and layout supporting use in the primary care setting. In Phase 2, we conducted surveys followed by scenario-based interviews with additional primary care clinicians with the objective of understanding potential use and clinical workflows around SCPs. Following completion of both phases, final design requirements for SCPs were developed. The project was exempted from UW institutional research board (IRB) review. The research team consisted of an engineer, primary care physicians and oncologist, survivor advocates and informaticists.

Figure 1:

Study Activities and Inter-relatedness with respect to Phase 1 and Phase 2 Data Collection

EHR-based Care Planning.

UW Health includes the UW Carbone Cancer Center (UWCCC), an NCI-designated comprehensive cancer center providing SCPs to cancer survivors treated with curative-intent.^17,18 The UWCCC and UW-affiliate community sites leverage the EHR (Epic Systems, Verona, WI), in generating SCPs for curatively-treated survivors.^18,19 The UWCCC’s existing EHR-based SCP template was the starting point for developing our primary care-centered, re-engineered SCP.

Participants.

We recruited from a primary care practice-based research network (PBRN) with 80-member clinics from 37 health systems distributed throughout Wisconsin. This PBRN and the Collaborative have previously engaged in cancer survivorship research.^16,20 Members were informed of the research opportunity through a monthly PBRN newsletter and outreach by the PBRN Director. PBRN primary care physicians and advanced practice providers (APPs) were recruited to ensure a diverse group of clinicians based on years in practice, gender, and degree (MD, DO, Nurse Practitioner [NP], or Physician Assistant [PA]). An emphasis was placed on those working in rural practices, given the likely increased importance of SCPs for rural survivors where primary care clinicians manage survivorship across geography and healthcare systems.²⁰ Research coordinators worked with interested clinicians to thoroughly explain the study processes and subsequently distributed surveys and sample SCPs. The coordinators collected contact information and coordinated the surveys and interviews.

Surveys & Interviews.

Two semi-structured interview guides were developed by the research team. The Phase I guide was informed by the results of 3 prior surveys involving the PBRN and/or UW primary care clinicians.^12,14,16 It emphasized potential content, format and layout changes to SCPs. The Phase 2 scenario-based interview guide was informed by Phase I results and an engineering work system model employed in prior survivorship care delivery research.⁹ It emphasized how SCPs would be transmitted, received and used in clinical practice. It included discussion of four clinical scenarios for a visit to the primary care practice: (1) survivor known to the practice being seen in follow-up at the end of cancer treatment; (2) survivor being seen in follow-up with issues potentially related to cancer; (3) survivor being seen in follow-up with no concerns related to cancer; and (4) a survivor being seen as a new patient to the practice.

A survey previously developed by the team inquired about each interviewee’s preferences for potential SCP elements using a multiple-choice Likert scale.¹⁴ All interviewees received this survey electronically in advance of the interviews to facilitate the interviews and to ensure review of sample SCPs. Phase 2 interviewees were also asked questions about information in the template to solicit feedback on overall usefulness of the re-engineered SCP. Interviews (90 minutes each) were conducted remotely to facilitate flexibility with timing and location. AdobeConnect™ facilitated mutual review of templates and potential variants by the interviewees and interviewers. All interviews were conducted by a physician and an engineer dyad, using an interview guide. Supplemental Material 1 contains the interview guides and surveys, and the original mock-up used for the first interviews. Participants were re-imbursed for their time.

Data Collection & Analysis.

Simple descriptive statistics were calculated for each survey and reviewed by the research team in advance of each interview. All interviews were audio-recorded and transcribed, and handwritten interviewer notes were taken. The research team used these data (surveys, interview notes, transcripts) to identify changes to content, layout and format in both Phases. Team discussion regarding changes occurred until consensus was achieved. Interviews for both Phases stopped when data saturation was achieved (e.g. when no substantive new changes to the template were identified).

Iterative Design Process.

As illustrated in Figure 1, the team met collectively during each Phase to discuss data (survey results, transcripts, revised SCPs, collated notes, etc) and review proposed changes. This iterative design-evaluation process is a user-centered engineering method recommended by Agency for Healthcare Research and Quality, National Academy of Medicine and National Institutes of Standards and Technology for IT development and evaluation.^21–25 Starting from the initial EHR-based templates in use at UW Health, the team derived the re-engineered SCP by adding or removing content, while adjusting format and layout based on the interviews. Detailed notes were kept regarding contemplated changes to the template: desired changes were identified and incorporated; technically unfeasible changes were tabulated.

