How did you become a patient advocate?
Back when I was a graduate student at the University of Pennsylvania, I researched Alzheimer’s disease extensively. Following this, I worked with people with Alzheimer’s disease in the American healthcare system. Meanwhile, I realised from close friends in the USA and China that there were contrasting outcomes between the two countries in the care of Alzheimer’s disease patients, due to a lower level of patient information and awareness in China. I felt a call to return to China to use my knowledge and skills to benefit people with Alzheimer’s and their families. In addition, I have hypertension and this means I have a high risk of getting a more serious and life-threatening disease. I hope my patient advocacy work can help patients like me and prevent serious illnesses early.
How did you and your organization learn about IAPO and then become involved in IAPO?
In 2009, I attended the International Symposium on Alzheimer’s Disease in Singapore and met Hussain Jafri from Alzheimer’s Pakistan, who at that time was the IAPO Chair. Hussain introduced me to IAPO and I was attracted to IAPO’s focus on patients. The mission of IAPO is very different from those of the alliances commonly seen in China, which are for scientists and health professionals. I have long recognised that healthcare should serve patients to improve their quality of life. Scientific advances in medical practice cannot serve that purpose without the involvement of patients. However, action upon such recognition has been very rare in China. Thus, it became a good opportunity for BAAD to learn from the international experience through IAPO and to promote patient-centred healthcare in China.
What has your involvement in IAPO brought you?
By attending IAPO’s annual general meetings and biennial Global Patients Congress, I have been able to meet and communicate with patients’ organizations all over the world. Through these events, I learned about the challenges and needs other members have been facing and how they have acted upon these to promote patient-centred healthcare. I have been especially encouraged by the immense energy of patients and their family members in leading patient advocacy around the globe. Through the interactions with other IAPO members and participation in IAPO’s capacity building projects, BAAD recognised the potential for better healthcare outcomes for Chinese patients and the possibility for BAAD to help achieve this.
Over the years what has been your biggest challenge as a patient advocate and as a patients’ organization in China?
One challenge results from social determinants that sometimes undermine Chinese patients’ awareness of the healthcare they are getting and inhibit them from expressing their own needs. For example, some Chinese patients will not seek adequate care or adhere to treatment for Alzheimer’s disease because they or their family cannot afford to consider the symptoms as indicators of a serious disease. Even though Alzheimer’s disease significantly affects patients’ quality of life, its outcome develops in relatively long terms, in contrast to immediate fatal conditions. As a patient advocate in China, I sometimes find it more challenging to raise awareness among some Chinese patients when lack of patient information is not the only issue hindering them. In addition, seeking funding is also a challenge that we often face at work.
What do you see as the biggest challenge and greatest opportunity in building an alliance of patients’ organizations?
Patients’ organizations in different countries are often dealing with varied demographical, institutional, social, political and cultural systems. For example, after having worked in the USA and China, I realised that what should be prioritised in one society may not necessarily be the same in another. It is a challenging task for a global alliance to take all these different contexts into consideration. Differences in how these patients’ organizations are able to operate in their different systems can sometimes even trigger conflicting views among members. However, it is also through a global alliance like IAPO that different patients’ organizations can learn from what others have done and get inspired and empowered by these possibilities. Thus, the greatest opportunity also lies in the interaction between members.
Are you involved in national healthcare decision-making?
Yes. BAAD has been constantly communicating with national and local policy-makers to make policy recommendations for Alzheimer’s disease patients and populations at risk. Based on Chinese patients’ most urgent needs, BAAD has proposed “the Strategic Plan for China to Prevent and Treat Alzheimer’s disease” to the Ministry of Health, the National Development and Reform Commission (NDRC) and the China Association for Science and Technology (CAST). It is an integrated plan of action for government to operationalize the prevention and treatment of Alzheimer’s disease in China. The health sector in China has long claimed to place patients at the centre in its slogan. However, it is hard to say how much this has been put into practice. That’s why BAAD believes that the first step to promote patient-centred healthcare in China is through engaging all stakeholders in BAAD’s activities.
What keeps you busiest as a patient advocate?
It’s not possible to make real changes for patient-centred healthcare without engaging all stakeholders and maintaining decent relations with them. Therefore, our work has involved lots of tailored networking, advocacy and policy development. For example, in order to engage with the government, we have spent a lot of time writing project proposals in order to make policy suggestions that address the needs of Alzheimer’s disease patients. We also want to demonstrate to health professionals that they can gain valuable information from patients. We work with the general public, patients, their caregivers and families, health professionals, scientists, and policy-makers and we take time to create or enhance balanced relations with and among them.
How were patients involved in the International Symposium on Alzheimer’s Disease that you co-hosted in Beijing last year? We had one session specifically designed for attendees who were patients, their families or populations at risk. During the session, the topic covered Alzheimer’s disease, and other related diseases, as well as general care and healthy lifestyles for the elderly. There were great interactions and mutual learning between the audience and the speakers. I still remember how positive the audience’s response was after one patient’s empowering speech. This session presented the great potential of what Chinese patients are able to do.
If you could give one word of advice to other IAPO members what would it be?
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