From Slogan to System: How Patient Engagement Is Reshaping China's Healthcare Ecosystem

Author: Daphane

In the healthcare industry, “patient-centered care” has long become a familiar mantra, embedded in corporate visions, forum themes, and daily communications. However, as this phrase has been overused, its practical significance has often been diluted, even reduced to mere formalistic rhetoric. Stakeholders both within and outside the industry are now asking: How can we translate this concept from slogan into action, and from ideal into reality? This requires not only conceptual innovation but also institutional safeguards and ecosystem-wide collaboration.

Patients, as the core of the healthcare system, are seeing their voices and participation shift from the margins to the center. From policy-making to treatment decisions, and from individual expression to organized action, the mobilization and institutionalization of patient power have become key drivers of industry transformation. However, this path remains fraught with challenges: How can dispersed “voices” be translated into systematic “institutions”? How can each link in the ecosystem achieve “resonance at the same frequency”?

In the current development of the healthcare sector, patient voices are increasingly becoming a significant driving force in advancing research and development, improving systems, and informing medical decision-making.

As the direct recipients of policies, patients are able to evaluate policy feasibility from a practical implementation perspective, including operational difficulty, patient experience, and satisfaction, thereby reducing resistance to policy adoption and ensuring smooth implementation. Such participation not only improves policy compliance but also enhances patients’ sense of belonging and self-management capabilities, fostering a collaborative doctor-patient framework for prevention and control.

Wu Jing, Director of the National Center for Chronic and Noncommunicable Disease Control and Prevention at the Chinese Center for Disease Control and Prevention, cited chronic diseases as an example to analyze that they impose a heavy burden, involve prolonged disease courses, and have complex etiologies; therefore, their management must rely on multi-sectoral collaboration and public participation. Engaging patients in the policy formulation and implementation process helps bridge the gap between policy design and real-world needs, and, when combined with evidence-based science, enhances the precision and operability of policies.

Wu Jing pointed out that chronic diseases are characterized by their long-term nature, progressive course, and frequent multimorbidity. The progression from onset to the development of complications is protracted and often includes a latent period. Patients require long-term treatment and management throughout this process, which significantly impacts their quality of life and overall health status. Therefore, the prevention and control of chronic diseases is not a phased endeavor but a long-term task spanning the entire life cycle of patients.

Furthermore, the etiology of chronic diseases encompasses a multitude of factors, including genetics, environment, and lifestyle, necessitating joint efforts from the entire society for their prevention and control. Patients, by virtue of their profound understanding of their own conditions and needs, have become indispensable participants in policy formulation. Their involvement helps ensure that policies are more aligned with real-world practices, facilitating a transition from “unidirectional treatment” to “bidirectional collaborative management.”

Li Yi, Director of Communications for the Chronic Skin Disease Care Fund under the Beijing Kangmeng Charity Foundation, pointed out: “Patient organizations understand patient needs; enterprises command drug innovation and R&D; digital service platforms provide data and tools; and public welfare institutions excel at resource mobilization and social engagement. Each of us holds a piece of the puzzle; only by coming together can we form a complete picture and build a more resilient ecosystem.”

From a global perspective, patient engagement mechanisms have been institutionalized in many countries. For instance, the United States has established mature mechanisms for patient organization involvement, with robust feedback channels in place. In the United Kingdom, under the National Health Service (NHS) system, it is explicitly required that major projects include patient representatives, whose opinions are regarded as important reference points. These mechanisms ensure that patients’ voices exert substantial influence on policy formulation.

In China, patient engagement is transitioning from being “encouraged” to becoming a “clear requirement.” Many regions are actively exploring new pathways for patient involvement through formats such as patient representative symposiums and policy deliberation meetings. The number of patient organizations continues to grow, building bridges of communication between patients and the government, driving the expansion of participation from “fragmented” involvement to “whole-process” engagement, and upgrading its format from offline meetings to an integrated online-offline model.

