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Patient Blog Studies Tell Full Story of Disease Impact

by Junghwa Lee | Mar 15, 2017

Change is the only constant. This is especially true across today’s healthcare landscape. Among the most important changes in our industry is how patient evidence and experiences are captured. Kantar Health is a leader in conducting patient-centered research that connects traditional patient data types with first person accounts of what it’s like to live with disease. Our work is putting the patient on the front lines of treatment research and development – undoubtedly where they’ve always belonged.

As patient-centered research gains momentum, it's becoming increasingly clear that conventional approaches for understanding the patient are failing to provide true insight into the mental and physical impact of disease. In order to achieve a better understanding of the reality of everyday patient life, advanced platforms are needed to conduct real world research that will bring into focus the unmet needs of patients.

New research by Kantar Health, developed in South Korea has found that Patient Blog studies enable a much closer look into the real lives of patients than ever before and serve as a more effective means to understanding the increasingly important roles patients play in healthcare decision making.

While this new platform is highly promising, recruiting and continually engaging patients for research purposes can be challenging. That's because these projects require substantial time commitment from patients, including attending orientations, completing tasks, responding to feedback and uploading pictures, and patients are very cautious about sharing personal data and information due to privacy concerns, although this can be alleviated by assuring patients that their private information will not be revealed. In addition, daily monitoring of, and acting on, the information patients provide is a tedious process that takes time, as it requires processing the patient material and offering feedback to respondents for further follow-up on a daily basis.

Key Findings

Our study proved highly successful in achieving a better understanding of the patient's true daily life. We were able to collect qualitative data and quantitative data about the impact of disease in the real world, and uncover how it affects an individual’s attitudes and behaviors toward managing health. For example, we found that psoriasis patients are very selective about what not to eat, such as meat, fried food and fast food, and what not to wear, such as black colored pants and shirts, and through images and video we can observe the seriousness of their conditions in the context of their own lives and surroundings.

In addition to capturing their actions, it was also beneficial to capture their feelings, as this information provided insight to their emotional status. In further studies we plan to request images from patients that express their emotions. Writing about daily activities can be monotonous, therefore the more images collected, the more vivid the results.

It’s equally important to consider the most accessible ways to upload content or images. By accessing the Patient Blog studies on mobile devices and tablets in addition to PCs, we can be assured of capturing specific moments of patients' lives more easily.

Finally, it would be very beneficial to capture patient experiences during hospital visits to monitor interactions with physicians to see if there are any unmet needs during consultations. While it will be challenging to recruit patients who are planning to see physicians during the observation period, the information derived will be of great value.

Tips for Conducting Effective Studies

  1. Selecting the right respondents for your study is critical. Conduct pre-interviews with patients to determine if each is qualified for the study.
  2. Assure respondents that their content and images will not be shared with other respondents. Patients need to feel secure that they have their own personal cyber space when they share information and that their information is protected.
  3. Conduct an orientation with participants before blog writing begins to share the objectives of the study and to communicate clear guidelines that need to be followed during fieldwork.

Kantar Health's Patient Blog studies feature qualitative methodologies and customized online platforms. They are ideally suited for diseases not caused by aging, as young patients possess greater familiarity with online and digital tools are more willing to express themselves and their diseases that significantly impact their daily lives. Our Patient Blog studies will help you better understand the mental, physical and emotional states of patients caused by the disease burden and its impact on quality of life, obtain a tangible understanding of patients’ behavior to control their disease conditions or symptoms, and find deeper and more practical unmet needs and under-met needs of current treatments.

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