Final Design Requirements.

A sample SCP or “mock-up” was used for the first interview; changes were made iteratively with each interview. After Phase 2, the final mock-up was used to inform (1) a final EHR-based SCP template, and (2) design requirements. An EHR analyst assisted by a physician informaticist and engineer with health IT and informatics expertise were responsible for reviewing and building the final re-engineered SCP template and developing generalizable design requirements.

RESULTS

Demographics.

We conducted 13 interviews (8 in Phase 1, 5 in Phase 2), all interviewees completed a survey prior to the interview. In Phase 1, the eight clinician interviewees (6 MDs, 2 APPs) practiced at seven clinics (6 rural/small town; 1 urban). For Phase 2, the five clinician interviewees (3 MDs, 2 APPs) practiced at five clinics (4 rural/small town; 1 urban). Interviewees had been in practice for an average of 22 years (range 1–40) and all were using an EHR. Some (n=5, 38%) used the same vendor as the UW and had access to our records through health information exchange (HIE) such as CareEverywhere™. Only 5 (38%) reported accessing UW records via the HIE, although all indicated being aware of this option. All interviewees reported general unfamiliarity with survivorship SCPs; less than half (n=5, 38%) reported ever seeing one.

Phase I: Survey and Interview Results.

Figure 2a–c summarizes survey results regarding interviewee preferences for potential elements in a SCP on a 6-point scale (very useful, somewhat useful, neutral, not very useful, not at all useful, don’t include). Overall, interviewees (n=8) considered recommended cancer-related screening, preventative screening impacted by cancer/treatment, and timeline for recurrence risk to be clinically “very useful” for a SCP. Additionally, a series of elements were considered by all to be “somewhat” or “very useful”, including intent of treatment, diagnosis/cancer work up/staging, surgery results, targeted therapies, genetics, chronic treatment effects, and risk of recurrence. By contrast, preventative screening not impacted by cancer/treatment, insurance resources, and information of recommendations for healthy behaviors were rated by more clinicians as “neutral” or “not useful”.

Figure 2a:

Clinician Preferences about Potential Elements in a Survivorship Care Plan among Phase 1 Interviewees (N=8)

Figure 2c:

Clinician opinions about Survivorship Care Plan among Phase 2 Interviewees (N=5)

Changes made to the template are summarized in Table 1. Interviewees were asked about the option of one SCP for both survivors and themselves vs two SCP documents (one survivor-focused and the other clinician-focused). Interviewees were strongly opposed to two documents and felt that such an approach would increase their workload. This is exemplified by “I felt like all the other information that I wanted to know was really on there…I think that it might be a waste of time to make two separate documents.” With team consensus, we focused on redesigning the existing template to produce one SCP that better addressed primary care needs, while still providing that same document to survivors.

Table 1:

Description of Changes Requested by Primary Care Clinicians Over Phase 1 and 2

Phase	Type	Description
Addressed
1	Format	Recommend against producing two care plans; one SCP that covers needs of both survivor and clinician
1	Format	Moved location of contact information to front
1	Content	Added “table of contents”
1	Layout	Moved information from Treatment Summary to “cover page”
1	Layout	Moved up location of recommendations on follow-up, etc; conversely, Treatment Summary moved back
1	Format & Layout	Separated Recommended follow-up into visits/imaging/labs SPECIFICALLY for cancer and created SEPARATE section for Health Maintenance Impacted by Cancer
1	Format	Changed Year 1, 2, etc to Year dates (2018, 2019, etc)
1	Content	Removed information about HM not impacted by cancer or cancer treatment, with the exception of immunizations which were given increased prominence
1	Layout	Moved Genetics language to Health Maintenance Section, given increased prominence
2	Format	Added labels specifically stating RECOMMENDED, etc.
2	Format	Added labels to each header section “patient” vs “clinician & patient”
2	Format	Simplification of diagnostic information on “cover page”
Not able to address
	Layout	Pagination Support
	Content	Providing direct link to supporting documentation (e.g. summary of pathology linked to actual pathology report)
	Content	Assignment of roles and responsibilities
	Content	Hyperlinks difficult to include in possible faxed document

Interviewees strongly preferred headers for each major section. They wanted the document and all sections labeled with the survivor’s name and “Survivorship Care Plan.” Additional changes included (1) adding a “date created” immediately below headers, enabling clinicians to rapidly determine potential outdatedness; (2) clearly labeling the cancer diagnosis as early as possible; (3) moving abbreviated clinical contact information to the front, along with specific provider-to-provider communication information, and (4) adding a “Summary of Contents” section. Interviewees gave conflicting advice about the “Summary” section. Although they all believed that it would be valuable for others reviewing the document (e.g., survivors, other clinicians), interviewees did not necessarily report that they personally wanted this information: “I think the summary of the survivorship care plan contents is not as… important.” This change was reviewed multiple times by the team; final consensus included keeping a simplified version that outlined each major section.

