Patient Advisory Services for Cancer Patients
GRYT Health Cancer Community, the Moffitt Cancer Center, and Cancer Champions are three organizations dedicated to providing patient advisory services for cancer patients in the United States. Although each organization differs in size and scope, all three are led by experienced cancer survivors and medical professionals seeking to provide cancer patients with support, information, and a voice in their own treatment decision-making processes. GRYT Health offers users a plethora of information and community support via the GRYT app, Moffitt Cancer Center represents one of the top cancer research and treatment centers in the nation, and Cancer Champions is one-person private advocacy service for cancer patients and their loved ones.
GRYT Health Cancer Community Overview and Recent News
- Overview of GRYT Health:
- GRYT Health is a community of patients and caregivers designed to foster a supportive, inspirational environment of shared experiences and information relevant to the journey of cancer diagnosis and treatment. The community is primarily app-based, described by its creators as a "digital cancer support group in your pocket".
- The primary focus of GRYT Health is the idea that "information is an undeniable right". GRYT wants cancer patients to have access to facts about the variety of treatment options available to them so they are empowered to make the best choices for themselves.
- The company notes that it is funded and managed entirely by patients and caregivers, unlike many US-based platforms, which are generally financed by venture capital firms and may sell patient data to third parties. GRYT, on the other hand, allows users complete anonymity and claims to never sell user information.
- Though exact data could not be located regarding the total number of users or amount of funding amassed by GRYT Health, the company reports approximately 1,000,000 user interactions, 100,000 patient-caregiver connections, and 150,000 message exchanges on its platform since launch.
- Mentions of GRYT Health in recent news articles:
- 'GRYT Health receives Participant Engagement Award at SCOPE Summit': On February 15, 2018, GRYT was featured in a LinkedIn article referring to the Summit for Clinical Ops Executives (SCOPE) 2018 Participant Engagement Awards. GRYT Health received an award for innovation and changing how the industry interacts with patients and clinical trial participants.
- 'Digital health company in Rochester works to connect cancer patients, survivors online': On November 1, 2019, an ABC affiliate in Rochester, NY published a story about Gryt Health and its co-founder David Fuehrer, a two-time testicular cancer survivor. The story describes Fuehrer's uncertainty and embarrassment after his first diagnosis, feelings which led him and others to develop the GRYT platform.
- 'A chatbot pulled me out of a "really dark place"': On January 7, 2020, BBC News featured a story about 28-year-old Alexa Jett, a thyroid cancer survivor whose close friend recently died of cancer at age 33. Ms. Jett describes her use of Vivibot, a chatbot offered by GRYT, as helpful in improving her mental and emotional well-being. The chatbot is described as "funny and friendly", with mood reports and encouraging tips to help depressed or anxious patients function and set goals.
GRYT Health Cancer Community Features and Competitive Advantages
- GRYT Health products, services, and features:
- The main product of the GRYT Health Cancer Community is the award-winning GRYT app, which provides real-time, anonymous community support and tailored, relevant information to those affected by cancer. Users of the GRYT app are able to create customized profiles to match them with peers and information suited to their unique circumstances.
- As part of the GRYT app, the Vivibot interactive chatbot was developed to support cancer patients by providing coping skills and personal stories from cancer survivors. The chatbot is non-judgmental, "optimistic and spunky", and was designed in collaboration with young cancer survivors to help others "rebuild and recover" after cancer treatment.
- In 2019, GRYT established the Global Virtual Cancer Conference to encourage collaboration between patients, caregivers, and healthcare professionals in developing cancer treatment plans, asserting that healthcare decisions "cannot be left to professionals alone". The annual conference is hosted digitally on the GRYT platform and intends to work toward improving outcomes for cancer patients using "everyone's ideas and experiences".
- In 2020, GRYT began offering a 'Cancer and COVID-19' virtual video conference series in with cancer patients are able to communicate with healthcare experts about their pandemic-related concerns. In the series, physicians and other healthcare experts share experience and answer questions about COVID-19 to give patients "hope, resilience, and knowledge".
- Competitive advantages of GRYT Health:
- Everyone on the leadership team at GRYT Health "has been personally affected by a cancer diagnosis", and is committed to using their knowledge to help other cancer patients. The GRYT team has members who previously worked in medicine, pharmacy, finance, and communications, funneling a wide range of expertise into a patient-focused model of service.
