Role of Social Media in PRO research‘Patient’ should be considered as the centre for any healthcare system. There is growing realization for the patient-centered healthcare system. The outcomes of a clinical intervention obtained by the patient i.e. patient-reported outcomes (PROs) seemed to be of more importance in coming years than any other outcomes like clinical, physiological or caregiver-reported. The US Food and Drug Administration (USFDA) defines PRO as any report of the status of a patient’s health condition that comes directly from the patient, without interpretation of the patient’s response by a clinician or anyone else.

Social media represents a brave new world for healthcare. Evidence from literature finds that healthcare organizations, clinicians and patients can benefit from the use of social media. For healthcare organizations, social media can be used primarily for community engagement activities such as fundraising, customer service and support, the provision of news and information, patient education, and advertising new services.

As per the studies, enhanced treatment adherence and outcomes can be obtained by giving attention to patient feedback on healthcare outcomes and patient behavior change. In the western world, PROs are increasingly recognized as important tools in adding value to the drug review and evaluation process because they provide unique perspectives on medical conditions or their therapies that are known only to the patient. Under the auspices of marketing strategy, researchers are gleaning abundant personal information about patients through social media. Yet, physician-led research is slowly acclimating to this new approach to collect patient-reported data, although some investigators are increasingly open to new ways of collecting data through social media.

Although PRO endpoints are still used in a minority of clinical trials, their use has grown in recent years; particularly in randomized Phase III trials. An analysis of global clinical trial registries shows that approximately 12% of the interventional trials registered by the pharma industry and over 15% of non-industry sponsored protocols now incorporate some form of PRO assessment. While for certain therapeutic areas (most notably, psychiatric disorders) PROs may be included in clinical trials as primary efficacy indicators, commercial use of PRO outcomes focuses predominantly on their employment as secondary endpoints designed to provide ‘added value’ data to support key biomedical endpoints. Moreover, by using PRO, various types of outcomes can be measured such as physical functions, symptoms, global judgments of health, psychological well-being, social well-being, cognitive functioning, role activities, personal constructs, satisfaction with care, health related quality of life (HRQoL), adherence to medical regimens and clinical trial outcomes. When it comes to diseases like cancer, it is important to determine the quality of life of the patient as patients with progression of cancer frequently experience multiple symptoms, economical burden, home management problems and lack of emotional well-being, all of which can adversely affect quality of life. PROs are helpful in the determination of quality of life in cancer patients.

Patient-centered outcome research (PCOR) is still in infancy in India. Having said that, although today’s patients are more knowledgeable and empowered than those in the past, when it comes to the choice of the best treatment modality, many physicians in India do not take into account the patient preferences. Objectified measures of the effects of a particular intervention such as, patient’s laboratory values or clinician’s findings are given more importance than the patient-oriented, subjective measures. Therefore, during the decision-making process in the Indian healthcare delivery chain, more importance is given to what his treating clinician feels. This is in stark contrast to other commodities (such as automobiles, consumables, clothing, etc.) where the client’s preferences are given the top priority.

Health care is moving towards a value-based system, where improving PROs such as, QoL- are benchmarks of good clinical practice. There is a gradual but real momentum in clinical research to use PROs, whenever possible. Industry can no longer rely on traditional pharmaceutical sales models alone, companies now certainly need to look into new forms of communication technology to demonstrate the value of products to a wider audience beyond the traditional physician pool. While a QoL label claim may be illusive in the current climate, the publication of an article demonstrating the benefits of a drug treatment based on data from a well developed PRO scale is likely to have a far reaching impact. The publication of data based on such PROs is likely to find its way onto social media and patient-web sites and such information is of interest to both patients and patient advocacy groups alike.

The future of social media seems to have a good foundation in the healthcare industry to effectively change the standard face-to-face and paper-trail methods of health care delivery. While increasing public demand will continue to upgrade the provider-patient experience and patient-advocacy interface of social media, effective methods of collecting PROs, on the other hand, may require more systematic collective thinking and future consensus.

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