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In 2016, the [[Mayo Clinic]] named Loew a keynote speaker at the XXX, to be held in XXX in November 2016. HERE...
In 2016, the [[Mayo Clinic]] named Loew a keynote speaker at the XXX, to be held in XXX in November 2016. HERE...

In June 2016, Loew was invited to be an "ignite speaker" at the [[Cancer Moonshot 2020]] MORE HERE...


Large pharmaceutical companies have worked with Inspire on research projects that focus on rare disease populations of rare disease patients or populations of patients who have advanced disease, such as metastatic lung cancer. Novartis Institutes for Biomedical Research, the research arm of [[Novartis]], made a presentation at the Multinational Association of Supportive Care in Cancer (MASCC) International Symposium on the topic, Perceptions of stage IV NSCLC patients and caregivers regarding severity of symptoms and willingness to participate in supportive care trials.<ref> [http://corp.inspire.com/press/releases/MASCC-poster.pdf "Perceptions of stage IV NSCLC patients and caregivers regarding severity of symptoms and willingness to participate in supportive care trials] 28 June 2012</ref>
Large pharmaceutical companies have worked with Inspire on research projects that focus on rare disease populations of rare disease patients or populations of patients who have advanced disease, such as metastatic lung cancer. Novartis Institutes for Biomedical Research, the research arm of [[Novartis]], made a presentation at the Multinational Association of Supportive Care in Cancer (MASCC) International Symposium on the topic, Perceptions of stage IV NSCLC patients and caregivers regarding severity of symptoms and willingness to participate in supportive care trials.<ref> [http://corp.inspire.com/press/releases/MASCC-poster.pdf "Perceptions of stage IV NSCLC patients and caregivers regarding severity of symptoms and willingness to participate in supportive care trials] 28 June 2012</ref>

Revision as of 22:57, 26 June 2016

  • Comment: Passing mentions in reliable sources can be used to verify content in the draft, but do not serve to demonstrate topic notability. North America1000 22:23, 12 May 2016 (UTC)
  • Comment: I'm still not confident about accepting this, please add any additional amount of in-depth third-party news sources overall, but please no press releases or trivial passing mentions. SwisterTwister talk 20:25, 9 May 2016 (UTC)
  • Comment: Still needs any additional amount of in-depth third-party news sources overall, but no press releases or trivial passing mentions. SwisterTwister talk 05:34, 4 May 2016 (UTC)

Inspire is an Arlington, VA-based company that builds and manages online support groups for patients and caregivers, and it connects patients to life science companies for the purpose of research.

Overview

Founded in 2005, the company serves hundreds of thousands of patients and caregivers in several hundred online support groups. These groups are 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. [1]

In the American Medical Association Journal of Ethics, author Laura Solberg, JD, MTS, in citing Inspire, said that "online health communities can serve as the birthplace for beneficial social movements, such as 'participant-led research,' in which 'participants are the leading force in the initiation or conduct of research projects.'”[2]

History

Web and digital health entrepreneur Brian Loew, along with colleagues Amir Lewkowicz and Walter Wlodarczyk, founded Inspire in 2005. It was first known as ClinicaHealth.

PharmaVOICE magazine said of Loew, "By creating a platform that allows patients who are hurting physically and emotionally both gain medical information and communicate with others who share their experiences, Mr. Loew has provided a unique, invaluable service in an overlooked arena of engagement, and patients everywhere are thanking him for it. A service that combines factual information sharing with community building could only be created by a true visionary — someone who can see beyond the common one-dimension of the medical field and understand the power of human experience and connection toward healing. Inspire transforms patients from isolated, oft ill-informed individuals into connected, educated, and empowered community members."[3]

As of Spring 2016, the Inspire community had 750,000 members, more than 275,000 of whom are affected by cancer. [4] Inspire had about 80,000 members in 2008. [5]

Partnerships with nonprofit advocacy organizations

Inspire partners with multiple nonprofit patient advocacy organizations, such as National Osteoporosis Foundation, National Psoriasis Foundation, Arthritis Foundation, Cancer Research Institute, American Lung Association, Ovarian Cancer Research Fund 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, Bladder Cancer Advocacy Network, American Liver Foundation, Encephalitis Global, Neurofibromatosis Network, American Sexual Health Association, Ehlers-Danlos Society, and the ALS Association to provide online communities for the nonprofit organizations.[6]


Products and services

While Inspire’s online communities are services provided free to the public, Inspire’s revenue model involves providing paid services, primarily 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.

Applied Clinical Trials, an industry publication, said life science companies were turning to healthcare social networks to recruit for clinical trials, noting that patient communities "self-select for specific conditions, are highly engaged, highly motivated to share information, and eager to advance treatment." The article quoted Loew as saying, “Online patient communities have given us an important piece of the puzzle. People in a community are more pre-disposed to participate in a trial than a random population of patients.”[7]

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.

Awards and recognition

In 2014 and 2016, PharmaVOICE named Brian Loew to the PV100 in recognition of people who “provide inspiration to their peers, colleagues, and companies through their innovative and motivational approaches to addressing the industry’s myriad challenges.”[3] MORE HERE...

In 2016, the Mayo Clinic named Loew a keynote speaker at the XXX, to be held in XXX in November 2016. HERE...