- The GRYT app offers an anonymous community for patients and survivors to connect with medical professionals and researchers in real-time. GRYT boasts that users are "100% in charge" of their personal data on the platform.
- In addition to interpersonal connection, the GRYT app offers patients information about clinical trials in which they may be able to participate and also allows them to participate in market research that can accelerate helpful treatment discoveries.
Moffitt Cancer Center Overview and Recent News
- Overview of Moffitt Cancer Center:
- Moffitt Cancer Center is cancer care center in West Central Florida. The center was officially labeled a Comprehensive Cancer Center by the National Cancer Institute (NCI) in 2001, a designation reserved for care centers displaying scientific excellence, research discovery and development, and medical advances.
- Moffitt has received over $46,000,000 in research grant funding, including more than 50% of all NCI funding in the state of Florida. The center also houses the largest cancer research facility in Florida, which has conducted over 450 clinical trials.
- Residents from all Florida counties, every US state, and over 130 other countries have been treated by professionals at Moffitt Cancer Center. Overall, the center reports having seen 68,148 patients, facilitated 450,760 outpatient visits, and performed 11,601 surgeries.
- Mentions of Moffitt Cancer Center in recent news articles:
- '2019-20 U.S. News Best Hospitals for Cancer': On July 29, 2019, US News recognized the nation's best cancer hospitals of the year, ranking Moffitt Cancer Center eighth, tied with Massachusetts General Hospital. US News evaluated each hospital based on characteristics such as patient experience, key patient programs, staff quality, and "expert opinion from oncologists".
- '2019 Recipients of the Guardian of Excellence Award': On November 19, 2019, Moffitt Cancer Center was recognized as a 2019 Guardian of Excellence specifically for Patient Experience by Press Ganey, a US-based healthcare company. The recognition designates organizations "who have reached the 95th percentile for patient experience" in 2019 data reviews, and represents Moffitt's fifth consecutive receipt of the award.
- 'Moffitt Cancer Center appoints machine learning department chair': On July 21, 2019, Becker's Hospital Review reported Moffit Cancer Center's appointment of data scientist Issam El Naqa, PhD, as the head of the center's first machine learning department. The department is intended to boost cancer research prospects with machine learning and algorithms, allowing researchers to evaluate large volumes of data in record time.
Moffitt Cancer Center Features and Competitive Advantages
- Moffitt Cancer Center products, services, and features:
- Moffitt offers cancer patients a wide variety of programs and support services, including Advance Care Planning, which evaluates future preferences in the event that patients are unable to speak for themselves, and a Cancer Survivorship Clinic, which addresses difficulties that manifest after the completion of treatment. The center also has programs focused specifically on young adults, spiritual care, families of patients, language services, LGBTQ+ patients, and nutrition.
- Moffitt features Tobacco Treatment programs designed to help cancer patients with tobacco addictions. The center also has a Vitality Clinic, which specifically addresses cancer-related anorexia-cachexia, a common stress response of self-starvation.
- New and established patients of Moffitt Cancer Center, and non-patients seeking second opinions, have the option to speak with Moffitt cancer experts via Virtual Visits on face-to-face video chat applications. Computers and mobile devices may be used by patients to connect with oncologists, surgeons, nurses, and non-medical providers like genetic counselors and nutritionists.
- A variety of amenities are offered to patients of Moffitt Cancer Center, including a salon, a pharmacy, and a young adult lounge. The center also features Integrative Medicine Services such as massage and yoga, and Supportive Care Medicine services to help with a variety of "physical, emotional, social or spiritual" issues.
- Competitive advantages of Moffitt Cancer Center:
- Moffitt Cancer Center uses predictive modeling, genomics, immunotherapy, and other advanced therapeutic techniques to anticipate and treat the spread of cancers. Moffitt is a leading research center, one of the few with specialists in fields like evolutionary biology and mathematical oncology, working to establish advances such as the promising CAR T-cell therapy, in which a patient's own immune system is used to attack certain cancerous cells.
