 Logo of the company Inspire. | |
Type of site | Social networking service |
|---|---|
| Available in | English |
| Created by | Brian Loew Amir Lewkowicz Walter Wlodarczyk |
| URL | inspire |
| Registration | Yes |
| Users | 2,000,000 (2020) |
| Launched | January 2005 (as Clinica Health) |
| Current status | Active |
Inspire is an Arlington, Virginia-based healthcare social network. It builds and manages online health communities for patients and caregivers, and connects patients to life science companies for the purpose of research.
Founded in 2005, the company serves millions of patients and caregivers in several hundred online support groups. As of the end of 2020, Inspire had more than two million registered members. [1] [2] [3] These online groups are mostly organized around a single condition, such as psoriasis, ovarian cancer, or lung cancer.
Online health communities like Inspire are referenced as components of the empowered patient, or e-patient movement. [4] [5] [6]
Brian Loew founded Inspire. It was first known as ClinicaHealth until March 2008. [7] In 2022, the Inspire community had over 2.5 million registered members, more than 40% of whom are affected by cancer. Inspire had about 80,000 members in 2008. [8]
Early employees include Amir Lewkowicz, Walter Wlodarczyk, Beth McNaughton, and contributors Nate Shue and David Marshall.
Inspire partners with multiple nonprofit patient advocacy organizations, such as the Bladder Cancer Advocacy Network, National Osteoporosis Foundation, American Lung Association, Ovarian Cancer Research Alliance, Genetic Alliance, Kidney Cancer Association, Scleroderma Foundation, Alzheimer's Foundation of America, Tuberous Sclerosis Alliance, Men's Health Network, WomenHeart: The National Coalition for Women with Heart Disease, ThyCa: Thyroid Cancer Survivors' Association, American Liver Foundation, Lupus Foundation of America, Encephalitis Global, Neurofibromatosis Network, American Sexual Health Association, Ehlers-Danlos Society, and the ALS Association to provide online communities for the nonprofit organizations. [2]
Inspire generates company revenue from market research and promotional services to pharmaceutical companies. Inspire's market research services include online surveys, user-generated content analysis, and moderated online private research communities. [2]
Examples of promotional projects that Inspire would provide on behalf of a pharmaceutical client include branded or unbranded banner ads that Inspire serves in its online communities and the delivery of targeted, permission-based emails to community members. [2]
Healthcare companies and institutions have worked with Inspire on research projects that focus on rare disease populations or populations of patients who have advanced disease, such as metastatic lung cancer. [9]
In October 2020, Precision Oncology News, a publication owned by GenomeWeb, detailed a research project involving Inspire, Pfizer and Boston Children's Hospital. [10] The article stated how Stefan McDonough, executive director of genetics at Pfizer, described the Inspire platform as "an extraordinary resource" because patients are already appropriately consented and are eager to share their medical information to advance treatments. "I would be wearing out multiple sets of shoes going from investigator to investigator, clinician to clinician" to collect this sort of patient data, McDonough was quoted as saying.
Earlier in 2020, Inspire data was cited in a BJU International research paper about the effect of prostate cancer on sleep. [11]
In January 2021, Marina Ness, Inspire's Director of Research, was an author on a paper [12] in European Urology Open Science, the Open Access journal of the European Urology family.
In November 2019, Inspire teamed with Mayo Clinic on a Journal of Medical Internet Research study involving the use of statins, and memory loss. [13]
Earlier in 2019, an Inspire researcher was an author on a Journal of Medical Internet Research paper with researchers from the Food and Drug Administration. [14] Also in 2019, Inspire collaborated with Isabelle Boutron, a professor of epidemiology at the Paris Descartes University and head of the INSERM- METHODS team within the Centre of Research in Epidemiology and Statistics (CRESS), on BioMed Central," a study about "spin" in healthcare news. [15]
In April 2018, an Inspire data scientist was an author of a Nature Genetics correspondence [16] about ways to close the"terminology gap" between medical professionals and patients. Also in 2018, Inspire collaborated with ProPublica and Memorial Sloan Kettering Cancer Center in research that led to a paper in the Journal of Oncology Practice. [17]
Earlier that year, JAMA Oncology published a research letter, [18] based on research involving Stanford University and Inspire. National Public Radio (NPR) reported on the Stanford/Inspire study with the article, How Social Media Can Reveal Overlooked Drug Reactions.
