Patient engagement has rapidly become a key component of many oncology programs, including the Commission on Cancer’s Cancer Program Standards and the American Society of Clinical Oncology’s (ASCO) Quality Oncology Practice Initiative and certification.1-6 Although patient engagement can mean different things to different stakeholders, the Center for Advancing Health (CFAH) defines patient engagement as “the actions we take to support our health and to benefit from health care.”1,7
Within this rubric, successful patient engagement involves creating a partnership between patients and their cancer care team; providing patients with the right tools at the right time to become engaged in their care in a meaningful way; and acknowledging the opportunities and limitations of patient participation.8 Studies have found that patients who are actively engaged in their care experience better health, improved care experiences, and lower healthcare costs.1,9,10
A variety of technologies has been developed to enhance patient engagement and to support, among other things, medication adherence, behavioral changes, relationships, and patient-reported outcomes (PROs). During cancer treatment, many patients not only welcome the opportunity to use engagement technologies , such as online tools and mobile apps to track their symptoms and side effects,11 but find that such tools can also be empowering. For instance, a study evaluating the web-based Connect system—designed to support communication collaboration, and shared decision making—with patients with breast or prostate cancer found that the Connect system led to better patient-provider communication, improved self-efficacy for patients, and lower rates of symptom distress and depression.12
Below, we review a range of technology-based engagement solutions, such as electronic medical records (EMRs) and patient portals, web- and mobile-based apps, online tools, and wireless devices.13
Examples of What Patient Engagement Means to Various Stakeholders
Patient ⇒ Do I truly understand what my condition is and do I know how to navigate and access care and support? Am I financially able to manage and afford my healthcare choices? What happens after treatment?
Physician ⇒ Am I providing patient education about disease state, treatment, other healthcare issues?
Systems ⇒ How is patient engagement measured from an outcomes perspective? (e.g., are we seeing changes in hospital readmission rates and length of stay, patient satisfaction, and medication adherence?)
Technology ⇒ How often are physicians connecting with patients via technology? What is being observed with activity and participation metrics?
Caregiver ⇒ How do I support the patient? How do I manage the financial and emotional stressors associated with being a caregiver?
Source: Mazi Rasulnia, PhD, MConsulting and co-founder of Pack Health
Basic patient portals connecting to EMR systems are becoming a mainstay of digital patient engagement. In 2012, an estimated 47% of respondents to a National eHealth Collaborative Consumer Engagement with Health Information Technology Survey reported offering patient portal access to their patients.14 In turn, patients appear to respond positively to patient portal access. For instance, Cancer Care 2016 found that approximately 81% of patients receiving active treatment utilized patient portals; this number fell slightly to 71% once patients completed treatment or were on maintenance therapy.15
Patient portals facilitate varying degrees of patient engagement. At one end of the spectrum, they may simply allow access to lab and test results, but without providing much in the way of clinical context or interpretation. At the other end of the spectrum, patient portals may guide users toward a broad range of resources, including the following: 10,16
- Multimedia education (e.g., condition, treatment, side effects)
- Contextualized laboratory and test results
- Clinical visit summaries
- Prescription refill requests
- Online scheduling
- Two-way messaging with healthcare teams
However, patient portals are not challenge-free. For example, such portals are often developed by and tethered to a specific vendor’s EMR. Thus, if a patient receives care from several different physician groups or hospitals, each with their own EMR, the onus is on patients to manage access to, and integrate information derived from, several different portals.17 In addition, patient portals, like many other technologies, still require patient-initiation in order to engage in the care process.17
Consequently, an increasing number of vendors are providing platforms that support more sophisticated provider-patient-caregiver interactions and are not bound to one EMR platform. Navigating Cancer is one example of a patient portal technology developed to support patient engagement and care management solutions for cancer centers (Table 1). This web-based solution integrates with any EHR system and also helps healthcare providers meet Stage 1 and Stage 2 Meaningful Use and many other new patient-centered care requirements.18
