J Canc Educ DOI 10.1007/s13187-014-0768-x
Developing NaviCanPlan: A Mobile Web Resource Locator for Cancer Providers and Survivors Deborah Vollmer Dahlke & Debra Kellstedt & Armin D. Weinberg
# Springer Science+Business Media New York 2014
Abstract As of January, 2012, an estimated 13.7 million persons are living as cancer survivors. This population is expected to grow to nearly 18 million by 2022. While their treatment may be considered successful, many cancer survivors experience long-term physical, emotional, and psychosocial late effects of treatment. Our focus was on communitybased cancer care—both rural and urban—as almost 90 % of cancer care occurs in community settings, where a full complement of supportive healthcare professionals may not be available. This study describes the results of stakeholder engagement and the feedback processes used to create NaviCanPlan, a mobile web resource locator designed to educate and inform both providers and survivors in finding health-related services, often in noncancer center settings. Individual interviews with survivors and providers regarding resource needs to address a variety of physical and psychosocial late effects were supplemented with site visits, web-based polling, and webinars discussions. Overall, the results indicated a need for a programmatic approach to providing education about community, medical, and nonmedical resources for providers and survivors. Design and content criteria for a web-based mobile resource locator were defined, articulated, and implemented. Keywords Cancer . Healthcare . Survivorship D. Vollmer Dahlke (*) Texas A&M School of Public Health, 8402 Silver Mountain Cove, Austin, TX 78737, USA e-mail: [email protected] D. Kellstedt Texas A&M School of Public Health, 1266 TAMU, College Station, TX 77845, USA A. D. Weinberg Life Beyond Cancer Foundation, 5555 Del Monte Unit 305, Houston, TX 77056, USA
Introduction Cancer survivors are defined as persons who have been diagnosed with cancer, from the time of diagnosis through the remainder of their lives [1, 2]. As a result of improved detection and screening, innovations in clinical research and expanded access to care and treatment, more Americans are surviving cancer. As of January 2012, an estimated 13.7 million Americans are alive who have survived cancer, not including in situ, noninvasive cancer or basal and squamous cell skin cancers [3]. By 2022, the number of cancer survivors in the United States (US) is expected to increase to nearly 18 million [3]. The goal of cancer treatment is to “cure” the cancer, and for a large number of survivors, their course of therapy is successful and their cancer does not return. Yet, many cancer survivors are coping with the longer term or “late effects” of their cancer treatment [4, 5]. These late effects may be physical, social, financial, emotional, and/or psychological. Cancer survivors, their providers, caregivers, and family members continue to require support and information to achieve healthy survivorship and quality of life after active treatment ends. Many survivors do not receive the care, help, and education they need [6]. Providers and caregivers may lack the information and resources they need to support survivors [7, 8]. Increasingly, healthcare providers and systems are paying more attention to the needs of survivors, as evidenced by the Commission on Cancer’s accreditation focus ensuring that cancer patients are provided with treatment plans and survivorship care plans [7]. Additionally, more emphasis is placed on transitions for cancer survivors from being under the care of an oncologist to a family practitioner or community-based provider [8, 9]. The national cancer advocacy organizations including the American Cancer Society, LIVESTRONG, Cancer Support Community, Susan G. Komen for the Cure, and Life Beyond Cancer Foundation (LBCF) increasingly
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provide guidance and educational information to posttreatment cancer survivors, their families, and caregivers. Healthy People 2020: Improving the Health of Americans includes two objectives related to cancer survivors: (1) to increase the proportion of cancer survivors who are living 5 years or longer after diagnosis; and (2) to increase the mental and physical health-related quality of life of cancer survivors [10]. What is frequently lacking, in both the transition process and the ongoing educational support, is access to information about nonclinical resources for cancer survivors. Resources identified by national advocacy organizations may be useful to cancer survivors in general, but frequently lack specific information about local, or regional, community-based resources. As a result, many cancer survivors fail to find education and information on care and resources that could provide improved quality of life and survivorship. In 2010, the LIVESTRONG Foundation published the results of a national cancer survivor survey, “I learned to live with it is not good enough: Challenges reported by Post Treatment Survivors” [6]. For the most common physical concerns (i.e., energy, concentration, sexual functioning, and neuropathy), 55 % of the respondents selected the phrase “I learned to live with it” as the reason for not receiving care. Similarly, cancer survivors indicated that their emotional concerns were not being addressed, with fewer than half (49 %) stating that they received care for emotional needs. Practical concerns including problems with debt, school, employment, and insurance also were frequently not addressed, with less than 30 % of the survivors who responded stating that these needs were being met [6]. The lack of resources for survivors is not just a concern among survivors and advocacy groups. The National Research Council confirms that the US healthcare system is poorly prepared to address the care needs of the cancer survivor population, many of which are complex due to altered physiology, functional and cognitive impairment, multiple coexisting diseases, increased side effects from treatment, and greater need for social support [10]. In 2011, the Life Beyond Cancer Foundation (LBCF) began a collaborative program in concert with US Oncology, one of the largest community-based cancer care organizations in the US Organized by LBCF, the Providers for Survivors Network (PFSN) includes oncologists, nurse navigators, social workers, and health professionals representing ten US Oncology practices across seven states, comprising 99 individual service locations. Together, LBCF and the PFSN wanted to find efficient ways to identify, assess, and deliver community-specific, health-related resources to cancer survivors, either independently or through referrals from the oncologists’ offices (Fig. 1). Both LBCF and the PFSN were aware of growing opportunities in the use of mobile health (mHealth) technologies in serving the needs of patients and cancer survivors [11, 12].
