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Women with breast cancer and men with prostate cancer talk differently online about cancer – social listening research shows

  • Research identified over 20,000 online cancer conversations over the past 3 years
  • Analysis shows prostate cancer patients focus on ‘technical details’ while breast cancer patients make greater use of ‘emotional’ language – pointing to differences in progression, diagnosis and treatment of these two cancers
  • Research also reveals women with breast cancer receive significantly less online support than men with prostate cancer
  • Teva launches ‘My Day’ online cancer portal to support patients in their online cancer conversations 

Amsterdam--February 2, 2016 – Breast cancer patients and prostate cancer patients talk very differently about their cancer online and receive significantly different levels of online support, according to social listening research* commissioned by Teva Pharmaceuticals Europe and published ahead of World Cancer Day on Saturday, 4th February. Based on this research, Teva has launched an online cancer portal called My Day (MyDay.eu.com) that aims to help cancer patients and their caregivers learn about their condition, connect with their online support community, and have productive discussions with their physicians. The website, named ‘My Day’ to reflect the unique journey each cancer patient experiences, is guided by an independent, medical advisory board to ensure the portal provides content of value to cancer patients and their physicians. 

My Day editorial board member, Professor Dame Lesley Fallowfield, cancer psychologist and professor of psycho-oncology at the University of Sussex, Brighton, U.K. explains: “Newly diagnosed patients have to assimilate large amounts of information against a backdrop of fear and uncertainty. They have to appreciate the important issues that pertain to their particular condition, including the logic and rationale behind recommendations about treatment options before making informed decisions. Navigating the intricacies of healthcare systems can be another source of stress. Online materials need to embrace the emotional context within which information is provided.”

In commenting on the launch of the My Day portal, Dr. Susanne West, Sr. Director, Head of Customer & Patient Insight, Teva Pharmaceuticals Europe, added: “We know cancer isn’t one disease, but rather, a number of diseases. And we see from our social listening research that across different types of cancer, patients and their caregivers are having very different cancer conversations. So online cancer resources – like My Day – need to account for this, especially as patients increasingly go online to complement their in-person consultations with their physician.” 

Teva commissioned the social listening research to understand how conversations about cancer happen online. The study included an analytics or computational assessment of over 21,000 cancer posts as well as close linguistic analysis of over 700 prostate and breast cancer posts. The analysis showed that prostate cancer patients used less emotional language in their online conversations compared to breast cancer patients, focusing on the technical details of their cancer. The analysis also highlighted how women appeared much more active online in talking about cancer than men. The research showed that for prostate cancer, 65% of online conversations were in fact by their caregivers (i.e. wives, partners, family members of prostate cancer sufferers), whereas for breast cancer, only 17% of online conversations were by the husbands, partners, family members and other caregivers of breast cancer sufferers. This implies women with breast cancer seem to have far less online support or involvement by their caregivers.

Online comments by patients and their caregivers were also linguistically analysed  to assess perceptions of their physician’s expertise, partnership and communication skills. Breast cancer patients and their caregivers were twice as likely as prostate cancer patients and their caregivers to use social media to post critical remarks about their physician relationship. In the research, 45% of the conversations breast cancer patients and their caregivers had about their physician were linguistically categorised as ‘negative’. This compared with 23% of online conversations by prostate cancer patients and their caregivers. Breast cancer patients’ critical commentary was often linked to language describing feelings of frustration over not having sufficient information to be suitably involved in treatment decisions. The online analysis also highlighted a tendency amongst breast cancer patients to use metaphors like ‘pin cushion’ and ‘poked & prodded’ when describing their interactions with healthcare professionals. Alongside saying they don’t understand physicians’ treatment decisions or that they were not adequately involved in these decisions, breast cancer patients talked about doubting the advised approach and often spoke about integrating natural approaches (i.e. diet, nutritional supplements) into their treatment plan. In several cases, breast cancer patients discussed potentially abandoning additional medical treatments, such as chemotherapy, for ‘natural’ routes following surgery.

These differences between breast and prostate cancer conversations may partly be attributed to differences in the progression, diagnosis and treatments of these two types of cancer. Prostate cancer is typically treated with a watch-and-wait approach, delaying time to prostatectomy to preserve quality of life for as long as possible without risking the cancermetastasizing to other parts of the body. Furthermore, prostate cancer patients often have access to a urologist as well as an oncologist to further ‘crowd-source’ their knowledge and ideas about the best treatment path forward. Based on the social listening research, prostate cancer patients appeared to trust themselves to collate this ‘crowd-sourced’ information from their peers and medical specialists and to partner with their physician to make the right treatment decision. Also, unlike with other types of cancer, prostate cancer patients have relatively concrete assessment tools – such as Gleason scores and the Prostate-Specific Antigen (PSA) test – that help men recognise the points at which it’s time to make a treatment decision. These concrete tools also provide prostate cancer patients with common ‘data points’ they can refer to in sharing their stories online with fellow patients. 