Online, App-Based, and Wearable Technology
According to a 2015 consumer survey, consumers in general appear to be comfortable with the notion of using technology in healthcare to support engagement activities (Fig.1).19 For instance, a recent patient engagement survey (N=173) found over 50% of patients reported interest in using online tools and mobile apps to track their symptoms and side effects.11 These levels of reported comfort appear to be affirmed by actual use in the everyday context of being a patient. Patients are increasingly using online messaging boards, blogs, YouTube videos, and social networking sites to connect with peers, patient coaches, and support groups.16 Additionally, when generated by healthcare providers (HCPs), social media tools can also be used to encourage patient engagement through promoting cancer screenings, support groups, and community awareness events.16
Fig. 1. The 2015 Pulse of Online Health Survey (N=1,015) found:
- 66% of Americans would use a health app to manage health-related issues
- 47% for tracking diet/nutrition
- 46% for medication reminders
- 45% for tracking symptoms
- 44% for tracking physical activity
- 79% would use a wearable device to manage their health
- 52% for tracking physical activity
- 45% for tracking symptoms
- 43% for managing personal health issue or condition
- 41% for tracking sleep patterns
- 39% for tracking diet/nutrition
- 88% would be willing to share personal information for the sake of improving care and treatment options
- Trust and quality sources for healthcare information is important to consumers
- 57% reported they use WebMD for information compared with the CDC (17%) and FDA (16%)
Patient assessment, care, and support can also be provided through telehealth, for example, through the use of telephones (teleconferencing) and video (virtual medical visits/coaching).13 There are also a multitude of technologies being used to support medication adherence, including phone or text medication and appointment reminders or home monitoring systems to review weight, and manage symptoms. For example, WebMD has several medical apps compatible with Apple devices that include features such as medication reminders, activity trackers, connectivity to other devices (e.g., scales, blood pressure monitors, glucometers), and pain and symptom trackers.
In oncology, web-based and mobile device sites and apps designed to serve a variety of functions are being more widely used to elicit, store, and transmit information; track health outcomes; support shared decision making; manage and coordinate care; and provide caregiver support.13,20 A variety of these innovations have also been used to increase patient engagement in oncology and improve outcomes. Adjuvant! Online and Predict are two suites of online prognostication and treatment benefit tools developed to assist HCPs and patients in discussing the merits and downsides of adjuvant therapies following breast cancer surgery.
Additionally, ASCO developed the Cancer.net app for mobile devices. This app provides up-to-date guides on more than 120 types of cancer and information on treatment, managing side effects, managing the cost of cancer care, and living with cancer. Cancer.net also includes a suite of interactive tools to help patients keep track of questions to ask their HCPs. The tool records voice-based responses to patient questions, saves information and pictures of prescribed medications, and tracks the time and severity of symptoms and side effects.
Wearable devices are increasingly being tapped as a way to support patient care. In fact, it is estimated that 245 million wearable devices (e.g., smart watches, fitness trackers) will be sold by 2019.21 For example, FitBit and Dana-Farber Cancer Institute have announced a partnership to investigate if weight loss in overweight and obese women with early breast cancer helps prevent cancer recurrence (Breast Cancer Weight Loss study). All participants in the study will receive health education and those in the FitBit weight loss group will be given FitBit products that allow patients and their assigned health coaches to track data that reflects patients weight, physical activity, and caloric goals. The health coaches will actively encourage patients to stay on track and reach their weight loss goals over the study period.22
Similarly, Polaris Health Directions has partnered with MD Anderson Cancer Center by providing their emPOWER medical app to patients with breast cancer for use on an Apple Watch. The emPower app collects data on health and behavioral metrics such as physical activity, sleep information, treatment side effects, and patient mood.23