According to the Pew Research Internet Health Project, 31 % of cell phone owners, and 52 % of smartphone owners, have used their phone to look up health or medical information [13]. Mobile technologies for health (mHealth) is widespread, and new and innovative ways of using mHealth to improve health and healthcare delivery are being rapidly adopted to help people manage their own health and wellness, promote healthy living, and gain access to useful information when and where they need it. LBCF took a strategic and measured approach to understanding the issues in order to develop a mHealth tool to address the problems of providing information, referral, and linkages for both clinical and nonclinical cancer survivorship resources using mobile web-based technology as the delivery mechanism.
Methods The methodology to create the tool’s requirements consisted of three data gathering activities conducted over the course of eight months including: (1) selected site visits to oncology practices; (2) a retreat with facilitated work groups supplemented with semi-structured video interviews; and (3) followup webinars with online polling. These sequential activities allowed us to move from a broad needs assessment to refined set of requirements to support building the mHealth application. First, in order to reflect the variety of community-based oncology practice settings, ten site visits were conducted in states where the PFSN were based. Urban and rural settings with diverse populations and a broad spectrum of cancer types were represented in oncology practices and clinics visited in Arizona, California, Colorado, Minnesota, Oklahoma, Oregon, and Texas. As approximately 21 % of cancer patients reside in rural areas, the US Oncology offices are likely to see a significant number of these patients since their offices and clinics are predominately located in smaller urban and suburban areas as compared to academic medical centers [14]. The cancer diagnoses represented among the US Oncology offices tend to reflect the types of diagnosis in the US population with breast, colon, prostate, and lung cancers predominating [3]. The visits were typically conducted over a 2-day period and consisted of meetings with: (1) the professional leadership (practice president, administrator, and physician responsible for survivorship initiatives); (2) mid-level providers who supported survivorship care; (3) survivors and volunteers; and (4) facility and community services representatives. Following the site visits, a two and one-half-day LBCF retreat was held near Austin, Texas, focusing on barrier identification and opportunities to healthy survivorship. The retreat was a professionally facilitated meeting conducted by Dannemiller Tyson Associates, and was attended by
J Canc Educ Fig. 1 Feedback from oncology practices on financial issues
approximately 150 in-treatment and post-treatment survivors and providers from the PFSN. A Whole-Scale Change™ approach was used to fully engage both the providers and survivors in a facilitated discussion [14]. The guiding framework was: “What we can do together, to better understand the challenge of finding community resources to address those nonclinical needs identified in a survivorship plan?” Videotaped sessions and interviews conducted during the retreat provided additional input. Draft requirements generated from output from the site visits and the retreat were used to guide a series of webinars that included participant polling with various healthcare professional staff in the PFSN network. Staff polled included physicians, social workers, nurses, and nurse navigators. Online and cloud-based software technologies including, GoToMeeting™ Webinars, ClickTools™, and SalesForce™ were used during the webinars. Methodology and Requirements for Developing NaviCanPlan This mixed-methodology data collection process with the PFSN identified two barriers that LBCF could help address: (1) assuring that the voice, needs and perspectives of community-based cancer care providers were heard; and (2) helping patients find the resources in their community to meet their needs and those identified in survivorship plans. These dual objectives established the key aims for the requirements to develop a mobile web resource locator application for cancer providers and survivors called “NaviCanPlan.” The mission for NaviCanPlan’s development was to address survivors’ needs for finding subspecialists that went beyond their clinical oncology care (e.g., plastic surgeons, palliative care physicians, hospice services, etc.) while also addressing the emotional, spiritual, financial, physical, and other needs to improve survivors’ outcomes along the path from diagnosis to a life beyond cancer. LBCF’s goal was to create an online mobile and web-based resource to guide and educate survivors on their journey, with the focus on
community and local resources. An important component of this goal was the web-based geographic information system to help survivors and providers identify, locate, and get access and/or directions to local community-based resources. A major concern was for the resources included in NaviCanPlan to be not only community-specific, but also to be validated or curated by providers, survivors, or cancer advocates familiar with the resources. The technology decisions regarding how to build NaviCanPlan were driven by the need to have a solid, lowcost database which could be easily maintained to update and expand the contacts and resource lists. The design requirements for a mobile tool and mobile web access also drove technology decisions. LBCF choose to use Salesforce as the database and received a grant from the Salesforce Foundation, based on LBCF’s nonprofit status, for the project. The geographic information system selected was ESRI’s ArcGIS online system. The content requirements were based largely on suggestions from the results of the extensive early interviews and were guided by ongoing webinars conducted by LBCF with cancer survivors, providers, and advocacy groups. The final requirements in building the tool were to group the resources by category and to use category names suggested by PFSN participants. The resource categories were supported by icon design elements that were also reviewed. The list of resource types and accompanying icons is shown in Fig. 2. A combined mobile web application system requirements document was developed that included information on the design of the data structure and wireframes, as well as the location of the search boxes, icons, and other graphic elements. The design decisions for NaviCanPlan included providing a way for survivors to locate community resources that they might not be aware of, under the assumption that they “don’t know what they don’t know.” To address this, a box was provided for users to type in a city name and state or a survivor’s zip code was added, and the system included a range or buffer zone (e.g., 5-10-20 miles or further) around the user’s location. In this way, survivors could become aware
J Canc Educ NaviCanPlan Service Types
Icons
Results
Personal Services
Site Visits Physical Activity
Community Support
Financial, Legal or Insurancce
Counseling
Nutritional
Spiritual/Faith-based
General Medical
The discussions at the site visits provided indicators of the type of professional or clinical support needed by survivors, and identified who among the oncologists’ staff would be the initial users of the mHealth application. The initial users were determined to be nurses, nurse navigators, social workers, dietitians, psychologists, physician assistants, and patient navigators. Discussions during these meetings revealed that current approaches to maintaining information on survivorship clinical and supportive services were highly variable, difficult to maintain, and often outdated, primarily due to time demands. The initial users stated that they were in need of educational resources to provide to patients. They stated that their resource lists were maintained in a variety of formats including notebooks, spreadsheets, and office databases. The resources were, more often than not, comprised mostly of cancer-specific organizations with an occasional community resource for transportation, temporary housing, or food assistance. Often lacking were listings or referral sources for direct financial aid and psychological support and other survivorship rehabilitation resources.
