Written by Chen Gau-tzu, Chairperson of the Pharmaceutical Benefit and Reimbursement Scheme Joint committee, (PBRS)
The 2nd Generation NHI has been implemented for 7 years; and a reform is looming on the horizon. The NHIA can no longer ignore the rising voices about patients’ right to participate in important healthcare decisions. The NHIA has studied the practices in countries where similar healthcare programs are implemented, including the UK and Canada, hoping to learn from their experiences in involving patients in the decision-making process.
On-line platform for commenting
The NHIA has established an on-line platform for patients to share their comments primarily on severe conditions and injuries, e.g. cancers. The platform is open to patients, patient groups and carers.
The platform also gives prompts to help patients to comment, such as “what is the impact of the disease on your qualify of life?”, “Does your current treatments fail to control the discomfort? What is it? What is your current treatment? Is there any side effect?” etc.
This platform also provides the latest product information with a link to the TFDA’s website for the access to a short description of the new drug to be discussed in the Pharmaceutical Benefit and Reimbursement Scheme Joint committee, (PBRS). The description is about 300 words in easy-to-understand language.
Patients’presence in crucial meetings
Patients’ comments will be distributed to the delegates during the meeting or be directly incorporated into the meeting agenda. The HTA taskforce of the CDE has been commissioned to evaluate the aforementioned platform for written comments, hoping to improve this mechanism.
In 2017, the NHIA, for the first time, responded to patient groups request and invited patient representatives to attend the Pharmaceutical Benefit and Reimbursement Scheme Joint committee, (PBRS). Patient groups can appoint at most two delegates to give a presentation in the meeting. So far, representatives who have come to express their opinions include family members and patients with type 4 mucopolysaccharidosis, rheumatoid arthritis and hemophilia. The presentation consists of a 10-minute briefing and a discussion section. After that, the representatives will leave the meeting without participating in follow-up decisions or voting.
Patient representatives attend the whole meeting
However, patients’ involvement in new drug decision has taken a major step forward since June this year. Patient representatives are now able to attend the whole meeting but without the right to vote. The chairperson may invite them to comment if it is deemed necessary and appropriate.
The attendance in the whole meeting will allow patient groups to witness the whole discussion process and to understand the panel’s opinions. At present, there are two regular seats for patient groups taken by Tsai Li-Chuan (CEO of Formosa Cancer Foundation) and Wang Ya-Hsin (Secretary-General of Psoriasis Association Taiwan).
NHI decision focuses on patients' right
Patients’ involvement in NHI new drug listing has evolved from providing written comments to attending the discussion meeting, a huge progress in patients’ right. In the future, with adequate education and training, patient representatives may be given the right to vote and sit in the meeting as “expert patients”.
【2019-09-06 / United Daily News】
