Activity

2021.03.16. Opinion on the warning sound of insulin pumps shared with the Ministry of Food and Drug Safety

We conducted a survey about the warning sound' of insulin pumps and delivered it to both the Medical Device Policy Division and the Communication Cooperation Division of the Ministry of Food and Drug Safety.

2012.03.26. Lecture at Ajou University

We held lectures for 2nd grade and 4th grade students taking endocrinology classes at Ajou University. We hope that students who want to become doctors will not only gain medical knowledge through textbooks and lectures, but also get to know the position of patients. We talked about the necessity of a patient-centered approach in medicine and about the benefits of patient-led and user-centered medical care.

2021. 3. 30. [Press Release] The position of the Patients' Association and the Korean Association of Patient Organizations in regards to the “Patient-Centered Medical Technology Optimization Research Project”

During the selective screening process of the 'Patient-Centered Medical Technology Optimization Research Project', the research topic proposed by the people and patients in 2020, the 'Research on blood sugar-related data collected by type 1 diabetics' was dropped due to a supposed 'conflict of interest'.

The research topic was proposed by KST1D, however the project team never requested any advice and even the problem of a conflict of interest was never confirmed with KST1D, but instead was used maliciously to drop the research topic altogether.

Although the proposed actions were recorded in meetings and reported to the steering committee ahead of time and the patient groups donated their data to the medical staff at the university hospital, there is no conflict of interest and it has now become clear that the project team is not 'patient-centered' at all, as claimed in their name. KST1D is disappointed by the behaviour of a 'patient-centered' research team and would like them to apologize to the patient organizations, as well as drop 'patient-centered' from their project name.

Furthermore, the Ministry of Health and Welfare should take measures to prevent a situation like this from reoccuring.

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2021. 3. The Korean NHI created Diabetes Awareness posters with a lot of problems. After feedback from the members of KST1D, NHI applied it well to their campaign.

The National Health Insurance in Korea created Diabetes Awareness posters without asking for input from the relevant patient groups. The resulting images were upsetting and discouraging and the members of KST1D felt their life was portrayed as pitiful and sad, without highlighting their initiatives and achievements of a healthy and happy life.

The character looks uncomfortable, it doesn't immediately conjure the image of diabetes and not all symptoms are explained in the text below.

The characters look sad and cry at being injected, making parents of children with diabetes uncomfortable that this is how their children are viewed by the public.

The blood sugar meter is using the mmol/l measuring system instead of the mg/dl measuring system as used in Korea, therefore 9.2 would be considered a case of severe hypoglycemia. Even using the mmol/l system, 9.2 would be considered a rather high level, thus the picture is very inaccurate.

After feedback from the members of KST1D, the NHI apologized for not consulting with patients and for using incorrect numbers.

The pictures were updated and now feature a much more welcoming green background, more information, happier characters and overall a more positive impact:

KST1D is very happy that NHI listened to feedback and applied it well to their campaign.

2021. 4. 10. Online meeting for new patients -Type 1 diabetics, who are you?

We organised an online meeting for patients who have recently been diagnosed with type 1 diabetes, with the aim to explain what type 1 diabetes is and to share difficulties in the early stages of diagnosis. We had planned to hold these meetings and lectures in person after the Covid-19 situation improved, but because they have been delayed for such a long time already, we did not want to postpone them any longer and decided to conduct them online instead.

2021. 4. 24. First Type 1 Diabetes Seminar - How to use medical devices in a smart way!

KST1D held its first online lecture on managing glucose levels using continuous glucose monitors and insulin pumps and how to make good use of the medical devices available.

2021. 4. 27. The 5th Living Lab and Gender Forum: "The Role and Challenges of Patients and Their Families from a Gender Perspective'.

On Tuesday, April 27, the 5th Living Lab and Gender Forum was held online from 2pm in the afternoon. Meeting non-face-to-face online together with Now Social innovation Network and the Science and Technology Policy Institute, CEO Kim Mi-Young (Korean Society of Type 1 Diabetes) emphasized as part of the theme of "The roles and tasks of patients and their families from a gender perspective." that patients are active participants who manage their own care, not just passive beings. In particular, she pointed out that while user-led problem solving methods have been used a lot recently, the opinions of end-user patients have not been appropriately reflected in the medical field. "We need to strengthen our own capabilities with the perception that patients or guardians are active agents," CEO Kim said, stressing the need to make more efforts to listen to voices and opinions of patients and to join forces for true "patient-centered future medical care."

2021. 4. 30. Why is the Korean Society of Type 1 Diabetes angered by the Patient-Centered Research Project?

During the screening process for the selection of "Study on Blood Sugar-Related Data Collected by Type 1 Diabetics" proposed by the patients' association, it came to disagreements between the business group and the patients' association.

The project aims to collect data on type 1 diabetes patients using continuous blood glucose monitors, which have been approved for use in Korea since the issue was raised many years ago, and find ways to utilize them. However, during the subject screening process, the project team drew backlash from the Korean Federation of Patients when it included a phrase in the meeting concerning conflicts of interest that "there was a group of researchers who had conducted joint research with a patient group who proposed the subject."

In this regard, Kim Mi-young, CEO of the Korean Association of Patients, said in a telephone interview, "If the topic we proposed is selected, there is a possibility that a specific researcher will take charge of it."

"The project team did not even check the facts of the patients' association before raising the possibility of conflict of interest," CEO Kim said. "The professor did not apply due to the possibility of conflict of interest (after the proposed topic was selected as a back-up research project) and other teams are conducting the research." CEO Kim also mentioned, "Looking at these processes, I suspect that the business group intentionally tries to drop the subject proposed by patients and the public."