Cancer Centers
The LBCF Retreat Fig. 2 NaviCanPlan services and icons
of the different types of services they might use and be provided with contact information (i.e., address, phone, website) and driving directions from their home or location. Figure 3 is a composite of screenshots of a NaviCanPlan search. Next steps were to populate NaviCanPlan with data. Our team focused first on states where the PFSN offices were located. We also gathered national data from cancer-specific advocacy groups. Email and phone scripts were developed for contacting the cancer advocacy groups, and LBCF interns made contact with groups such as LiveSTRONG Foundation, American College of Surgeons, YMCA, and the Leukemia and Lymphoma Society who, in turn, provided databases with validated resources. In addition, data on digital media, books, and cancer and survivorship resources were collected from selected librarians, providers, and survivors from across the USA through the assistance of the National Library of Medicine’s regional office in Houston, Texas. The data were cleaned, organized by categories, and then loaded into LBCF’s Salesforce database, which was, in turn, used to populate the NaviCanPlan ESRI ArcGIS online mapping system.
The retreat was a professionally facilitated meeting conducted by Dannemiller Tyson Associates and was attended by approximately 150 in-treatment and post-treatment survivors and providers from the PFSN. The results of the meeting included a characterization of what the participants considered the most efficient way to bring nonclinical resources to meet the needs (e.g., financial, spiritual, emotional, nutritional, and physical) of survivors’ cancer survivorship plans. The results of the retreat were useful in providing specificity regarding survivors’ needs for finding subspecialists that went beyond their clinical oncology care (e.g., plastic surgeons, palliative care physicians, hospice services, etc.) while also addressing the emotional, spiritual, financial, physical, and other needs to improve survivors’ outcomes along the path from diagnosis to a life beyond cancer. The Follow-up Polling and Webinars Polling provided additional information on how resource lists were kept and the issues and concerns of providers in the US Oncology offices. The polls helped identify priority areas of services and resources for survivors and highlighted current inefficiencies in maintaining and delivering information, such as financial resources. Open-ended comments added to the polling process included comments such as, “We have no real source for resources in our community.” One user commented
J Canc Educ Fig. 3 Composite of NaviCanPlan geographic information system mapping
that she used the 211 system, but found that it was rather “generic.” The results of the poll also highlighted valuable insights about what types of tools and systems healthcare professionals were using to educate patients and survivors about community-based resources, what the most frequently requested resources were, and how providers wanted information delivered to them and made accessible to their patients. Polling indicated that the majority of patients who requested or required navigation to community-based services were newly diagnosed or in treatment, but nearly a third were post-treatment or long-term survivors. The two most pressing needs for assistance from patients were assistance with bills, including insurance co-payments and transportation costs. Access to cancer-specific advocacy groups (e.g., Lung Cancer Alliance, Susan G. Komen for the Cure, PanCan) for grief and loss counseling, palliative care, hospice and peer matching services, both by phone and in person, were among the most frequently requested types of psychosocial services. In addition to insurance co-payments, financial assistance for household bills, financial and insurance counseling, and prescription assistance were among the most frequently requested types of financial assistance. The polling confirmed that most of the providers maintained their lists of community-based services in paper notebooks, some used spreadsheets, and a number used sticky notes posted on their desks. Among those polled, there was unanimous request for a simple, easy to use and periodically updated resource system that would be location or community specific and that could be accessed by both providers and survivors. One nurse navigator stated, “I think I would get more requests for financial assistance at the oncology office if
patients thought I could provide help.” The respondents also provided clear suggestions for the functionality of a proposed navigation system: “The system would be ideal if it could interface with existing practice management system, and allow upload of all existing and future survivors’ personal health information accounts. The mobile application should be able to generate reports to identify disease specific patients and contact information for target marketing and outreach.” Overall, the polling response suggested that the lack of survivor-focused staff, sparse funding for survivor navigation, and no programmatic approaches to community resources made efforts to aid survivors problematic.