In June 2016, Loew was invited to be an "ignite speaker" at the Cancer Moonshot 2020 MORE HERE...

Large pharmaceutical companies have worked with Inspire on research projects that focus on rare disease populations of rare disease patients or populations of patients who have advanced disease, such as metastatic lung cancer. Novartis Institutes for Biomedical Research, the research arm of Novartis, made a presentation at the Multinational Association of Supportive Care in Cancer (MASCC) International Symposium on the topic, Perceptions of stage IV NSCLC patients and caregivers regarding severity of symptoms and willingness to participate in supportive care trials.[8]

GlaxoSmithKline has presented with Inspire at medical meetings on pharmacoeconomic research it is developing in collaboration with Inspire. One example is the session, Social Listening for Safety Outcomes & Pharmacoeconomic Considerations: Has the Time Come?, at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR).[9] STANFORD SESSION the 2016 Medicine X conference sponsored by the Stanford University School of Medicine. HERE...

Moonshot meeting HERE...

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."[10]

Glaser was referring to a story detailed in the Wall Street Journal in which women with a rare heart disorder spontaneous coronary artery dissection, or SCAD, self-organized on Inspire's WomenHeart Support Community to conduct research among themselves that sparked new Mayo Clinic studies into the possible causes of SCAD.[11] National Public Radio, in reporting on the story, said, "Through their personal Facebook pages, chat rooms and message boards, patients are recruiting each other in a kind of virtual word-of-mouth."[12]

Sharonne N. Hayes, associate professor of medicine and cardiovascular diseases, founder of the Women’s Heart Clinic, and director of diversity and inclusion at the Mayo Clinic, referenced Inspire in a column about the significant and groundbreaking nature of the SCAD research on Inspire. "Perhaps even more gratifying is the explosion of interest in our methods among both colleagues and other patient groups who hope to leverage the power of the patient to advance the science for other conditions," she wrote on the KevinMD blog of Kevin Pho. "While a more formal multicenter registry and prospective clinical trials will ultimately be necessary to fully understand SCAD, this unique model involving self-organized patients provides an excellent option for a virtual multicenter registry and an option for other patient-investigator partners to consider."[13]

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), which is signifcant because the guidelines are "often a first stop for an oncologist trying to develop a treatment plan after a patient's diagnosis."[14] A National Public Radio story said that an NCCN representative as saying that "most suggestions for guideline changes come from the major cancer centers that make up the network. A smaller number come from the drug industry or from established advocacy groups. A proposal from an ad hoc patient group like this one is 'not so common, but still very welcome.'"[15]

Loew and Lewkowicz are regularly quoted on topics of healthcare social media, and the emerging ways that pharmaceutical and biotech companies are leveraging the insights of patients in online communities. They have spoken at such conferences as Stanford Medicine’s Medicine X[16], the Drug Information Association (DIA) conference, and the Mayo Clinic Social Media Summit.

Inspire has won several Digital Health Awards, including a silver award in the "Forum/Message Board" category in 2013.[17]

References

  1. ^ Levingston, Suzanne Allard. https://www.washingtonpost.com/national/health-science/heres-how-patients-can-take-a-larger-part-in-their-own-care/2015/11/30/e4657544-6ad2-11e5-b31c-d80d62b53e28_story.html "Here’s how patients can take a larger part in their own care] 30 November 2015.
  2. ^ Solberg, Laura. http://journalofethics.ama-assn.org/2014/04/stas1-1404.html "The Benefits of Online Health Communities] April 2014.
  3. ^ a b "Brian Loew: Connecting patients, saving lives". PharmaVOICE. July–August 2014. p. 45.
  4. ^ Moore, Charles. Online Immunotherapy Support Community Launched by Cancer Research Institute and Inspire 13 April 2016
  5. ^ Roush, Wade. "Online Communities Meet Clinical Trials: Inspire’s Co-Founder on Social Networking, Health 2.0, and Trust 11 December 2008
  6. ^ Haynes, V. Dion. "Online health sites tap into social networking 19 October 2009
  7. ^ Gebhart, Fred. "New Technologies Close the Recruitment Gap 15 September 2014.
  8. ^ "Perceptions of stage IV NSCLC patients and caregivers regarding severity of symptoms and willingness to participate in supportive care trials 28 June 2012
  9. ^ "Social Listening for Safety Outcomes & Pharmacoeconomic Considerations: Has the Time Come? 24 May 2016.
  10. ^ Glaser, John. "Five Reasons to 'Like' Patients’ Use of Social Media 11 April 2016.
  11. ^ Winslow, Ron. "When Patients Band Together: Using Social Networks To Spur Research for Rare Diseases; Mayo Clinic Signs On 30 August 2011.
  12. ^ National Public Radio."Patients Find Each Other Online To Jump-Start Medical Research 28 May 2012.
  13. ^ Hayes, Sharonne, MD. "The untapped potential of patient-initiated research in studying rare diseases 2 July 2012.
  14. ^ Hobson, Katherine. "How A Group Of Lung Cancer Survivors Got Doctors To Listen 1 March 2015.
  15. ^ Hobson, Katherine. "How A Group Of Lung Cancer Survivors Got Doctors To Listen 1 March 2015.
  16. ^ James, Julia. [1], "How to grow a healthy social network 10 April 2012.
  17. ^ "Digital Health Awards
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