Apps are also now being incorporated into clinical trial design. AstraZenca and Voluntus have partnered to create the eCO study app, which was designed for women undergoing treatment with an investigational drug combination for recurrent ovarian cancer. The eCO app was designed to be bidirectional, capturing and transmitting side effect data to healthcare providers and, in turn, providing patients with recommendations on how to manage their symptoms.24 Despite wide acceptance and use of mobile apps, there is still relatively little user-data evidence to show how they are used and how effective they are. Additionally, at this time there is no standardized rating system or centralized repository for comparison of apps.20
Technology to Support Patient-Reported Outcomes (PROs)
A variety of instruments have been developed to collect PRO data in patients with chronic diseases, including cancer. For example, the patient-reported outcomes measurement information system (PROMIS®) is a short (4-12 questions) paper or computer-adaptive test that can be embedded into a practice’s EHR system. PROMIS evaluates patient-reported health status across multiple domains such as pain, fatigue, depression, anxiety, sleep disturbance, physical function, social function, and sexual function.25,26 Similarly, the National Comprehensive Cancer Network (NCCN) has developed a distress thermometer and problem list for patients with cancer to fill out at point of care visits. The problem list addresses issues that might be concerning to patients across the practical, family, emotional, spiritual, and physical domains.27 As cancer care is often costly and can adversely impact cancer patients and their families, financial toxicity PRO tools have also been created specifically for patients with cancer.28
While some of PRO tools are still paper-based, electronic PRO (ePRO) solutions have arrived on the scene. For example, Flatiron and Vector Oncology have partnered to create a EMR-integrated Patient Care Monitor (PCM) Symptom Survey that collects and records patient data directly into the EMR at the point of care and between visits via a hosted, secure cloud model that is web- enabled, browser-based, and Windows and Mac compatible. The data collected on approximately 86 symptoms (e.g., physical symptoms, functional status, and psychosocial status) allow for ongoing clinical assessment.29-31
Technology to Support Relationships (e.g., coaching, navigation)
Technology is also being used to augment patient navigation and coaching programs to support patients at the point of care and beyond. In 2012, with the support of a $15 million, three-year grant, Edward Partridge, MD, at University of Alabama (UAB) cancer center, implemented the Patient Care Connect Program. This program was designed to train and utilize nonclinical lay navigators to help cancer patients navigate all aspects of their cancer journey and ensure nurses were able to practice at the top of their license. Over the study period, patients who had lay navigators experienced lower hospitalization rates, fewer ER visits, and reductions in ICU admissions. The cost savings were impressive as well with Medicare savings of $6,822 per patient for a total savings of approximately $21 million.32
Pack Health in Birmingham, Alabama, has built on the success of this program by blending technology support with nonclinical health advisors (lay navigators) to enhance patient engagement through high-touch symptom and distress management tools. Pack Health’s one-year program (three-months intensive, followed by nine-month maintenance) enrolls patients with chronic care conditions, including cancer. Pack Health’s program links patients with health advisors to provide patient education, navigation, supplemental care coordination and concierge services through the cancer care process for treatment- and non-treatment-related issues.
— Edward Partridge, MD, director of the UAB Comprehensive Cancer Care Center
Data (e.g., PRO, claims, phone/text logs) from the health advisor-patient interactions are collected, which allow for a complete picture of the patient experience to emerge and help guide appropriate interventions. Mazi Rasulnia, PhD, co-founder of Pack Health, observed that if, for instance, a patient receiving immunotherapy for bladder cancer experiences a treatment-related side effect, Pack Health will reach out to the oncology nurse/practice to apprise them of the situation and help facilitate follow-up care. Likewise, care coordination, coaching, and concierge services reflect individual patient needs and range from finding a new oncologist for patients who move, sourcing transportation if that is an issue, to assisting with insurance pre-authorization to helping patients reintegrate back into the primary care system once they have entered the survivorship stage of cancer care. The overall goal is that proactive management of symptoms and distress will result in fewer ER visits or hospital admissions and overall lower healthcare costs.