Discussion With all the advances in cancer care, cancer diagnostics, and personalized and precision medicine, the patient who today becomes a cancer survivor should be more hopeful than ever before. Even with the opportunities created by the passage of the Affordable Care Act, including new requirements to provide coverage for those with pre-existing conditions, coverage of survivorship concerns is beset with counter-productive regulations and coverage issues. Cancer survivors continue to struggle to find resources as they progress through treatment to a “new normal” of a life beyond cancer. While the healthcare team may be able to find the best possible clinical strategy to improve the patient outcomes, they frequently fail to incorporate and address survivors’ nonmedical needs. One might liken this to the difference between health and healthcare, or better yet, how we have now come to know
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that the social determinants of health must be addressed to have the fullest impact and societal benefit. The emphasis on developing cancer survivorship care plans and the call for navigation by the American College of Surgeons, ASCO, and others has the potential to be great steps forward. The reality is that most providers are still barely able to fully integrate traditional medical care and follow-up for cancer survivors. Issues like spiritual and financial concerns, sexuality, nutritional, and emotional concerns are acknowledged, but just how and where to obtain them is the challenge. For many of their educational and informational needs, cancer survivors and their families are left adrift. In an environment where the healthcare team has management and business forces calling for better and more efficient outcomes, there are few rewards and little time available to help survivors navigate to these resources. Worse still, there is little progress towards reimbursement for navigators and navigation until evidence is provided that they do indeed impact outcomes. NaviCanPlan was designed to assist in overcoming both of these conditions by providing a clearinghouse of both nonmedical and medical resources at the local level. When fully developed for a community or a region, NaviCanPlan will be able to harness the power of its individual users, both healthcare professional and patient, to rate the quality of the services they receive. Limitations The vast majority of survivorship research and resources developed to date frequently fails to transfer to community settings. Given the patient care and economic demands on community-based oncology practices, we choose methods that would allow input from potential end users over more rigorous sampling techniques. We acknowledge that while this is a limitation, our goal was not necessarily to have findings that would be “generalizable” but a tool that would be “adoptable” among oncology, general medicine and advocacy, and community programs. With this in mind, please note the oncology practices that participated in the design of NaviCanPlan were not randomly selected and those who provided input clearly have a bias in favor of addressing survivorship issues. Most cancer organizations have a primary focus on specific types of cancer and most focus on patients in treatment. There is an emerging focus on longer-term follow-up for cancer survivors among both providers and advocate organizations. Oncology providers in a community setting are faced with the full spectrum of treating and educating patients with various types of cancer through the stages of survivorship. Many national organizations, while recognizing the need for supportive services, both during treatment and post-treatment, are also faced with limited resources to assign to these efforts. The staff required to input and maintain information can appear
costly, especially when the funding for these types of services is scarce. NaviCanPlan is designed to partially address limitations of reach and depth of information by being able to load large data sets, when available. NaviCanPlan uses survey technology for loading new individual resources. This is combined with a data entry portal to automatically and periodically check with service providers and allow them to update their information and ensure their information is current. One limitation to this model is the concern that bad information poorly vetted could have a deleterious effect on survivors’ outcomes. While this is a valid and important concern, we cannot quantify the negative impact on survivors who lack the information and tools to assist them in finding resources they need. Our approach has attempted to recognize these challenges by putting the technology, process, and people together in a system that can capture an evolving experience base from the perspective of both provider and survivor.
Conclusions Efforts to improve cancer outcomes will include the need for and implementation of better survivorship planning. There is mounting evidence showing that complementing clinical care with nonclinical needs of the patient can enhance outcomes. Yet, if providers and survivors cannot assemble the resources in a timely and efficient manner, these outcomes will go unrealized. We believe that NaviCanPlan can meet some of the core requirements of providing an easily updated, mobile, and multi-platform clearinghouse of resources for survivors to access information and recommendations found in their survivorship plans and that meet their needs for achieving quality of life in cancer survivorship. The development of NaviCanPlan is one small step among many needed to develop an improved model of survivorship care in the US. Implementation research, including randomized trials, is needed to demonstrate the benefits of incorporating improved patient and provider education regarding post-treatment survivorship care needs [15]. The implementation of cancer survivorship care plans will require training and education, not only of oncology and primary care providers and patients, but also training and education of rehabilitation specialists regarding the needs and care of cancer survivors [16]. A better model of cancer survivorship care and comprehensive rehabilitation of cancer survivors will need to include coordination of research and policy change, especially for reimbursement for survivorship care planning and associated services. Acknowledgements The authors would like to thank Dan Li, BA, for his assistance in capturing NaviCanPlan Educational Materials, ESRI for the donation of the ARC GIS Online software, and Salesforce for the product donation.
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References 1. IAF-Health and HealthCare 2032. http://www.altfutures.org/pubs/RWJF/ IAF-HealthandHealthCare2032.pdf. Accessed 2 February 2014 2. Evaluating the NCI community cancer centers program pilot: summary of key findings NCCCP evaluation summary. http://ncccp.cancer.gov/ files/NCCCPevaluationsummary.pdf. Accessed 3 March 2014 3. American Cancer Society. Cancer facts & figures 2014. http://www. cancer.org/acs/groups/content/@research/documents/webcontent/ acspc-042151.pdf. Accessed 2 February 2014 4. de Moor JS, Mariotto AB, Parry C, Alfano CM, Padgett L, Kent EE, Rowland JH (2013) Cancer survivors in the United States: prevalence across the survivorship trajectory and implications for care. Cancer Epidemiol Biomark 22(4):561–570 5. Buchanan, N. D., King, J. B., Rodriguez, J. L., White, A., Trivers, K. F., Forsythe, L. P., … & Sabatino SA (2013) Changes among US cancer survivors: comparing demographic, diagnostic, and health care findings from the 1992 and 2010 national health interview surveys. ISRN Oncol 6. Beckjord EB, Reynolds KA, Van Londen GJ, Burns R, Singh R, Arvey SR, Rechis R (2014) Population-level trends in post-treatment cancer survivors’ concerns and associated receipt of care: results from the 2006 and 2010 LIVESTRONG surveys. J Psychosoc Oncol 32(2):125–151 7. Wagner LI, Spiegel D, Pearman T (2013) Using the science of psychosocial care to implement the new American College of Surgeons Commission on Cancer distress screening standard. J Natl Compr Cancer Netw 11(2):214–221