In 2015, members of Inspire's lung cancer group self-organized and submitted a request that helped changed treatment guidelines from the National Comprehensive Cancer Network (NCCN). [19]
Health technology industry executive John Glaser cited Inspire in an industry magazine column citing the importance of healthcare social networks to clinical research. "In addition to helping patients find and take advantage of clinical trials, health care social networks also provide an opportunity for participant-led research," Glaser wrote, "in which members initiate new fields of study. For instance, Inspire members with spontaneous coronary artery dissection persuaded researchers at the Mayo Clinic to launch new research into the condition, which led to the creation of a SCAD registry, a key step in the further study of this rare disease. Indeed, there is tremendous potential for online patient communities to contribute to the project of a continuously learning health system." [20]
In December 2020, the nonprofit organization the Invisible Disabilities Association honored Brian Loew with the 2020 Corporate Award for his dedication to patient advocacy organizations. [21]
The Washington Post profiled Loew in April 2017 around the time Inspire's membership surpassed one million patients and caregivers. [2] The article states, "Loew and his company are attached to the surge of patient assertiveness, with more people questioning their health care and taking more of the responsibility out of the hands of professionals."
Brian Loew has been named to PharmaVOICE magazine's "PharmaVOICE 100" three times, in 2014, 2016 and 2017, for his contributions to the life sciences industry." [22] As of 2020, Loew sits on the boards of directors of the Robert Packard Center for ALS Research at Johns Hopkins, and New Jersey Goals of Care. [23]
The Mayo Clinic named Amir Lewkowicz as a keynote speaker at its Healthcare Social Media Summit 2016 in Melbourne, Australia. [24]
Pfizer Inc. is an American multinational pharmaceutical and biotechnology corporation headquartered at The Spiral in Manhattan, New York City. The company was established in 1849 in New York by two German entrepreneurs, Charles Pfizer (1824–1906) and his cousin Charles F. Erhart (1821–1891).
Palliative care is an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex, and often terminal illnesses. Within the published literature, many definitions of palliative care exist. The World Health Organization (WHO) describes palliative care as "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain, illnesses including other problems whether physical, psychosocial, and spiritual". In the past, palliative care was a disease specific approach, but today the WHO takes a broader patient-centered approach that suggests that the principles of palliative care should be applied as early as possible to any chronic and ultimately fatal illness. This shift was important because if a disease-oriented approach is followed, the needs and preferences of the patient are not fully met and aspects of care, such as pain, quality of life, and social support, as well as spiritual and emotional needs, fail to be addressed. Rather, a patient-centered model prioritizes relief of suffering and tailors care to increase the quality of life for terminally ill patients.
In medicine, proton therapy, or proton radiotherapy, is a type of particle therapy that uses a beam of protons to irradiate diseased tissue, most often to treat cancer. The chief advantage of proton therapy over other types of external beam radiotherapy is that the dose of protons is deposited over a narrow range of depth; hence in minimal entry, exit, or scattered radiation dose to healthy nearby tissues.
Abarelix, sold under the brand name Plenaxis, is an injectable gonadotropin-releasing hormone antagonist which is marketed in Germany and the Netherlands. It is primarily used in oncology to reduce the amount of testosterone made in patients with advanced symptomatic prostate cancer for which no other treatment options are available.
Nicholas J. Vogelzang was a medical oncologist with Comprehensive Cancer Centers of Nevada (CCCN). He serves as medical director of the Research Executive Committee and Associate Chair of the Developmental Therapeutics and Genitourinary Committees for US Oncology Research. His research interests include clinical trials for genitourinary malignancies and mesothelioma.
Psycho-oncology is an interdisciplinary field at the intersection of physical, psychological, social, and behavioral aspects of the cancer experience for both patients and caregivers. Also known as psychiatric oncology or psychosocial oncology, researchers and practitioners in the field are concerned with aspects of individuals' experience with cancer beyond medical treatment, and across the cancer trajectory, including at diagnosis, during treatment, transitioning to and throughout survivorship, and approaching the end-of-life. Founded by Jimmie Holland in 1977 via the incorporation of a psychiatric service within the Memorial Sloan Kettering Cancer Center in New York, the field has expanded drastically since and is now universally recognized as an integral component of quality cancer care. Cancer centers in major academic medical centers across the country now uniformly incorporate a psycho-oncology service into their clinical care, and provide infrastructure to support research efforts to advance knowledge in the field.
An e-patient is a health consumer who participates fully in their own medical care, primarily by gathering information about medical conditions that impact them and their families, using the Internet and other digital tools. The term encompasses those who seek guidance for their own ailments, and the friends and family members who research on their behalf. E-patients report two effects of their health research: "better health information and services, and different, but not always better, relationships with their doctors."