Similarly, Ochsner Health System’s O Bar (a riff on Apple’s Genius Bar) offers a “high-tech meets high-touch” approach to patient engagement. Launched in 2014, the O Bar currently targets patients with diabetes, high blood pressure, or who need help quitting smoking. The O Bar, a physical retail space located in the lobby of the Ochsner Center for Primary Care and Wellness, is stocked with tablets preloaded with vetted mobile apps to support consumer health. It is staffed by non-clinical “genius bar” type staff who answer can provide guidance and support on choosing and setting up the right type of app or product, any questions, and sell discounted devices (e.g., activity trackers, wireless scales, blood pressure monitors, and glucometers). The O Bar concept is also integrated into care settings through an O Bar “prescription pad” of available apps and devices provided to primary care providers.33,34
In the words of Dr. Richard Milani, a key force behind this concept: “We created this retail setting to show people how to make themselves healthier on their own, independent of their health system. We also felt that as a health system, we could show you which health apps were good and can help you get the app loaded on your phone to begin using it.” 33
Creating a Culture of Patient Engagement
High-tech solutions to support patient engagement are clearly evolving, and their effectiveness in immuno-oncology is, as yet, unknown. Therefore, it will be important to develop patient engagement support technologies that reflect the unique features of immuno-oncology (e.g., its response patterns and side effect profiles) and that are also designed in a user-centered way. For instance, educational materials and health information technology solutions can be designed in ways that incorporate and reflect the perspectives of both those using the resource and those receiving the resource.12,20,31
Notably, the human touch and personal connections are key to effectively engaging patients in their care decisions at various levels of health-care in order to minimize future issues that may result in suboptimal healthcare outcomes. As Mazi Rasulnia notes, relationships built on trust are at the core of true patient engagement, and technology serves as a vehicle for building upon that trust.
“The blend of tech and coaching allow for a trusting relationship to be established. When you have someone’s trust, you’ve helped them solve problems and you’ve given them the right tools. Then, throughout the care process you can extract additional meaningful information that helps them even more.”
— Mazi Rasulnia, PhD, MConsulting and co-founder of Pack Health
- Center for Advancing Health. Here to Stay. What Health Care Leaders Say About Patient Engagement. 2014; http://www.cfah.org/pdfs/here_to_stay_2014.pdf. Accessed July 28, 2016.
- Centers for Disease Control and Prevention. Meanignful Use. https://www.cdc.gov/ehrmeaningfuluse/introduction.html. Accessed July 28, 2016.
- American College of Surgeons. Cancer Program Standards (2016 Edition). https://www.facs.org/quality-programs/cancer/coc/standards. Accessed July 28, 2016.
- National Committee for Quality Assurance. Quality Profiles: Focus on Patient Engagement. http://www.ncqa.org/publications-products/other-products/quality-profiles/focus-on-patient-engagement. Accessed July 28, 2016.
- Centers for Medicare and Medicaid Services. CMS Quality Strategy https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/QualityInitiativesGenInfo/CMS-Quality-Strategy.html. Accessed July 28, 2016.
- American Scociety of Clinical Oncology Institute for Quality. QOPI Certification Program and Quality Oncology Practice Initiative. http://www.instituteforquality.org/qopi-certification-program-qcp. Accessed July 28, 2016.
- Center for Advancing Health. Engagement: Engagement Behavior Framework. http://www.cfah.org/engagement/. Accessed July 28, 2016.
- Weingart S. Patient Engagement and Patient Safety. https://psnet.ahrq.gov/perspectives/perspective/136/patient-engagement-and-patient-safety. Accessed July 28, 2016.
- Hibbard JH, Greene J. What the evidence shows about patient activation: better health outcomes and care experiences; fewer data on costs. Health Aff (Millwood). 2013;32(2):207-214.
- Carman KL, Dardess P, Maurer M, et al. Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health Affairs. 2013;32(2):9.
- Cook G. Digital Patient Engagement: Next Steps in the Provider-Patient Relationship. Oncology Business Review. 2012:4.
- Mirkovic J, Kaufman DR, Ruland CM. Supporting cancer patients in illness management: usability evaluation of a mobile app. JMIR Mhealth Uhealth. 2014;2(3):e33.
- Paget L, Salzberg C, Scholle S. Building a Strategy to Leverage Health Information Technology to Support Patient and Family Engagement. 2014 2014.
- Miliard M. NeHC Survey: Patient engagement a priority, strategy nascent. 2012; http://www.healthcareitnews.com/news/nehc-survey-patient-engagement-priority-strategy-nascent. Accessed July 28, 2016.
- CancerCare. Patient Access and Engagement Report (2016). 2016; http://www.cancercare.org/accessengagementreport. Accessed July 28, 2016.
- Schaeffer C. Talk to Me: Impove patient engagement; improve your cancer program. 2016; http://www.accc-cancer.org/oncology_issues/articles/JF16/JF16-Talk-to-Me.pdf. Accessed July 28, 2016.