8. Alfano CM, Ganz PA, Rowland JH, Hahn EE (2012) Cancer survivorship and cancer rehabilitation: revitalizing the link. J Clin Oncol 30(9):904–906 9. Bosserman LD, Everson LK, Weinberg AD (2012) Embracing the ‘new normal’. Commun Oncol 9(1):31–3 10. US Department of Health and Human Services, Office of Disease Prevention and Health Promotion (2012) Healthy People 2020.Washington, DC 11. Levit L, Balogh E, Nass S, Ganz PA (2013) Delivering high-quality cancer care: charting a new course for a system in crisis. Institute of Medicine, Washington, DC 12. Davis KM, Dawson D, Kelly S, Red S, Penek S, Lynch J, … & Taylor KL (2013) Monitoring of health-related quality of life and symptoms in prostate cancer survivors: a randomized trial. J Support Oncol 11(4):174 13. Hong Y, Vollmer Dahlke D, Ory M, Hochhalter A, Reynolds J, Purcell N, Talwar D, Eugene N. (2013) Designing iCanFit: a mobile-enabled web application to promote physical activity for older cancer survivors. JMIR Res Protoc 2013;2(1): e12 14. Pedro LW, Schmiege SJ (2014) Rural living as context: a study of disparities in long-term cancer survivors. In Oncology Nursing Forum (Vol. 41, No. 3, pp. E211-E219). Oncology Nursing Society 15. Dannemiller KD, James SL, Tolchinsky PD (1999) Whole-scale change. Communications, Berrett Koehler 16. Pew Research Center’s Internet & American Life Project. (2013) Health fact sheet. http://www.pewinternet.org/fact-sheets/healthfact-sheet/ Accessed 3 March, 2014
Developing NaviCanPlan: A Mobile Web Resource Locator for Cancer Providers and Survivors Deborah Vollmer Dahlke & Debra Kellstedt & Armin D. Weinberg
# Springer Science+Business Media New York 2014
Abstract As of January, 2012, an estimated 13.7 million persons are living as cancer survivors. This population is expected to grow to nearly 18 million by 2022. While their treatment may be considered successful, many cancer survivors experience long-term physical, emotional, and psychosocial late effects of treatment. Our focus was on communitybased cancer care—both rural and urban—as almost 90 % of cancer care occurs in community settings, where a full complement of supportive healthcare professionals may not be available. This study describes the results of stakeholder engagement and the feedback processes used to create NaviCanPlan, a mobile web resource locator designed to educate and inform both providers and survivors in finding health-related services, often in noncancer center settings. Individual interviews with survivors and providers regarding resource needs to address a variety of physical and psychosocial late effects were supplemented with site visits, web-based polling, and webinars discussions. Overall, the results indicated a need for a programmatic approach to providing education about community, medical, and nonmedical resources for providers and survivors. Design and content criteria for a web-based mobile resource locator were defined, articulated, and implemented. Keywords Cancer . Healthcare . Survivorship D. Vollmer Dahlke (*) Texas A&M School of Public Health, 8402 Silver Mountain Cove, Austin, TX 78737, USA e-mail: [email protected] D. Kellstedt Texas A&M School of Public Health, 1266 TAMU, College Station, TX 77845, USA A. D. Weinberg Life Beyond Cancer Foundation, 5555 Del Monte Unit 305, Houston, TX 77056, USA
Introduction Cancer survivors are defined as persons who have been diagnosed with cancer, from the time of diagnosis through the remainder of their lives [1, 2]. As a result of improved detection and screening, innovations in clinical research and expanded access to care and treatment, more Americans are surviving cancer. As of January 2012, an estimated 13.7 million Americans are alive who have survived cancer, not including in situ, noninvasive cancer or basal and squamous cell skin cancers [3]. By 2022, the number of cancer survivors in the United States (US) is expected to increase to nearly 18 million [3]. The goal of cancer treatment is to “cure” the cancer, and for a large number of survivors, their course of therapy is successful and their cancer does not return. Yet, many cancer survivors are coping with the longer term or “late effects” of their cancer treatment [4, 5]. These late effects may be physical, social, financial, emotional, and/or psychological. Cancer survivors, their providers, caregivers, and family members continue to require support and information to achieve healthy survivorship and quality of life after active treatment ends. Many survivors do not receive the care, help, and education they need [6]. Providers and caregivers may lack the information and resources they need to support survivors [7, 8]. Increasingly, healthcare providers and systems are paying more attention to the needs of survivors, as evidenced by the Commission on Cancer’s accreditation focus ensuring that cancer patients are provided with treatment plans and survivorship care plans [7]. Additionally, more emphasis is placed on transitions for cancer survivors from being under the care of an oncologist to a family practitioner or community-based provider [8, 9]. The national cancer advocacy organizations including the American Cancer Society, LIVESTRONG, Cancer Support Community, Susan G. Komen for the Cure, and Life Beyond Cancer Foundation (LBCF) increasingly
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provide guidance and educational information to posttreatment cancer survivors, their families, and caregivers. Healthy People 2020: Improving the Health of Americans includes two objectives related to cancer survivors: (1) to increase the proportion of cancer survivors who are living 5 years or longer after diagnosis; and (2) to increase the mental and physical health-related quality of life of cancer survivors [10]. What is frequently lacking, in both the transition process and the ongoing educational support, is access to information about nonclinical resources for cancer survivors. Resources identified by national advocacy organizations may be useful to cancer survivors in general, but frequently lack specific information about local, or regional, community-based resources. As a result, many cancer survivors fail to find education and information on care and resources that could provide improved quality of life and survivorship. In 2010, the LIVESTRONG Foundation published the results of a national cancer survivor survey, “I learned to live with it is not good enough: Challenges reported by Post Treatment Survivors” [6]. For the most common physical concerns (i.e., energy, concentration, sexual functioning, and neuropathy), 55 % of the respondents selected the phrase “I learned to live with it” as the reason for not receiving care. Similarly, cancer survivors indicated that their emotional concerns were not being addressed, with fewer than half (49 %) stating that they received care for emotional needs. Practical concerns including problems with