[Humanscape Advisor] Korean Foundation Fighting Blindness President “Jeong-nam Choi”
Hello HUMs!
The advisor we have the honor of introducing today is the Korean Foundation Fighting Blindness President, Jeong-nam Choi. Humanscape and the Korean Foundation Fighting Blindness recently signed an MOU. In this interview, we will focus on insights that real patients face which will be a pivotal aspect in the growth and development of the Humanscape Project.
1. It is great to have you here President Choi! Could you please briefly introduce yourself to the Humanscape community?
Hello. My name is Jeong-nam Choi. I am currently the President of the Korean Foundation Fighting Blindness (KFFB). In 2004, I was diagnosed with retinitis pigmentosa and admitted into the KFFB.
At that time, research and development of related diseases and analysis were scarce: even doctors did not know well. Therefore, I looked for overseas resources relate to the disease and then translated it for the community. During that process, I became knowledgeable of diseases in many fields and was assigned as a academic director. I have been holding frequent seminars and as a result of my continuing activities for the treatment of diseases, I am now in charge as president.
2. Could you explain to the Humanscape Community what the KFFB does, as the president of the organization?
There are about 8,000 people registered in our association which accounts for more than 50% of patients with retina-related diseases . The rest of the people who do not have membership probably do not even know that an association for them exists, but also there are people who have gave up knowing that it is incurable and workers who fear inequality and discrimination in the workplace for having that status. Our association works to run campaigns, advance research, hold seminars, etc to alleviate the problems stated before.
3. If so, as the president/representative of the patient association, what was eye catching that made you join the Humanscape Advisory Board?
Last year, our headquarters collaborated with the American Institute for the Prevention of Blindness to create a site on collected data on the diagnosis of retinal-related genes — that is when we came to realize the potential of blockchain technology. The most important issue in creating a diagnostic site was the security of medical information, and I felt that using a block chain would solve security vulnerabilities.
Therefore, I came to meet several medical related blockchain-based projects. I felt as though that Humanscape was most authentic in their approach that best matched our interests. Humanscape has a very passionate attitude towards the understanding and sympathy of the disease itself rather than the technical and market aspects related to blockchain.
So, I joined the Humanscape Advisory Board knowing that I can contribute on the administration aspects of managing a patient association.
4. Do you think that patients in the association intimately want clinical trials?
Basically, the medication that pharmaceuticals have developed today are on a complete different level from that they have produced in the past. It is closer to precisely curated treatments. So, now more than ever, patients are opting to participate in these clinical trials for treatment opportunities.
Yet, the biggest problem that patients face in Korea is that there has not been many new breakthroughs. It is only reality that Korea is lagging behind the US and UK in terms of technology and capital.
Through the Humanscape Project, I hope that information about patients with incurable diseases can be collected and processed so that it can be properly utilized in clinical research in the near future.
5. You have led the patient association for quite a long time. What do you think Humanscape should prioritize in their development?
Humanscape needs to carefully consider how to manage and sustain the ecosystem they will create. This is very important. Patients in the association may judge that it is not worth investing their time and effort in a network that they will not ultimately benefit from and leave. Therefore, it is critical to accurately organize medical information pertaining to each field and update it continuously. Also, it is necessary to make an environment where patients can openly communicate with each other and help another emotionally. Whether this is done online or offline, whether Humanscape holds academic conferences or seminars, or whether Humanscape creates a foundation to group similar patients by hobbies, something must be done to maintain the interests of the users. Beyond the rewards system, the emotional bond and joy will be a stronger adhesive in keeping this community together.
6. Any tips or advice that you had in mind for Humanscape?
There are a lot of things that I want to say (chuckle). I don’t think there is enough time left in the interview to share all of it… but I hope to consistently communicate with the Humanscape Team. But most importantly, Humanscape needs to keep their original goal in mind throughout its development so that when competitors show up in the field, Humanscape will not be shaken my them.
In addition to the MOU, Korean Foundation Fighting Blindness President “Jeong-nam Choi” has provided new insight regarding the operations management of Humanscape. We thank President Choi once again for his interest in the Humanscape Project.
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