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.

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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.

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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. 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. 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. 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.

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