debt, school, employment, and insurance also were frequently not addressed, with less than 30 % of the survivors who responded stating that these needs were being met [6]. The lack of resources for survivors is not just a concern among survivors and advocacy groups. The National Research Council confirms that the US healthcare system is poorly prepared to address the care needs of the cancer survivor population, many of which are complex due to altered physiology, functional and cognitive impairment, multiple coexisting diseases, increased side effects from treatment, and greater need for social support [10]. In 2011, the Life Beyond Cancer Foundation (LBCF) began a collaborative program in concert with US Oncology, one of the largest community-based cancer care organizations in the US Organized by LBCF, the Providers for Survivors Network (PFSN) includes oncologists, nurse navigators, social workers, and health professionals representing ten US Oncology practices across seven states, comprising 99 individual service locations. Together, LBCF and the PFSN wanted to find efficient ways to identify, assess, and deliver community-specific, health-related resources to cancer survivors, either independently or through referrals from the oncologists’ offices (Fig. 1). Both LBCF and the PFSN were aware of growing opportunities in the use of mobile health (mHealth) technologies in serving the needs of patients and cancer survivors [11, 12].
According to the Pew Research Internet Health Project, 31 % of cell phone owners, and 52 % of smartphone owners, have used their phone to look up health or medical information [13]. Mobile technologies for health (mHealth) is widespread, and new and innovative ways of using mHealth to improve health and healthcare delivery are being rapidly adopted to help people manage their own health and wellness, promote healthy living, and gain access to useful information when and where they need it. LBCF took a strategic and measured approach to understanding the issues in order to develop a mHealth tool to address the problems of providing information, referral, and linkages for both clinical and nonclinical cancer survivorship resources using mobile web-based technology as the delivery mechanism.
Methods The methodology to create the tool’s requirements consisted of three data gathering activities conducted over the course of eight months including: (1) selected site visits to oncology practices; (2) a retreat with facilitated work groups supplemented with semi-structured video interviews; and (3) followup webinars with online polling. These sequential activities allowed us to move from a broad needs assessment to refined set of requirements to support building the mHealth application. First, in order to reflect the variety of community-based oncology practice settings, ten site visits were conducted in states where the PFSN were based. Urban and rural settings with diverse populations and a broad spectrum of cancer types were represented in oncology practices and clinics visited in Arizona, California, Colorado, Minnesota, Oklahoma, Oregon, and Texas. As approximately 21 % of cancer patients reside in rural areas, the US Oncology offices are likely to see a significant number of these patients since their offices and clinics are predominately located in smaller urban and suburban areas as compared to academic medical centers [14]. The cancer diagnoses represented among the US Oncology offices tend to reflect the types of diagnosis in the US population with breast, colon, prostate, and lung cancers predominating [3]. The visits were typically conducted over a 2-day period and consisted of meetings with: (1) the professional leadership (practice president, administrator, and physician responsible for survivorship initiatives); (2) mid-level providers who supported survivorship care; (3) survivors and volunteers; and (4) facility and community services representatives. Following the site visits, a two and one-half-day LBCF retreat was held near Austin, Texas, focusing on barrier identification and opportunities to healthy survivorship. The retreat was a professionally facilitated meeting conducted by Dannemiller Tyson Associates, and was attended by
J Canc Educ Fig. 1 Feedback from oncology practices on financial issues
approximately 150 in-treatment and post-treatment survivors and providers from the PFSN. A Whole-Scale Change™ approach was used to fully engage both the providers and survivors in a facilitated discussion [14]. The guiding framework was: “What we can do together, to better understand the challenge of finding community resources to address those nonclinical needs identified in a survivorship plan?” Videotaped sessions and interviews conducted during the retreat provided additional input. Draft requirements generated from output from the site visits and the retreat were used to guide a series of webinars that included participant polling with various healthcare professional staff in the PFSN network. Staff polled included physicians, social workers, nurses, and nurse navigators. Online and cloud-based software technologies including, GoToMeeting™ Webinars, ClickTools™, and SalesForce™ were used during the webinars. Methodology and Requirements for Developing NaviCanPlan This mixed-methodology data collection process with the PFSN identified two barriers that LBCF could help address: (1) assuring that the voice, needs and perspectives of community-based cancer care providers were heard; and (2) helping patients find the resources in their community to meet their needs and those identified in survivorship plans. These dual objectives established the key aims for the requirements to develop a mobile web resource locator application for cancer providers and survivors called “NaviCanPlan.” The mission for NaviCanPlan’s development was to address survivors’ needs for finding subspecialists that went beyond their clinical oncology care (e.g., plastic surgeons, palliative care physicians, hospice services, etc.) while also addressing the emotional, spiritual, financial, physical, and other needs to improve survivors’ outcomes along the path from diagnosis to a life beyond cancer. LBCF’s goal was to create an online mobile and web-based resource to guide and educate survivors on their journey, with the focus on
community and local resources. An important component of this goal was the web-based geographic information system to help survivors and providers identify, locate, and get access and/or directions to local community-based resources. A major concern was for the resources included in NaviCanPlan to be not only community-specific, but also to be validated or curated by providers, survivors, or cancer advocates familiar with the resources. The technology decisions regarding how to build NaviCanPlan were driven by the need to have a solid, lowcost database which could be easily maintained to update and expand the contacts and resource lists. The design requirements for a mobile tool and mobile web access also drove technology decisions. LBCF choose to use Salesforce as the database and received a grant from the Salesforce Foundation, based on LBCF’s nonprofit status, for the project. The geographic information system selected was ESRI’s ArcGIS online system. The content requirements were based largely on suggestions from the results of the extensive early interviews and were guided by ongoing webinars conducted by LBCF with cancer survivors, providers, and advocacy groups. The final requirements in building the tool were to group the resources by category and to use category names suggested by PFSN participants. The resource categories were supported by icon design elements that were also reviewed. The list of resource types and accompanying icons is shown in Fig. 2. A combined mobile web application system requirements document was developed that included information on the design of the data structure and wireframes, as well as the location of the search boxes, icons, and other graphic elements. The design decisions for NaviCanPlan included providing a way for survivors to locate community resources that they might not be aware of, under the assumption that they “don’t know what they don’t know.” To address this, a box was provided for users to type in a city name and state or a survivor’s zip code was added, and the system included a range or buffer zone (e.g., 5-10-20 miles or further) around the user’s location. In this way, survivors could become aware