- The center partners with several other facilities to enhance patient experience, such as South Florida's Memorial Healthcare System and the Radiation Oncology Department of Morton Plant Hospital in Pinellas, Florida.
- Moffitt Cancer Center is home to the Moffitt Medical Group (MMG), an interdisciplinary practice of oncologists and other physicians focused on cancer care. The team of experts is the largest of its kind in Florida, and oversees approximately 30 cancer-related programs and services.
- The center boasts five robust research programs, including Cancer Biology and Evolution, Cancer Epidemiology, Chemical Biology and Molecular Medicine, Health Outcomes and Behavior, and Immunology. As of January 2020, the Cancer Biology and Evolution research program and the Immunology program each work to treat over 1,000 patients each year.
Cancer Champions Overview and Recent News
- Overview of Cancer Champions:
- Cancer Champions was founded by Dana Hutson, a "private advocate" who offers guidance and support to cancer patients and families overburdened by the volume and complexity of information in the healthcare system.
- Ms. Hutson has more than two decades of oncology-focused experience in the healthcare marketing field and has served on several patient advocacy boards.
- Cancer Champions advertises itself as "combining oncology knowledge with genuine compassion" to assist cancer patients in easing their anxieties and uncertainties surrounding cancer diagnoses and treatments.
- Dana Hutson frequently references her own personal experience with helping several loved ones through various cancer journeys in promotional materials.
- Mentions of Moffitt Cancer Center in recent news articles:
- 'CCN (Cancer Cliff Notes) with Jenn Cochran, Episode 19 Dana Hutson': On September 18, 2019, Cancer Champions founder Dana Hutson was featured in a cancer-focused wellness podcast called Cancer Cliff Notes. In the interview, Ms. Hutson discussed the value of private advocacy for cancer patients and referenced relevant informational resources.
- 'Dana Hutson — Highway to Heart, Humor, and Honesty in Healthcare Interview': On February 13, 2020, Dana Hutson participated in an audio interview which will be transcribed into a chapter of 'Highway to Heart, Humor, and Honesty in Healthcare'. The book is a charitable anthology and will be released by mid-2020.
- 'Living with Cancer: Discovering Transformative Support Along the Way': On September 19, 2019, Dana Hutson facilitated a discussion at a Rowan Tree facility about hardships, transformations, and support in dealing with cancer. The discussion touched on topics such as supportive communication, gaps in cancer support, navigating insurance policies, useful support services, employer support, ending treatment, and returning to work.
Cancer Champions Features and Competitive Advantages
- Cancer Champions products, services, and features:
- Through Cancer Champions, Ms. Hutson offers cancer patients free fifteen-minute initial phone consultations and more extensive ninety-minute consultations, which cost $180. In the consultations, Ms. Hutson offers supportive listening, answers cancer-related questions, and works with patients to develop personalized roadmaps for their cancer journeys.
- The Cancer Champions website features a free checklist called '7 Questions to Ask Your Oncologist'. The list is intended to help patients gain important and useful information during doctor's visits following their cancer diagnoses.
- Dana Hutson provides customized "speaking services" to help audiences discover practical ways to help loved ones, locate relevant resources, and prevent "common hospital hazards".
- Ms. Hutson also offers her services to clients requesting her presence as an advocate at relevant doctor's appointments. According to Cancer Champions' website, Ms. Huston may accompany clients in-person or virtually, depending on location.
- Competitive advantages of Cancer Champions:
- One of the main competitive advantages cited by Cancer Champions is that, in addition to her 24 years of experience in oncology-focused marketing and advocacy, founder Dana Hutson is loyal only to clients and their loved ones, "unlike hospital navigators or insurance advocates".
- Ms. Hutson offers clients thoroughly-screened medical information, sifted and deciphered to provide "only the most vital" details in easy-to-digest formats. She also asserts that she will help patients "know what [they] don't know", allowing clients to feel more empowered and make better decisions.
- In its personalized cancer journey roadmaps, Cancer Champions works with patients to incorporate their personal goals and offer a variety of treatment options, clinical trials, and sources for second opinions. After goal-setting, Cancer Champions collaborates with clients' healthcare teams to provide guidance.
