How online patient communities are changing the face of cancer care
By Marie Ennis – O’Connor Twitter @JBBC
There is a revolution occurring in healthcare, perhaps most noticeably in oncology; the rapid pace of new discoveries, advent of genomics, targeted therapies, telemedicine, and personalized medicine, alongside growing access to internet-based educational and support resources is creating a new era in medicine. The Information Age is collapsing the boundary fences around previously closed information domains such as medicine. Patients can now gain access to citations of more than 12 million medical articles online, allowing them to build a base of information that wasn’t previously possible.
This has given rise to the growth of the e-Patient movement, a movement in which patients and their caregivers are becoming engaged in learning more about their treatment options, incorporating what they learn into their treatment decisions, and even helping to shape these options through accelerating research and improving care. They are smart, motivated and experienced patients with an impressive and up-to-date knowledge of the best sources, centres, treatments, research, and specialists for their condition. They go online to explore treatment options their clinicians did not mention, to double-check their diagnoses, to learn about alternative or complementary treatments, to compare the treatments their doctors suggest with those recommended by patients at other treatment centres, and to compare their current clinicians with other providers. E-Patients who have “studied up” on their diseases online say they have less fear of the unknown and more confidence in their ability to deal with whatever the future may bring—because of what they have learned during their online health research.1
This information seeking is motivated by a desire to have as much information as possible, and in some cases dissatisfaction with the insufficient information given by health care providers. In one study, 39% of persons with breast cancer indicated that they “wished that they had help with knowing what questions to ask.” 2 Satisfaction with information has been shown to correlate with quality of life,3 and patients who feel satisfied with the adequacy of information given are more likely to feel happy with their level of participation in the overall process of decision making.
While health providers may question the quality of information available online, the research that has been conducted to date finds little evidence to support the notion that information found on the Web is worse than in other media. Furthermore good communication and trust between patients and health care professionals can obviate any potential harm. Healthcare providers should recognize that many patients would like guidance as they turn to the Internet for medical information. Providers are in a position to utilize quality assessment tools and existing resources that facilitate referring patients to authoritative, commercial-free, patient-oriented medical information on the Internet. It is encouraging to see those that have embraced the opportunity to assist patients in finding and interpreting reliable and up to date information, by curating their own caches of health research through their social media accounts and websites.
Dissatisfaction with information is not the only reason why patients turn to the Web; patients may be happy with the amount of information they receive but still wish to reassure themselves that the information they have is sufficient. In addition, access to practical and experiential information from other patients is highly valued. Patients are taking note of peer recommendations about where and from whom to receive treatment, which specific tests and treatment to request, and where to find clinical trial options. The Pew Research Center, which gathers data on health seeking behaviours online, calls this “peer-to-peer health care”; its associate director, Susannah Fox has declared it “the most exciting innovation of the connected health era” . 4
It is well documented that patients turn to the Internet for more than information seeking; a key benefit accrues from the social connections formed through online cancer communities which provide emotional support and practical coping tips for managing the side effects of treatment. A randomized controlled trial with recipients of a breast cancer mailing list, suggests that a Web-based support group can be useful in reducing depression and cancer-related trauma as well as perceived stress. 5 Dr Gunther Eysenbach, recognized by many as one of the leading researchers in the fields of eHealth and Internet & Medicine, believes “ virtual communities are probably the one Internet application area with the greatest effect on persons with cancer.” 6 Heidi Adams, a young adult cancer survivor and founder of Planet Cancer, a social and informational site for young adults with cancer, cites social media as the foundation of the young adult movement. “Prior to 2000 there really wasn’t any way for this fragmented patient population to find each other and connect. Planet Cancer was created as an online home to connect patients…The opportunity to share resources, advice, and encouragement is something that can be incredibly empowering for a cancer patient.” 7
From travel to banking the Internet has disrupted many industries, and healthcare is no exception. The increasing democratization of medical information means it is no longer available only to healthcare professionals. Moreover, many patients are creating new content and sharing it in real time through online patient communities. Patient networks are emerging as a new medical domain within which a wide variety of individuals and groups become valuable healthcare resources. The opportunity exists for healthcare professionals to aggregate the valuable insights and information in patient communities into population-based data that may lead to a better understanding of cancer and potential treatment options.
As evidenced by online patient groups, such as Consano, a unique medical crowd-funding platform, founded by a breast cancer survivor, and Patients Like Me, a patient network that improves lives and a real-time research platform that advances medicine, patients can accelerate the research process and bridge the limitations of geography through the connectivity fostered by internet-based communities. Finally, virtual communities present an excellent opportunity for health researchers to learn about the experiences of patients. They provide rich, anecdotal sources of individual experiences with disease progression, reaction to alternative and standard treatments, and opinions on healthcare and its effect on family members and lifestyle.8 It is a largely untapped opportunity for researchers to analyse where and why gaps exist between evidence-based medicine and consumer behaviour and expectations. Such research may elicit a wealth of valuable data that may inform priorities for research, health communication, and education.
The #EBNJC Twitter chat on Wednesday 5th of March 2014 8-9pm GMT aims to discuss breast cancer service users experiences in an electronic and physical environment discussing the benefits, barriers and enablers. This chat is hosted by Marie Ennis –O’Connor @JBBC and @CalvinMoorley.
1. Ferguson, T. e-Patient Scholars Working Group [Accessed March 1, 2014]. Available at http://e-patients.net/e-Patients_White_Paper.pdf
2. Silliman RA, Dukes KA, Sullivan LM, Kaplan SH. Breast cancer care in older women: sources of information, social support, and emotional health outcomes. Cancer 1998; 83: 706–711.
3. Annunziata MA, Foladore S, Magri MD, et al. Does the information level of cancer patients correlate with quality of life? A prospective study. Tumori 1998; 84: 619–623.
4. Fox, S. Peer-to-peer health care is a slow idea that will change the world. [Accessed March 1, 2014]. Available at http://susannahfox.com/2013/08/03/peer-to-peer-health-care-is-a-slow-idea-that-will-change-the-world/
5. Winzelberg AJ, Classen C, Alpers GW, et al. Evaluation of an Internet support group for women with primary breast cancer. Cancer2003; 97: 1164–1173.
6. Eysenbach, G. The impact of the Internet on cancer outcomes. CA: A Cancer Journal for Clinicians. 2003; 53 (6), 356-371.
7. Patterson, K. Friends In Need. Cure Today. [Accessed March 1, 2014]. Available at http://www.curetoday.com/index.cfm/fuseaction/article.PrintArticle/article_id/1416
8. Hillan, J. Physician use of patient-centred weblogs and online journals. Clin Med Res. 2003; 333–335.