J Canc Educ NaviCanPlan Service Types
Icons
Results
Personal Services
Site Visits Physical Activity
Community Support
Financial, Legal or Insurancce
Counseling
Nutritional
Spiritual/Faith-based
General Medical
The discussions at the site visits provided indicators of the type of professional or clinical support needed by survivors, and identified who among the oncologists’ staff would be the initial users of the mHealth application. The initial users were determined to be nurses, nurse navigators, social workers, dietitians, psychologists, physician assistants, and patient navigators. Discussions during these meetings revealed that current approaches to maintaining information on survivorship clinical and supportive services were highly variable, difficult to maintain, and often outdated, primarily due to time demands. The initial users stated that they were in need of educational resources to provide to patients. They stated that their resource lists were maintained in a variety of formats including notebooks, spreadsheets, and office databases. The resources were, more often than not, comprised mostly of cancer-specific organizations with an occasional community resource for transportation, temporary housing, or food assistance. Often lacking were listings or referral sources for direct financial aid and psychological support and other survivorship rehabilitation resources.
Cancer Centers
The LBCF Retreat Fig. 2 NaviCanPlan services and icons
of the different types of services they might use and be provided with contact information (i.e., address, phone, website) and driving directions from their home or location. Figure 3 is a composite of screenshots of a NaviCanPlan search. Next steps were to populate NaviCanPlan with data. Our team focused first on states where the PFSN offices were located. We also gathered national data from cancer-specific advocacy groups. Email and phone scripts were developed for contacting the cancer advocacy groups, and LBCF interns made contact with groups such as LiveSTRONG Foundation, American College of Surgeons, YMCA, and the Leukemia and Lymphoma Society who, in turn, provided databases with validated resources. In addition, data on digital media, books, and cancer and survivorship resources were collected from selected librarians, providers, and survivors from across the USA through the assistance of the National Library of Medicine’s regional office in Houston, Texas. The data were cleaned, organized by categories, and then loaded into LBCF’s Salesforce database, which was, in turn, used to populate the NaviCanPlan ESRI ArcGIS online mapping system.
The retreat was a professionally facilitated meeting conducted by Dannemiller Tyson Associates and was attended by approximately 150 in-treatment and post-treatment survivors and providers from the PFSN. The results of the meeting included a characterization of what the participants considered the most efficient way to bring nonclinical resources to meet the needs (e.g., financial, spiritual, emotional, nutritional, and physical) of survivors’ cancer survivorship plans. The results of the retreat were useful in providing specificity regarding survivors’ needs for finding subspecialists that went beyond their clinical oncology care (e.g., plastic surgeons, palliative care physicians, hospice services, etc.) while also addressing the emotional, spiritual, financial, physical, and other needs to improve survivors’ outcomes along the path from diagnosis to a life beyond cancer. The Follow-up Polling and Webinars Polling provided additional information on how resource lists were kept and the issues and concerns of providers in the US Oncology offices. The polls helped identify priority areas of services and resources for survivors and highlighted current inefficiencies in maintaining and delivering information, such as financial resources. Open-ended comments added to the polling process included comments such as, “We have no real source for resources in our community.” One user commented
J Canc Educ Fig. 3 Composite of NaviCanPlan geographic information system mapping
that she used the 211 system, but found that it was rather “generic.” The results of the poll also highlighted valuable insights about what types of tools and systems healthcare professionals were using to educate patients and survivors about community-based resources, what the most frequently requested resources were, and how providers wanted information delivered to them and made accessible to their patients. Polling indicated that the majority of patients who requested or required navigation to community-based services were newly diagnosed or in treatment, but nearly a third were post-treatment or long-term survivors. The two most pressing needs for assistance from patients were assistance with bills, including insurance co-payments and transportation costs. Access to cancer-specific advocacy groups (e.g., Lung Cancer Alliance, Susan G. Komen for the Cure, PanCan) for grief and loss counseling, palliative care, hospice and peer matching services, both by phone and in person, were among the most frequently requested types of psychosocial services. In addition to insurance co-payments, financial assistance for household bills, financial and insurance counseling, and prescription assistance were among the most frequently requested types of financial assistance. The polling confirmed that most of the providers maintained their lists of community-based services in paper notebooks, some used spreadsheets, and a number used sticky notes posted on their desks. Among those polled, there was unanimous request for a simple, easy to use and periodically updated resource system that would be location or community specific and that could be accessed by both providers and survivors. One nurse navigator stated, “I think I would get more requests for financial assistance at the oncology office if
patients thought I could provide help.” The respondents also provided clear suggestions for the functionality of a proposed navigation system: “The system would be ideal if it could interface with existing practice management system, and allow upload of all existing and future survivors’ personal health information accounts. The mobile application should be able to generate reports to identify disease specific patients and contact information for target marketing and outreach.” Overall, the polling response suggested that the lack of survivor-focused staff, sparse funding for survivor navigation, and no programmatic approaches to community resources made efforts to aid survivors problematic.