- Miliard M. Patient engagement means ‘attitude adjustments’ on both sides 2015; http://www.healthcareitnews.com/news/patient-engagement-means-attitude-adjustments-both-sides. Accessed July 28, 2016.
- Navigating Cancer & Blood Disorders. https://www.navigatingcancer.com/. Accessed July 28, 2016.
- Pennic F. 66% of Americans Would Use Mobile Health Apps to Manage Their Health. 2015; http://hitconsultant.net/2015/02/24/66-of-americans-would-use-mobile-health-apps/. Accessed July 28, 2016.
- Hall L, Kunz B, Davids E, Dawson R, Powers R. The Cancer Experience Map: An Approach to Including the Patient Voice in Supportive Care Solutions. J Med Internet Res. 2015;17(5):14.
- McClain J. Smart watches, smart care: How wearables can improve patient engagement Advisory Board Care Transforamtion Center Blog 2016; May 20, 2016:https://www.advisory.com/research/care-transformation-center/care-transformation-center-blog/2016/05/wearables. Accessed July 28, 2016.
- Dana-Farber Cancer Institute. Dana-Farber and Fitbit partner to test if weight loss can prevent breast cancer recurrence http://www.dana-farber.org/Newsroom/News-Releases/dana-farber-cancer…artner-to-test-if-weight-loss-prevent-breast-cancer-recurrence.aspx Accessed July 28, 2016.
- Husain I. Polaris and MD Anderson team up for Apple Watch pilot study on Breast Cancer. 2015; http://www.imedicalapps.com/2015/12/apple-watch-study/. Accessed July 28, 2016.
- Cerrato P. eCO Study App created by pharma to specifically monitor two key side effects. 2016; http://www.imedicalapps.com/2016/07/eco-study-app-ovarian-cancer-side-effects/. Accessed July 28, 2016.
- HealthMeasures. Intro to PROMIS. http://www.healthmeasures.net/explore-measurement-systems/promis/intro-to-promis. Accessed July 27, 2016.
- Berger AM, Mitchell SA, Jacobsen PB, Pirl WF. Screening, evaluation, and management of cancer-related fatigue: Ready for implementation to practice? CA Cancer J Clin. 2015;65(3):190-211.
- National Comprehensive Cancer Network. NCCN Distress Thermometer and Problem List. https://www.nccn.org/about/permissions/thermometer.aspx. Accessed July 28, 2016.
- de Souza JA, Yap BJ, Hlubocky FJ, et al. The development of a financial toxicity patient-reported outcome in cancer: The COST measure. Cancer. 2014;120(20):3245-3253.
- Vector Oncology. Patient Engagment Platform. https://www.vectoroncology.com/heor/patient-engagement-platform. Accessed July 28, 2016.
- Flatiron Health and Vector Oncology to Offer Patient-Reported Outcomes at the Point of Care. PRNewswire 2014; http://www.prnewswire.com/news-releases/flatiron-health-and-vector-oncology-to-offer-patient-reported-outcomes-at-the-point-of-care-300006900.html. Accessed August 3, 2016.
- Schwartzberg L. The Patient Experience with Immuno-Oncology: Education, Assessment, and Access. Institute of Medicine; March 1, 2016; The University of Tennesse West Cancer Center.
- Thannickal B. Preliminary UAB study shows dramatic trend of cost savings in lay navigation program for cancer patients. https://www.uab.edu/news/focus-on-patient-care/item/6122-preliminary-uab-study-shows-dramatic-trend-of-cost-savings-in-lay-navigation-program-for-cancer-patients. Accessed July 27, 2016.
- Dorfman S. Ochsner Leverages Retail, Connected Health Tools & Apple Watch to Engage Consumers. 2015; http://www.himss.org/ochsner-leverages-retail-connected-health-tools-apple-watch-engage-consumers?ItemNumber=42912. Accessed July 28, 2016.
- Ochsner Health System Online Newsroom. Ochsner’s O Bar Uses Interactive Health Technology to Enhance Patient Engagement. Ochsner Health System Online Newsroom. 2014. https://news.ochsner.org/news-releases/ochsners-o-bar-uses-interactive-health-technology-to-enhance-patient-engage. Accessed August 3, 2016.