Information Patients With Melanoma Spontaneously Report About Health-Related Quality of Life on Web-Based Forums: Case Study.

BACKGROUND: There is a general agreement on the importance of health-related quality of life (HRQoL). This type of information is becoming increasingly important for the value assessment of health technology assessment agencies in evaluating the benefits of new health technologies, including medicines. However, HRQoL data are often limited, and additional sources that provide this type of information may be helpful. OBJECTIVE: We aim to identify the HRQoL topics important to patients with melanoma based on web-based discussions on public social media forums. METHODS: We identified 3 public web-based forums from the United States and the United Kingdom, namely the Melanoma Patient Information Page, the Melanoma International Forum, and MacMillan. Their posts were randomly selected and coded using qualitative methods until saturation was reached. RESULTS: Of the posts assessed, 36.7% (150/409) of posts on Melanoma International Forum, 45.1% (198/439) on MacMillan, and 35.4% (128/362) on Melanoma Patient Information Page focused on HRQoL. The 2 themes most frequently mentioned were mental health and (un)certainty. The themes were constructed based on underlying and more detailed codes. Codes related to fear, worry and anxiety, uncertainty, and unfavorable effects were the most-often discussed ones. CONCLUSIONS: Web-based forums are a valuable source for identifying relevant HRQoL aspects in patients with a given disease. These aspects could be cross-referenced with existing tools and they might improve the content validity of patient-reported outcome measures, including HRQoL questionnaires. In addition, web-based forums may provide health technology assessment agencies with a more holistic understanding of the external aspects affecting patient HRQoL. These aspects might support the value assessment of new health technologies and could therefore help inform topic prioritization as well as the scoping phase before any value assessment.

'Without data, you're just another person with an opinion'.

Introduction: Given the recent impressive digital transformation worldwide, the importance of data has reached a new dimension. It is, therefore, provocative to ask whether data can save healthcare systems from bankruptcy.Areas covered: We reviewed published examples in the search for the evidence on how the growing amount of data could change the way we used to assess the value of healthcare technologies, ensuring a more holistic approach in the decision-making process while reducing the waste in the healthcare.Expert opinion: The growing amount of data will continue to provide a multitude of valuable insights that can save healthcare systems from bankruptcy. Electronic medical records, IoT, wearables, and mobile applications generate constant data streams that can be utilized endlessly thanks to methodological advancements such as SNA, unsupervised and supervised machine learning, and natural language programming. However, interoperability across these multiple data sources still pose a challenge for the future development of data-driven healthcare. Already today however, decision makers can utilize Big Data to develop conditional coverage schemes for very expensive and complicated health technologies suitable for personalized healthcare. More advanced payers may utilize even data analytics even further and develop AI-based pricing schemes.