Despite the continuous improvement of patient engagement mechanisms, numerous challenges remain: the engagement framework is still inadequate, with passive participation outweighing active involvement; patient organizations have limited capacity and lack in-depth understanding of policies as well as the ability to articulate their perspectives; willingness to participate is low; research methods and skills need enhancement; and the effectiveness of participation along with safeguarding mechanisms requires further refinement.

To address these challenges, efforts should be focused on three key areas: first, strengthening public awareness campaigns to foster a cultural environment that respects patients’ voices; second, providing resource support and capacity building, including training programs and charitable donations; and third, promoting the standardization, institutionalization, and sustainability of patient engagement mechanisms by establishing full-process participation systems to ensure that patient input is fully incorporated at every stage, from project initiation, research, and feasibility studies to evaluation.

In fact, in recent years, the Chinese government has increasingly taken into account the voice of patients when formulating relevant policies and guidelines. For instance, to promote the development of new drugs, the state encourages the incorporation of patient perspectives into pharmaceutical R&D, reinforcing the concept of “patient-centric” drug development. In August 2022, the Center for Drug Evaluation (CDE) of China’s National Medical Products Administration released the Guiding Principles for General Considerations on Organizing Patient Engagement in Drug Development (Draft for Comment), the Technical Guidelines for Patient-Centric Clinical Trial Design, and the Technical Guidelines for Patient-Centric Benefit-Risk Assessment in Clinical Trials.

If institutionalization represents “vertical” deepening, then collaboration signifies “horizontal” expansion. For three consecutive years, the Novartis Patient Day has brought together representatives from various sectors, including patient organizations and medical experts, to jointly explore ways to better serve patients.

At Novartis’ inaugural Patient Day, numerous patient organizations and industry stakeholders were brought together for the first time to discuss the value of patient engagement across the entire product lifecycle of medicines, share classic case studies on expanding access to medications, and explore innovative solutions to support patients at different stages. The second Patient Day expanded the discussion to areas such as health literacy and patient advocacy, sharing industry best practices and future development directions, thereby advancing “patient-centric” industry practices toward high-quality development.

At the third annual Patient Day, Novartis positioned itself as a “leader,” aspiring to serve not only as a listener but also as a driver and leader, fostering multi-stakeholder collaboration and transforming patient power into a driving force for the shared progress of the industry and society.

Li Yao, President and Managing Director of Novartis China, stated that Novaris has always upheld its long-term commitment to patients in China, striving to translate this commitment into tangible actions. With the support of partners across various sectors, the company has continued to grow, achieving a leap from safeguarding and surpassing expectations to leading the way. “We look forward to continuing our collaboration with peers from all sectors, leveraging Patient Day as a platform to deepen communication and pool efforts, thereby promoting the high-quality development of a patient-centric healthcare ecosystem, and becoming China’s most valuable and trusted pharmaceutical and healthcare partner.”

Ma Tao, Secretary-General of the Beijing Pain and Challenge Public Welfare Foundation, emphasized that building a “patient-centric” ecosystem has never been a solitary effort by any single party, but rather a synergy of multi-stakeholder strengths. Its value lies not only in disease treatment itself, but more critically in providing patients with comprehensive, multi-dimensional companionship and support throughout their care journey. “We need to continue working together to consolidate current experiences and explorations into sustainable mechanisms, ensuring that patients’ tangible needs are recognized and addressed, and that they truly feel supported and understood throughout their entire health journey.”

Gu Hongfei, a patient organization development advisor at the Guangzhou Kapok Foundation for Cancer and Rare Diseases, also noted that in the practice of serving patients, it has become increasingly clear that the value of patient organizations lies not only in building communities and fostering mutual support but also in proactively addressing the specific needs of patients at different stages. The needs of patients during the early post-diagnosis phase differ from those during long-term treatment; although these needs may seem fragmented, they are highly authentic. It is precisely for this reason that patient organizations need to introduce more professional tools and methods to establish a management system covering the entire disease course, thereby helping patients avoid unnecessary detours. Meanwhile, by focusing on patients’ urgent needs, patient organizations should collaborate with clinical physicians, researchers, and other stakeholders to facilitate breakthroughs in diagnosis and treatment through the process of solving patients’ practical problems.