Cancer patient blogs: How patients, clinicians, and researchers learn from rich narratives of illness

Blogs written by cancer patients can offer deep insights to other patients about what to expect in the course of illness and treatment, can provide information to oncologists and other clinicians about patient experiences outside of appointments, and can increase researcher awareness of treatment effects and alternatives. While many forms of social media and online communities are used by patients, blogs are unique in that they provide a narrative of many aspects of disease and treatment, offering a comprehensive view of the disease experience delivered in installments, often from diagnosis through life as a survivor. However, the impact of patient blogs has been modest thus far because patient blogs are spread across the internet and, with no central repository of patient blogs, opportunities for analysis are limited. Given the life-altering and potentially devastating impact of cancer on people's lives, we seek to develop a tool that will analyze tens of thousands of patient-authored blogs to improve cancer patient care.

[1]  R. Dellavalle,et al.  Social internet sites as a source of public health information. , 2009, Dermatologic clinics.

[2]  G. Kelloff,et al.  Prostate cancer prevention: investigational approaches and opportunities. , 1996, Cancer research.

[3]  Jenine K. Harris,et al.  Local Health Department Use of Twitter to Disseminate Diabetes Information, United States , 2013, Preventing chronic disease.

[4]  Michael R Hamblin,et al.  CA : A Cancer Journal for Clinicians , 2011 .

[5]  J. Pennebaker Telling Stories: The Health Benefits of Narrative , 2000, Literature and medicine.

[6]  D. B. Morris Narrative, Pain And Suffering (Progress in Pain Research and Management, Volume 34) , 2005 .

[7]  J. Hornaday,et al.  Cancer Facts & Figures 2004 , 2004 .

[8]  Eleftherios Mylonakis,et al.  Google trends: a web-based tool for real-time surveillance of disease outbreaks. , 2009, Clinical infectious diseases : an official publication of the Infectious Diseases Society of America.

[9]  Steve Wheeler,et al.  Wikis, blogs and podcasts: a new generation of Web-based tools for virtual collaborative clinical practice and education , 2006, BMC medical education.

[10]  Isolde K. Anderson The Uses and Gratifications of Online Care Pages: A Study of CaringBridge , 2011, Health communication.

[11]  K. Chui,et al.  Communicating the Experience of Chronic Pain and Illness Through Blogging , 2012, Journal of medical Internet research.

[12]  M. Baernholdt,et al.  Blogging Through Cancer: Young Women’s Persistent Problems Shared Online , 2013, Cancer Nursing.

[13]  S. Ziebland,et al.  Health and Illness in a Connected World: How Might Sharing Experiences on the Internet Affect People's Health? , 2012, The Milbank quarterly.

[14]  David Schlossberg,et al.  Clinical Infectious Disease: Clinical Syndromes – Respiratory Tract , 2008 .

[15]  John O'Mullane,et al.  Who's talking about breast cancer? Analysis of daily breast cancer posts on the internet. , 2013, Breast.

[16]  D. B. Morris,et al.  Narrative, Pain, and Suffering , 2005 .

[17]  Sergey Brin,et al.  The Anatomy of a Large-Scale Hypertextual Web Search Engine , 1998, Comput. Networks.

[18]  Sujin Kim,et al.  Content analysis of cancer blog posts. , 2009, Journal of the Medical Library Association : JMLA.

[19]  L. Schover,et al.  The impact of breast cancer on sexuality, body image, and intimate relationships , 1991, CA: a cancer journal for clinicians.

[20]  D. Chung,et al.  Characteristics of cancer blog users. , 2007, Journal of the Medical Library Association : JMLA.

[21]  J. Frost,et al.  Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another’s Data , 2008, Journal of medical Internet research.