Patients Perspective on Hemodialysis Therapy (Raboan Discussion Forum)

/0 Comments/in , /by

Wednesday (15/12), Center for Bioethics and Medical Humanities (CBMH FK-KMK UGM) held the weekly Raboan Discussion Forum. The topic raised this week is the Perspective of End-Stage Chronic Renal Failure Patients on Joint Decision Making When Starting Hemodialysis Therapy. The topic was delivered by dr. Ouve Rahadiani Permana, M.H.Kes., M.Sc. dr. Ouve is lecturer of the Faculty of Medicine, Universitas Swadaya Sunan Gunung Jati (UGJ) and Masters in Bioethics UGM alumni. Meanwhile, the moderator was dr. Nurul Aida Fathya, Sp.FM, M.Sc. She is lecturer of the Faculty of Medicine at Universitas Jendral Soedirman and Masters in Bioethics UGM alumni.

Hemodialysis therapy or also commonly known as dialysis has a significant impact on patients. Kidney failure patients who take this therapy are required to limit the consumption of food and fluids. In addition, patients also have less ability to perform a physical activity such as working. Patients also have an emotional impact during the therapy. This attracted the interest of dr. Ouve to do further study, considering the prevalence of patients with kidney failure is increasing every year.

Doctors have a role to provide a complete explanation of the patient’s disease and treatment options. This is also an important aspect of bioethics because it is a form of respect for patient autonomy. But in reality, there are still many patients who do not get complete information from doctors. Based on previous research, it was found that 70% of patients with chronic kidney failure still do not know well their disease.

In addition to doctors, the patient’s family also has an equally important role to support the patient’s treatment therapy. So that a joint decision between patients, families, and doctors becomes an alternative that can be done in determining the treatment that respects patient autonomy.

“Shared decision making can optimize patients and families to make choices.” said dr. Ouve.

Based on dr. Ouve findings, chronic kidney failure patients are having deficient information about their treatment choices. It caused patients for not having well understanding of their hemodialysis therapy. In her conclusion, dr. Ouve recommended better communication for doctors and chronic kidney failure patients because complete information is the basis for patient autonomy.

 

The full video can be accessed here

Data Privacy in Healthcare (Raboan Discussion Forum)

/0 Comments/in , /by

The Raboan Discussion Forum was again held by the Center for Bioethics and Medical Humanities on Wednesday (08/12). This raboan theme continues the previous discussion regarding Health Law, namely Data Privacy in Health Services which was presented by Dr. Abdul Rasyid Thalib, S.H., M.Hum as chairman of the Indonesian Health Law Society, Central Sulawesi. Meanwhile, the moderator of the discussion forum is dr. Nur Azid Mahadinata.

Technological developments bring challenges to Health data protection. This makes the regulation of personal data protection an urgent matter today.

The demands of Industry 4.0 and Society 5.0 make Health services now use more big data and the internet of things to help sustain it. However, the regulation of personal data protection is still considered weak. So it is very necessary to review the draft to produce a strong and comprehensive legal umbrella.

“Because personal data is confidential and must be protected, everyone must keep it safe, for example by using social media wisely because it could be spread through social media,” said Dr. Abdul Rashid Talib.

 

Dr. Abdul Rasyid Thalib explained that the Data Protection Bill distinguishes between personal and privacy terms. Personal data is defined as general data that can change from time to time. Personal data include Full Name, Gender, and Nationality which are generally listed in the Identity Card (KTP). Personal data will form your identity as a nation and a citizen.

Personal data is different from privacy data. Privacy data is defined as special data that is fixed and cannot change. Personal data includes health data and information, biometric data, genetic data, sexual orientation data, political views data, criminal records data, personal financial data, and other data by the legislation. Personal data is also known as Geometric Data. Privacy data is personal data that will shape a person’s character or identity.

In the practice of healthcare and medicine, there is often confusion about the difference between personal data and privacy. Personal data and privacy data are very important to be protected because the data contains the individual’s right to determine whether the data will be communicated or not. Because information about personal data and privacy data has the potential to be misused so that it can cause harm to the data owner. This makes the urgency of the ratification of the Personal Data Protection Bill that needs to be ratified immediately

 

Full video and power point can be accessed here.

Bioethics and Health Law (Raboan Discussion Forum)

/0 Comments/in , /by

Center For Bioethics and Medical Humanities (CBMH UGM) held the annual Raboan Discussion Forum.  This week, Wednesday (01/12) the discussed topic is  Health Law Literacy. The topic was presented by Dr. dr. Muji Iswanty, S.H., M,H., Sp.KK.,M.Kes from Universitas Hassanudin. She is also the head Masyarakat Hukum Kesehatan Indonesia Sulawesi Selatan. The discussion was conducted by dr. Nasrun S.H., M.Sc as moderator.

Dr. Muji revealed that nowadays some doctors and health service provider doesn’t follow the four bioethics principal which is beneficience, non maleficience, autonomy, and justice. This occurences often led to legal dispute between patients and doctors or health care providers.

According to dr. Muji, doctors and patient should build a terapeutic relationship which is very important for both parties. To build healthy relationship between doctors and patient there should be a mutual understanding about both rights and obligations. Patients rights according to dr. Muji are healthcare services, rights for information, second opinion, privacy, and medical treatment consent. Meanwhile, patients ablogation are good intentions, giving information to doctor, to implement doctors advices and to be cooperative.

In another side, doctors and healtcare provides also had their rights and obligation. The obligation for doctors and healthcare are written in doctor’s oath and standard operating procedure. Meanwhile doctors and healthcare providers rights are the freedom to work, self privacy, and reward.

Bioethics principal and Health Policy thus can be concluded as very related. According to dr. Muji Health Law is part of the general law that regulates the behavior of every member of the community related to health services and is responsible for everything that can cause harm/death.

Laws related to health in Indonesia included Undang-Undang Praktik Kesehatan (UU Republik Indonesia No 29 tahun 2004), Undang-Undang Tenaga Kesehatan (UU Republik Indonesia No 36 tahun 2014), and Undang-Undang Rumah Sakit (UU Republik Indonesia No. 44 Tahun 2009).

It is very important for doctors and healthcare providers to understand this regulation because it is related to patient safety.

“This is our guideline that we need to know until we stop practicing,” said dr. Muji.

 

Watch the full video here