Patient Advocacy First: Putting the Patient’s Voice at the Heart of Cancer Care

患者权益至上：将患者的声音置于癌症护理的核心

4th Cancer Conclave Highlights Need for Transparency in Clinical Trials and Patient Support

第四届癌症大会强调了临床试验和患者支持需要透明度

UHAPO Health Services held its 4th Annual Cancer Conclave on Tuesday, bringing together, patients, doctors, cancer survivors, caregivers, policymakers, industry representatives and journalists for an open and honest conversation on what cancer care in India looks like from the other side.

UHAPO健康服务公司于周二举行了第四届年度癌症大会，将患者、医生、癌症幸存者、护理人员、政策制定者、行业代表和记者聚集在一起，就印度癌症护理的另一面展开了公开而诚实的对话。

The virtual conclave, was centred on the theme “Patient Advocacy First: Putting the Patient’s Voice at the Heart of Cancer Care.” Discussions focused on the realities patients face at every stage of their journey from early symptoms and diagnosis to treatment decisions, financial stress and life after cancer..

虚拟会议围绕“以患者倡导为先：将患者的声音置于癌症护理的核心”这一主题展开。讨论集中在患者在从早期症状和诊断到治疗决策、经济压力以及癌症后生活的每个阶段所面临的现实问题上。

The conclave saw participation from leading experts and stakeholders from across the country, including

这次会议汇集了来自全国各地的领先专家和利益相关者，包括

Dr. Sewanti Limaye

林玛耶·塞万提博士

, Director, Precision Oncology, Sir H N Reliance Hospital, Mumbai;

，精准肿瘤学主任，Sir H N Reliance医院，孟买；

Dr. Nandini Menon

南迪尼·梅农博士

and

和

Dr. Minit Shah

米尼特·沙阿博士

, Professors and Medical Oncologists, Tata Memorial Hospital;

教授和肿瘤内科医生，塔塔纪念医院；

Dr. Raajit Chanana

拉吉特·查纳纳博士

, Medical Oncologist, Dharamshila Narayana Superspeciality Hospital, Delhi;

，医学肿瘤学家，德里达拉姆希拉纳拉亚纳超级专科医院；

Dr. Bikas Medhi

比卡斯·梅迪博士

, Chairman, IUPHAR – Basic & Translational Section;

，主席，IUPHAR - 基础与转化部门；

Dr. Sudha Chandrashekar

苏达·钱德拉谢卡尔博士

, former Executive Director, National Health Authority (NHA);

，前执行董事，国家卫生局（NHA）；

Mr. Prabhat Sinha

普拉巴特·辛哈先生

, Director – Public & Government Affairs, Boehringer Ingelheim;

，董事——公共与政府事务，勃林格殷格翰公司；

Dr. Yogini Patil,

尤吉尼·帕蒂尔博士，

HOD – Obs and Gyne, Bhakti Vedanta Hospital, Mira Road, Director of Health Services,

HOD - 观察与妇产科，Bhakti Vedanta医院，米拉路，卫生服务总监，

Government of Maharashtra,

马哈拉施特拉邦政府，

and

和

Ms. Kuheli Dasgupta

库赫利·达斯古普塔女士

, Senior Consultant, Department of Pharmaceuticals, Government of India, among others.

，印度政府药品部高级顾问等。

Opening the conclave,

开启秘密会议，

UHAPO Founder Vivek Sharma shared:

UHAPO创始人维韦克·夏尔马分享道：

When the Union Budget 2026–27 came out, I didn’t read it like a policy document. I read it thinking of the families we speak to every day at Uhapo the ones who are doing their best to hold on, while cancer makes life feel uncertain. The Budget’s

当《2026-27年联邦预算》出台时，我没有像读政策文件那样去阅读它。我是在想着我们每天在Uhapo交谈的家庭——那些在癌症让生活充满不确定性的同时，尽力坚持下去的家庭——的情况下阅读的。预算的

₹1.06 lakh crore allocation for Health (MoHFW)

为卫生部（MoHFW）分配了1.06万亿卢比的预算。

roughly a

大约一个

10% rise over last year’s revised numbers

比去年修订后的数字增长了10%

felt like a message that this fight is being taken more seriously.