Discussion With all the advances in cancer care, cancer diagnostics, and personalized and precision medicine, the patient who today becomes a cancer survivor should be more hopeful than ever before. Even with the opportunities created by the passage of the Affordable Care Act, including new requirements to provide coverage for those with pre-existing conditions, coverage of survivorship concerns is beset with counter-productive regulations and coverage issues. Cancer survivors continue to struggle to find resources as they progress through treatment to a “new normal” of a life beyond cancer. While the healthcare team may be able to find the best possible clinical strategy to improve the patient outcomes, they frequently fail to incorporate and address survivors’ nonmedical needs. One might liken this to the difference between health and healthcare, or better yet, how we have now come to know
J Canc Educ
that the social determinants of health must be addressed to have the fullest impact and societal benefit. The emphasis on developing cancer survivorship care plans and the call for navigation by the American College of Surgeons, ASCO, and others has the potential to be great steps forward. The reality is that most providers are still barely able to fully integrate traditional medical care and follow-up for cancer survivors. Issues like spiritual and financial concerns, sexuality, nutritional, and emotional concerns are acknowledged, but just how and where to obtain them is the challenge. For many of their educational and informational needs, cancer survivors and their families are left adrift. In an environment where the healthcare team has management and business forces calling for better and more efficient outcomes, there are few rewards and little time available to help survivors navigate to these resources. Worse still, there is little progress towards reimbursement for navigators and navigation until evidence is provided that they do indeed impact outcomes. NaviCanPlan was designed to assist in overcoming both of these conditions by providing a clearinghouse of both nonmedical and medical resources at the local level. When fully developed for a community or a region, NaviCanPlan will be able to harness the power of its individual users, both healthcare professional and patient, to rate the quality of the services they receive. Limitations The vast majority of survivorship research and resources developed to date frequently fails to transfer to community settings. Given the patient care and economic demands on community-based oncology practices, we choose methods that would allow input from potential end users over more rigorous sampling techniques. We acknowledge that while this is a limitation, our goal was not necessarily to have findings that would be “generalizable” but a tool that would be “adoptable” among oncology, general medicine and advocacy, and community programs. With this in mind, please note the oncology practices that participated in the design of NaviCanPlan were not randomly selected and those who provided input clearly have a bias in favor of addressing survivorship issues. Most cancer organizations have a primary focus on specific types of cancer and most focus on patients in treatment. There is an emerging focus on longer-term follow-up for cancer survivors among both providers and advocate organizations. Oncology providers in a community setting are faced with the full spectrum of treating and educating patients with various types of cancer through the stages of survivorship. Many national organizations, while recognizing the need for supportive services, both during treatment and post-treatment, are also faced with limited resources to assign to these efforts. The staff required to input and maintain information can appear
costly, especially when the funding for these types of services is scarce. NaviCanPlan is designed to partially address limitations of reach and depth of information by being able to load large data sets, when available. NaviCanPlan uses survey technology for loading new individual resources. This is combined with a data entry portal to automatically and periodically check with service providers and allow them to update their information and ensure their information is current. One limitation to this model is the concern that bad information poorly vetted could have a deleterious effect on survivors’ outcomes. While this is a valid and important concern, we cannot quantify the negative impact on survivors who lack the information and tools to assist them in finding resources they need. Our approach has attempted to recognize these challenges by putting the technology, process, and people together in a system that can capture an evolving experience base from the perspective of both provider and survivor.
Conclusions Efforts to improve cancer outcomes will include the need for and implementation of better survivorship planning. There is mounting evidence showing that complementing clinical care with nonclinical needs of the patient can enhance outcomes. Yet, if providers and survivors cannot assemble the resources in a timely and efficient manner, these outcomes will go unrealized. We believe that NaviCanPlan can meet some of the core requirements of providing an easily updated, mobile, and multi-platform clearinghouse of resources for survivors to access information and recommendations found in their survivorship plans and that meet their needs for achieving quality of life in cancer survivorship. The development of NaviCanPlan is one small step among many needed to develop an improved model of survivorship care in the US. Implementation research, including randomized trials, is needed to demonstrate the benefits of incorporating improved patient and provider education regarding post-treatment survivorship care needs [15]. The implementation of cancer survivorship care plans will require training and education, not only of oncology and primary care providers and patients, but also training and education of rehabilitation specialists regarding the needs and care of cancer survivors [16]. A better model of cancer survivorship care and comprehensive rehabilitation of cancer survivors will need to include coordination of research and policy change, especially for reimbursement for survivorship care planning and associated services. Acknowledgements The authors would like to thank Dan Li, BA, for his assistance in capturing NaviCanPlan Educational Materials, ESRI for the donation of the ARC GIS Online software, and Salesforce for the product donation.
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