Human Health Project’s primary focus is to make peer-to-peer health education, information, and support accessible to the public, with the overall objective to empower individuals locally and globally to manage their health. The past four events by HHP, through their health information provided, help support this mission. The past events by HHP include, “What’s Wrong With Me: What to Do When You Can’t Get a Diagnosis,” “How Real-World Data is Transforming Healthcare,” “Finding Credible Information Online with a Special Focus on Fibromyalgia,” and “Building Your Healthcare Team with a Special Focus on Alzheimer’s and Dementia.”
In regards to the event, “What’s Wrong With Me: What to Do When You Can’t Get a Diagnosis,” which was held on October 30, 2020, an important element of discussion in this event was why a diagnosis cannot be made. Such reasons as explained in the event included symptoms are vague or hard to identify, multiple health conditions could complicate a diagnosis, some conditions do not have tests to identify them definitively, and a new condition may not have been discovered yet. In the event that a diagnosis cannot be made, seeking a second opinion from another physician or finding a specialist can be helpful in providing a diagnosis for an illness.
One of the panelists in this event, Sabina, was diagnosed with systemic lupus in 1988. However, Sabina noted the difficulty doctors had in diagnosing her initially, before she ultimately found the right doctor who helped her receive the correct diagnosis. Another panelist in this event, Dr. Andreas Reif, noted the challenges lupus can present in making it difficult on the part of doctors to give a diagnosis. However, in noting this, there have been advancements in technology, as well as resources available to doctors currently, to help successfully diagnose and treat lupus.
The second event, “How Real-World Data is Transforming Healthcare,” which was held on March 19, 2021, also provided significant information. As discussed in this event, Real-World Data includes various types of data derived from sources outside of randomized, controlled trials. Real-World Data can be collected from electronic health records, insurance claims, disease registries, and patient generated data such as surveys. The data can be obtained from a broad patient population. In this event, panelist Jaime Sanders, who has been living with migraines for an extended period of time, discussed relevant points regarding Real-World Data. Ms. Sanders mentioned that Real-World Data is significant in quantifying health information that is shared with a broad population. As Ms. Sanders also elaborated, Real-World Data can also help identify how marginalized groups, including people of color, live with migraine headaches as these groups are often underrepresented in clinical trials.
In regards to the third event, “Finding Credible Information Online with a Special Focus on Fibromyalgia,” which was held on June 11, 2021, panelist Katarina Zulak discussed her experience with fibromyalgia, which is a condition that causes pain throughout the body. Ms. Zulak discussed how finding reliable information online helped to find the right diagnosis and course of treatment for her fibromyalgia from a pain clinic. Ms. Zulak also discussed what to look for when finding credible information online. These include healthcare articles, which can be helpful for a patient to consult with their doctor regarding questions, that are also peer reviewed and include references.
The most recent event featured by HHP, “Building Your Healthcare Team with a focus on Alzheimers and Dementia,” which was held on November 12, 2021, featured panelists Jan Haberer and her husband Randy Haberer. In 2013, Ms. Haberer was diagnosed with MCI, or Mild Cognitive Impairment, at the age of fifty-three, which is a disease that can progress to Alzheimer’s. Ms. Haberer and her husband have become active supporters of the Alzheimer’s Association, whose goal is to provide help to individuals who are struggling with all forms of the disease.
The in depth discussions from the panelists, in the four events by Human Health Project, demonstrate the effectiveness of HHP’s goal in providing peer-to-peer healthcare education, information, and support to the public. By hosting additional events, HHP can build upon the success of its past events in successfully serving the healthcare needs of all communities.
More information about Human Health Project’s events can be found at: https://dev.humanhealthproject.org/events/