- Through Cancer Champions, Ms. Hutson also works with cancer patients and their loved ones to facilitate difficult conversations and decision-making processes. In the discussions, Ms. Hutson provides complex healthcare information in "digestible pieces" and helps families evaluate care options together.
The recovery journey of cancer patients in the United States features four to five main stages, including diagnosis, treatment-related decision-making, active treatment, end of treatment, and in some cases, recurrence. In each stage, American cancer patients report pain points related to feelings of uncertainty and being overwhelmed with options, which patient advisory services may help to alleviate. In the United States, even cancer patients with health insurance may incur unplanned and substantial medical expenses, adding significant challenges to the already-difficult process of coping with cancer diagnosis and treatment.
The Recovery Journey of US Cancer Patients
- The first stage of the cancer journey for US patients comes with diagnosis, which reportedly comes with feelings of shock and crisis, feelings of "betrayal" by one's own body, fears surrounding incapacitation and death, and uncertainty about how to inform loved ones. After diagnosis, only 15% of American patients surveyed reported receiving information about "common stress and crisis reactions".
- Among those diagnosed with cancer, patients reacting with humor and acceptance rather than denial were more likely to report subsequent lower levels of distress. 82% of patients reported feeling more hopeless when others used euphemisms, like "growth" instead of the word "cancer", to describe their situations. To effectively communicate with patients who recently received diagnoses, experts suggest that patient advisory services use strategies such as avoiding euphemisms, empathizing with and validating strong emotions, providing relevant information and personal stories, and focusing on things patients can control.
- The next stage of cancer journeys in America involves making treatment decisions, which can overwhelm patients with conflicting and frightening information, uncertainty about the effectiveness of treatment options, and difficulties finding specific information. Among cancer patients making treatment decisions, some patients reported periods of "self-censorship", in which they intentionally avoid negative information, and female patients reported valuing personal experience of other cancer survivors over medical information in decision-making.
- For patient advisers working with cancer patients making treatment decisions, experts recommend strategies such as the use of personal survivor stories, encouraging patients to connect with others affected by cancer, and softening initial treatment details until patients are receptive. Among cancer patients making treatment decisions surveyed by the Advisory Board, 75% reported wanting access to "relaxation therapies", 45% wanted access to fitness classes, 44% wanted information about medicinal cannabis, and 39% wanted access to "creative expression therapies".
- The following stage of the American cancer journey is that of active treatment, which brings patient concerns such as the effectiveness of therapy, anxiety and physical discomfort due to treatment side effects, and "staggering medical expenses". In the United States, even those with health insurance may experience financial devastation due to the expense of medical care and related non-medical expenses, such as child care and losses of income.
- To assist cancer patients during this stage, experts suggest that patient advisers and advocates focus on "building hopefulness", "benefit finding", and encouraging good humor. Experts also recommend acknowledging the physical discomforts of treatments, providing practical tools for coping with physical and psychological side effects of therapy, encouraging honesty and connection with other cancer patients, and promoting self-care.
- For some Americans, the final stage of the cancer journey involves the end of active treatment, during which patients report feeling uncertainty about recurrence, uncertainty about whether they are making the right choices, ongoing medical issues, and "psychosocial adjustments". Experts refer to several common myths among cancer survivors after treatment, including feelings that one should feel more celebratory, that one should feel well, that one should be back to their pre-cancer self, and that one should have no need for continued external support.
- Research has indicated that anxiety is more likely to be a problem for long-term cancer survivors and spouses than depression. Experts suggest that patient advisers for those exiting treatment should provide patients with strategies to cope with living in uncertainty, acknowledge the difficulties associated with transitioning back to normal life, and use personal stories of other survivors.
- For other US cancer patients, recurrence represents an additional stage of the cancer journey. Patients experiencing recurrence report feelings of uncertainty about how much longer they may have to live and uncertainty about whether they want to seek treatment for a second time.
- According to experts, a common myth about recurrence of cancer in US patients is that it is more distressing than initial diagnosis, while research actually indicates that surviving an initial battle with cancer develops relevant coping mechanisms that help patients cope better with recurrence. To assist patients experience recurrence of cancer, experts suggest that patient advisory teams assess what previously worked for patients, help patients make treatment decisions based on what they hope to accomplish, and focus on encouraging self-care.