"Health 2.0" is a term introduced in the mid-2000s, as the subset of health care technologies mirroring the wider Web 2.0 movement. It has been defined variously as including social media, user-generated content, and cloud-based and mobile technologies. Some Health 2.0 proponents see these technologies as empowering patients to have greater control over their own health care and diminishing medical paternalism. Critics of the technologies have expressed concerns about possible misinformation and violations of patient privacy.
Geriatric oncology is a branch of medicine that is concerned with the diagnosis and treatment of cancer in the elderly, usually defined as aged 65 and older. This fairly young but increasingly important subspecialty incorporates the special needs of the elderly into the treatment of cancer.
Oncology is a branch of medicine that deals with the study, treatment, diagnosis, and prevention of cancer. A medical professional who practices oncology is an oncologist. The name's etymological origin is the Greek word ὄγκος (ónkos), meaning "tumor", "volume" or "mass". Oncology is concerned with:
In general, quality of life is the perceived quality of an individual's daily life, that is, an assessment of their well-being or lack thereof. This includes all emotional, social and physical aspects of the individual's life. In health care, health-related quality of life (HRQoL) is an assessment of how the individual's well-being may be affected over time by a disease, disability or disorder.
Simon J. Hall is an American researcher who is the Associate Professor and Kyung Hyun Kim, M.D. Chair of Urology and Assistant Professor, Department of Gene and Cell Medicine at The Mount Sinai School of Medicine, as well as the Director of the Barbara and Maurice Deane Prostate Health and Research Center at The Mount Sinai Medical Center, both in New York City.
An informal or primary caregiver is an individual in a cancer patient's life that provides unpaid assistance and cancer-related care. Caregiving is defined as the processing of assisting someone who can't care for themselves, which includes physical, mental, emotional, social, and spiritual needs. Due to the typically late onset of cancer, caregivers are often the spouses and/or children of patients, but may also be parents, other family members, or close friends. Taking care of family members at home is a complicated experience. The relationships involved constantly shift and change, in expected and unexpected ways. The expected or expected changes can negatively affect physical health, emotions, social life, and spiritual well-being of the caregiver. Informal caregivers are a major form of support for the cancer patient because they provide most care outside of the hospital environment. This support includes:
The Pancreatic Cancer Action Network (PanCAN) is a United States-based 501(c)(3) charity that funds research, provides patient/caregiver support, conducts community outreach and advocates for increased federal research funding for those affected by pancreatic cancer.
OpenNotes is a research initiative and international movement located at Beth Israel Deaconess Medical Center.
Margaret Ruth McCorkle FAAN, FAPOS was an American nurse, oncology researcher, and educator. She was the Florence Schorske Wald Professor of Nursing at the Yale School of Nursing.
Brain Tumor Social Media (#BTSM) is a patient and care partner-run, grassroots Twitter community. The Twitter account @BTSMchat hosts bi-monthly tweet chats for the #BTSM community and consistently trends among the top 15 of disease-related tweet chats. A study published in 2020 revealed the hashtag was most commonly used by brain tumor patients (33.13%), along with patient advocacy organizations (7.01%), care partners (4.63%), and clinicians (3.63%) and researchers (3.37%) specializing in brain tumors and brain cancers.
Declan G. Murphy, FRACS, FRCS, is a urologist, director of the unit for genitourinary oncology and robotic surgery at the Peter MacCallum Cancer Centre in Melbourne, Australia, professor at the Sir Peter MacCallum Department of Oncology at the University of Melbourne, and associate editor of the British Journal of Urology International. In 2010 he introduced robotic surgery for urology to the public sector health services in Victoria, Australia.
William Pao is an oncologist and Executive Vice President and Chief Development Officer of Pfizer. He was previously the head of Pharma Research and Early Development (pRED) at Roche and a professor of medicine at the Vanderbilt University Medical Center. He is best known for his work in molecular oncology and cancer genomics.
Psychosocial distress refers to the unpleasant emotions or psychological symptoms an individual has when they are overwhelmed, which negatively impacts their quality of life. Psychosocial distress is most commonly used in medical care to refer to the emotional distress experienced by populations of patients and caregivers of patients with complex chronic conditions such as cancer, diabetes, and cardiovascular conditions, which confer heavy symptom burdens that are often overwhelming, due to the disease's association with death. Due to the significant history of psychosocial distress in cancer treatment, and a lack of reliable secondary resources documenting distress in other contexts, psychosocial distress will be mainly discussed in the context of oncology.