However, for breast cancer patients, the complexity of tumour types and the lack of relatively simple assessment tools may make it more difficult for women to share ‘technical details’ of their cancer online. Women with breast cancer often reported they were not told by their healthcare professionals the path forward and that they were surprised by secondary treatments prescribed without forewarning. The breast cancer discussions indicated physicians frequently recommended unilateral mastectomies followed by hormone treatment or chemotherapy. Breast cancer patients did also go online to crowd-sourcepotential treatment decisions when a physician did not seem clear enough or said something that sounded ‘off’, and expressed a desire to use that information to partner with their physicians. If breast cancer patients gave voice to fears or anger within their online community, they warned peers that they’re going to speak in negative terms. By contrast, they frequently reminded peers to ‘stay positive’. 

Dr. West continued: “Patients and their caregivers are playing a more direct role in managing their health, with conversations and discussions happening more and more online. Connecting with fellow patients and caregivers in virtual online communities can be a source of comfort – but it can also impact discussions with physicians, when online peers advocate unfounded treatments. Understanding the types of cancer conversations happening online is key to helping healthcare professionals have productive, face-to-face conversations with their patients.” 

The European cancer portal MyDay.eu.com was launched in late 2016 with local language versions of the portal being launched in individual European countries during the course of 2017.

About the Social Listening Research

Teva Pharmaceuticals Europe commissioned Treato, a healthcare data-analytics firm, to carry out the social listening research. Treato identified 21,030 online posts from 2013 to 2016. Of these, just under 3,000 posts (2,984) were pulled for closer reading, and just under 1,500 posts (1,444) were chosen for the analysis. The analysis focused on four types of cancer – breast, lung, lymphoma and prostate. For breast cancer, analysts identified 7,826 posts from such online forums as breastcancercare.org.uk. They culledposts for review and narrowed the selection to 394 posts. For prostate cancer, analysts identified 2,989 posts from such online forums as patient.info. They culledposts for review and narrowed the selection to 342 posts. In selecting posts, analystsrequired that the online posts provided insights into the patient or caregiver’s experiences with their cancer – either at pointof diagnosis or following diagnosis. Posts were identified as being written by patients themselves or by their caregivers (i.e. spouse, family members. The analysis looked at the characteristics of the patient-physician and the caregiver-physician relationship, assessing the cancer patient’s emotional state at the point of diagnosis and throughout their journey with cancer. The research also looked at why patients and caregivers are online. Online conversations by patients and caregivers fell into two main categories: 1) Processing and sharing emotions online with peers – in particular, around the time of diagnosis, and 2) Searching online through a maze of cancer information and resources to understand ‘what’s next’. 

About the My Day online cancer portal

MyDay.eu.com is an online cancer portal providing information on cancer and links to related cancer resources for people who have been recently diagnosed with cancer, are receiving treatment, or who are in remission.  The portal provides patients and their caregivers with three types of content: 1) Patient stories, patient portraits and emotional content to support recently diagnosed patients in having difficult conversations – such as when informing friends and family of their illness; 2) Information on cancer itself – to help patients and caregivers navigate through the maze of cancer information online to learn more about their condition; and 3) Health & well-being information, such as dietary and nutritional information including recipes and patient tools such as goal trackers, appointment reminders and medication trackers. 

About Teva Europe

With its European headquarters in Amsterdam, the Netherlands, Teva is Europe’s largest generic medicines producer, leveraging its portfolio of more than 1,800 molecules to produce a wide range of generic products in nearly every therapeutic area to help patients in nearly forty countries across the region. In specialtymedicines, Teva has a world-leading position in innovative treatments for disorders of the central nervous system, including pain, as well as a strong portfolio of respiratory products. Teva uses its generics and specialty capabilities to create new ways of addressing unmet patient needs by combining drug development capabilities with devices, services and technologies. Teva's net revenues in Europe in 2015 were €4.9 billion. For more information, visit www.tevapharm.com. 

  1. * Treato, ‘Teva Global Cancers – Social Media Patient Intelligence Report’, January 2017