Interviewees consistently noted the importance of recommended follow-up visits and testing, followed by the impact of cancer and cancer-related treatment(s) on health maintenance issues that were distinct from those of the general population. They recognized the value of the Treatment Summary section, but considered this section less important. Content dealing with future or chronic side effects were viewed favorably, but lifestyle, psychosocial resources and a glossary of terms were viewed as less helpful. Interviewees consistently emphasized a significant need for vaccination recommendations and discussion of any genetic testing, driven partly by caring for co-survivors: “being in a more rural community, we do care for a lot of families” and “that’s something that we’re really coming across more often in a primary care standpoint is, hey, do I need genetic testing or does my family members?” Finally, interviewees endorsed specifically stating “not recommended” for unnecessary screening: “It helps to validate why I wouldn’t do something.”

SCP content related to health maintenance not impacted by cancer or cancer treatment received negative reactions. For instance, “those guidelines change all the time, and … I don’t want you telling me when I need to screen my patients for different primary care things.” Interviewees also suggested increased emphasis on eventual care transition and referencing the primary care role in managing non-cancer related needs, with a desire that only a single clinician be responsible for completion of each recommended element at each phase.

Phase 2: Survey and Scenario-based Interviews.

Figure 2b summarizes Phase 2 survey results regarding interviewee preferences for potential elements in a SCP on a 6-point scale (very useful, somewhat useful, neutral, not very useful, not at all useful, don’t include); these results were consistent with Phase 1 findings Additionally, Phase 2 interviewees (n=5) were surveyed on a near-final re-engineered SCP included with the survey (Figure 2c). This survey was designed to assess the need to add or remove information, as well as overall satisfaction (5-point Likert scale). Interviewees (n=5) strongly agreed that the SCP would help them provide better follow-up care. Most (n=4) strongly or moderately agreed that they were satisfied with the SCP, and deemed SCP information clearly written, easy to understand, and easy to find. In Phase 2, we conducted scenario-based interviews to understand potential use and clinical workflow issues for the re-engineered SCP. The intent was to ensure that the new content, layout and format supported primary care use. Clinicians felt that the re-engineered SCP would be very useful for scenarios 1, 2 and 4 but less useful for scenario 3.

Figure 2b:

Clinician Preferences about Potential Elements in a Survivorship Care Plan among Phase 2 Interviewees (N=5)

A persistent theme of both Phase 1 and 2 interviews was the effort to “disassemble” and transfer information from the SCP to the patient health record. Interviewees reported this effort as “routine,” but estimated significant time per survivor to perform this health-related work. They expressed a desire for automated, integrated communication with updated information pushed from the oncologist’s EHR to primary care’s EHR: “That would be a lot more useful than just sending a paper…I know I would want to have the patient come in and go over this document, but not every doctor’s going to and there’s going to be patients who then no-show this appointment, and then that ends up in scanning as a PDF and then, you know, who knows where that goes.” However, important qualifications to this desire included the acknowledgement that this would impact the ability to locate follow-up information intuitively for each individual. For instance, “it might cause more work or it might make your life much easier because it might pull in the diagnosis, but it doesn’t look right or it’s not, it’s not an ICD-10 so then you have to change it or something. If it was smart enough to do it in a way that...each individual person could kind of say, hey, you can pull it in and I don’t need to review it or pull it in and then I want to review it, but that adds more work”.

Design Challenges.

Interviewees repeatedly asked about assigning and updating roles and responsibilities in ways that exceeded the ability of a document produced at a single point in time to address. For instance, “I’m excited about this. This is a great start. I just wish it were, like I said, a living document, so some day maybe we can find a way to keep it updated.” When asked about updates, interviewees noted “we should update every year, just because it, there is so much that has to be monitored.” Requests included (1) direct links taking users from treatment information to supporting documents (e.g., surgery results linked to a pathology report), and (2) pagination support (e.g., noting in the Summary of Contents that a particular section started on page 1.) These design features could not be implemented because (1) the document needed to be faxable given lack of inter-operability across EHR vendor systems, and (2) the lack of automated pagination within the EHR.