The business group believes that it was all a misunderstanding. "We have never used the expression 'conflict of interest'," said Kim Min-jung, secretary general of the business group, in a telephone conversation with this paper. Under the decision-making system, this issue will be discussed by the steering committee of the business group, he added, "There are some misunderstandings that the Korean Federation of Patients misinterpreted, and we are careful to respond publicly." In response, Kim Yoon, chairman of the steering committee, said, "There is a bond between the association and researchers (in the business group) and we are trying to create and receive research tasks," adding, "But we did not explain the reasons for claiming this." "Since the business group made such a claim, the evidence should be presented by the business group."

After this process, the topic was proposed as a conversion study that was to receive less than 500 million won per year within five years, but it was selected for a back up study that would receive less than 100 million won per year within two years. As a result, the size of the support has decreased and the theme has been selected, but the process has not been smooth, and the conflict between the two sides has yet to be resolved, especially as the patients' association and patient groups are sensitive to suspicions of "conflict."

The steering committee of the business group, which said it would discuss ways to solve the problem, is scheduled for May. The problem is that the conflict between the patients' association and the business group continues until this year. The three topics proposed by the Association of Patients this year were also voluntarily withdrawn in March during discussions between the association and the business group.

2021. 5. 22. Korean Society of Science and Technology's 2021 Electrical Conference 'Patients as Maker, Collaborator, Expert'

In a special session of the 2021 Electrical Conference of the Korean Society of Science and Technology, we introduced the foundation of our patient association and its activities under the title "The Patient as Maker, Collaborator, Expert."

2021. 5. Hemophilia Association

KST1D places a big focus on accessible resources and policies with the patient’s best interest at heart. Recently KST1D has been asking its members to support the Korean Hemophilia Association to gather signatures in order to appeal a decision made by the Health Insurance Review and Assessment service to stop all prescriptions for a new treatment called Hemlibra. With the new treatment, subcutaneous injections are used instead of the more painful injection directly into the blood vessels. The new treatment is not only less painful, but also cheaper and has longer lasting results. The Review Board has now decided that children under the age of 12 should try the conventional treatment ITI first.

As there is no benefit to the actual patients and it is in fact decreasing their quality of life, the Hemophilia Association is looking to appeal this decision by asking the Review Board to put the wellbeing of the children first and foremost. As many members of KST1D understand the difficulties of being a parent to a child with a chronic illness and having to deal with a lack of suitable treatments, KST1D is helping to spread awareness of this issue among its members.

The Review Board is set to meet on the 18th of May to discuss the issue again and hopefully reverse their decision and keep offering prescriptions for a less painful treatment.

2021. 6. 4. Meeting of the Ministry of Food and Drug Safety in regards to Insulin Pump Warning Sound

On June 4th, we had a meeting at the office of the Korean Society of Type 1 Diabetes to discuss insulin warning sounds. A total of 4 people from the Ministry of Food and Drug Safety attended the medical device standard* information team, a medical device screening team, and a communication cooperation team.

CEO Kim Mi-young, director Na Hyun-joo, and director Park Eun-kyung attended the patient meeting. It was a worthwhile meeting, despite the official letter and opinion letter sent by the Association of Patients on March 16 being delivered late.

Our patients' association have asked to change the warning sounds since 2015, when our members actively started to use insulin pumps, however, the insulin pump companies have maintained they cannot change the warning sounds as they are mandated by the Ministry of Food and Drug Safety. In response, the KFDA said there was no obligation that injections, low battery, low insulin levels or system errors require a beeping warning sound.

Our patients' association will deliver this information to the insulin pump companies and ask them to revise the system, so that the next firmware upgrade has adjustable warning sounds.

The Ministry of Food and Drug Safety also requested that not only the insulin pump warning sound be amended, but that patients will actively inform the companies of any discomforts or concerns. While it was created to help with disease management, and the Ministry of Food and Drug Safety said that if it puts patients in a more difficult situation, they would review it to improve it further..

The official said if there is a similar issue in the future, he will discuss it with the Ministry of Food and Drug Safety at any time so that the opinions of patients and users are reflected. It was a great opportunity to realize how important communication between government departments, medical device manufacturers, pharmaceutical companies, and patient groups really is.

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2021. 6. 19. Online Meeting with Novice Dads

We made time to communicate with fathers who are guardians of the patients' association family, drawing on the past and future of our patient's association, and our mutual concerns and future.

2021. 7. 2. The media's sensitivity in regards to diseases

Following an article on diabetic retinopathy, an article about cerebrovascular disease was recently published in Health Chosun in 365. It was an article written specifically for type 1 diabetics. However, people with type 1 diabetes and their families could be nothing but angry. The press monitor of the patients' association sent an e-mail, but the reporter responded that he didn't see what the issue was, because it was all based on facts and that he wrote "an article that tells patients about the actions they should take." What he wants to tell people with type 1 diabetes is not new information to people already living with type 1 diabetes. Are there any diabetics who don't know that hypoglycemia and hyperglycemia are bad?

If he wrote an article in order to change how people with type 1 diabetes take care of their condition, it would be better for him to focus on how to manage diabetes well while avoiding too low or too high blood sugar as much as possible. Although the contents of the article were revised after several e-mails were exchanged with the reporter, it was sad to see that the media and the reporter, who deals with health-related articles in particular, not other fields, lacked sensitivity in regards to this disease

If there isn't much knowledge about a particular disease, it is best not to write an article about it. On the other hand, it would be good to study the disease more before writing another article. Articles written without thorough investigation can cause affected readers to become frustrated and lose control of their blood sugar management in response. We hope that the press, and especially health magazines and journalists can increase their sense of awareness in regards to how theiy deal with diseases and the people they affect. The Korean Society of Type 1 Diabetes will continue to monitor the media and correct any inaccurate statements. We will continue to strive for an environment where people living with type 1 diabetes can manage blood sugar with confidence.