Final Template and Design Requirements.

Changes are being incorporated into UW Health’s SCP templates, for use following approval by the UWCCC Survivorship Program for each disease type that currently provides SCPs. Versions of these re-engineered SCP templates will be available for download on the Epic User Web (userweb.epic.com). A final re-engineered SCP mock-up and generalizable design requirements are available in Supplemental Material 2 and 3.

DISCUSSION

We re-engineered an existing EHR-based SCP to streamline communication from oncology to primary care by interviewing largely rural primary care clinicians outside of our healthcare system about SCP content, format, layout, potential use and clinical workflows. Participating clinicians regarded our re-engineered SCP as a clinically useful tool for supporting care of survivors, especially the sections on recommended cancer related screening, preventative screening impacted by cancer/treatment, and timeline for recurrence risk. Important feedback included providing a single document to both survivors and primary care end-users, prioritizing contact information and recommendations on follow-up care, de-prioritizing the treatment summary (except for genetic testing) and removing information on health maintenance not impacted by cancer or its treatment (except for immunizations). This study is unique in collecting not only survey data, but also conducting qualitative interviews with primary care physicians and APPs regarding the content, layout, format and potential clinical use of SCPs, in an attempt to understand how SCPs could better address their needs. We believe that our results will contribute to an increased usefulness of SCPs or care planning communication in the primary care setting, which in turn may improve the quality of care provided to cancer survivors after they complete cancer treatment and are transferred to their primary care providers for future follow-up and care.

Primary care clinicians serve as an important resource for survivors and have always been intended recipients of SCPs. However, research to understand how primary care actually uses SCPs has been limited.¹³ Our interviewees were consistent in their desire to receive SCPs that focused on follow-up. This observation led to re-ordering of our template: consistent with other templates (e.g., ASCO, JourneyForward™), our original EHR-based SCP had the treatment summary first. This is derived from an earlier need to review treatment prior to generating follow-up recommendations. However, EHR-based templates can generate recommendations in any desired order. A major barrier to improving SCP usefulness in this project was a lack of consistency in how primary care clinicians abstracted and stored the relevant information within their own EHRs. This study highlights that an additional significant effort to “disassemble,” sort and file information is occurring on the receiving primary care end. Because of this effort, our interviewees did not want us to create a separate document for clinicians, as they felt that they would still need to review the survivor-focused SCP. The effort to disassemble an SCP likely represents a significant barrier and may help to explain low use rates for SCPs within the primary care setting.^3,12,26,27

This study is strengthened by recruiting and interviewing primary care clinicians from rural areas, which represents a group at increased risk for fragmented communication and collaboration in the survivorship setting given the increased likelihood that care will be split across multiple healthcare settings. Additionally, interviewees included both physicians and APPs to increase generalizability. Moreover, we employed rigorous engineering methodologies that encouraged examination of content, layout and format, and started from a solid basis of a long-standing EHR-based SCP template. Finally, we employed a rigorous, user-centered engineering model previously used in survivorship-related research.^9,12–14 This model facilitates examination of work system factors that affect design, use and implementation of health information technologies and tools such as an EHR-based SCP.^28–30 Limitations of this study include that few interviewees reported ever seeing or using an SCP in “real life” and were drawn from a single geographic area in the upper Midwest, which might limit generalizability. To address this, the third phase of this project surveyed of primary care clinicians from diverse geographic areas assessing the re-engineered SCP.²⁰

In conclusion, this study provides important insight into the information needs of primary care clinicians engaging in survivorship care, with an emphasis on clearly delineated, periodically updated follow-up. The additional workload related to filing SCP information so that it is readily available when needed in a primary care setting is a new finding, but not unexpected given the current lack of EHR intra-operability. Additional research is necessary to determine how to best support survivorship care within primary care settings without increasing primary care workload.

Supplementary Material

Supplemental Material 2

Supplemental Material 2 contains the final sample SCP and outlined SCP domains for EHR build.

Supplemental Material 3

Supplemental Material 3 contains generalizable design requirements

Supplemental Material 1

Supplemental Material 1 contains the interview guides and surveys, and the original SCP mock-up used for the first interviews

Implications for cancer survivors:

SCPs can be designed to better support primary care information needs, as can the delivery of information. These likely represent significant barriers to use of SCPs within the primary care setting.