感觉像是一个信息，表明这场战斗正在被更加认真地对待。

What gave me real hope were the people-first announcements:

让我真正感到充满希望的是以人为本的声明：

training 1.5 lakh caregivers

培训15万护理人员

and creating

并创造

5 Regional Medical Hubs

5个区域医疗中心

with diagnostics and rehab support. Because in cancer care, it’s not only the patient who needs care it’s the entire home.

提供诊断和康复支持。因为在癌症护理中，需要关怀的不仅是患者，而是整个家庭。

And yes, the affordability steps matter too like

是的，可负担性的步骤也很重要，比如

customs duty relief on 17 cancer drugs

17种抗癌药物的关税减免

and

和

Biopharma SHAKTI (₹10,000 crore over five years)

生物制药SHAKTI（五年内10,000亿卢比）

. But we all know- announcements help only when they reach the last mile.

. 但我们都明白——公告只有传达到最后一英里时才有帮助。

That’s exactly why we’re doing

这正是我们这样做的原因

The Cancer Conclave 26

癌症大会26

. Not just as an observatory or celebration event, but as a working table where patients, caregivers, doctors, NGOs, industry, and policymakers sit together and convert intent into action.

不仅作为一个观察或庆祝活动，而是作为一个工作平台，让患者、护理人员、医生、非政府组织、行业和政策制定者坐在一起，将意图转化为行动。

And when the Conclave ends, we won’t leave it at “good discussion”. We’ll publish a

当秘密会议结束时，我们不会只停留在“好的讨论”。我们会发布

clear, action-focused stakeholder report

清晰、以行动为导向的利益相关者报告

with a

带着一个

12–24 month roadmap

12-24个月路线图

, so the real work starts immediately after.

，所以真正的工作就在之后立即开始。

Doctors also noted that truly informed decision-making remains a challenge. Low awareness about cancer, combined with limited consultation time, makes it difficult for oncologists to counsel patients across physical, emotional, social, financial and rehabilitative dimensions, in addition to explaining treatment options and side effects.

医生们还指出，真正实现知情决策仍然是一项挑战。对癌症的认识不足，加上问诊时间有限，使得肿瘤科医生难以在生理、情感、社会、经济和康复等多个维度上为患者提供指导，更不用说解释治疗方案和副作用了。

As a result, emotional, nutritional and rehabilitation support often remains secondary, despite playing a major role in patient outcomes and quality of life..

因此，尽管情感、营养和康复支持在患者的治疗效果和生活质量方面起着重要作用，但往往仍然处于次要地位。

Dr Raajit Chanana, Medical Oncologist (Delhi), said:

德里医学肿瘤学家Raajit Chanana博士说：

“Seeing social impact platforms become more transparent gives clinicians greater confidence that support is reaching the right place. But no single channel can solve this alone government schemes, insurance, NBFCs, CSR, and crowdfunding must work together on one table. And while we strengthen treatment access, we must invest far more in prevention because prevention will always be better than cure.”.

“看到社会影响平台变得更加透明，这让临床医生更有信心支持能够到达正确的地方。但是，没有任何一个渠道可以单独解决这个问题，政府计划、保险、非银行金融机构、企业社会责任和众筹必须协同合作。在加强治疗可及性的同时，我们必须更多地投资于预防，因为预防永远胜于治疗。”

The conclave also highlighted gaps in affordability and access. While patient assistance programmes offered by pharmaceutical companies do exist, speakers noted that they are often complex, poorly understood and fail to reach those who need them most. Additionally, the financial burden of cancer extends well beyond treatment costs, with travel, accommodation, loss of income and caregiving expenses pushing many families into distress.

这次大会还强调了在可负担性和可及性方面的差距。尽管制药公司提供的患者援助计划确实存在，但发言者指出，这些计划通常复杂、难以理解，并且未能惠及最需要帮助的人群。此外，癌症带来的经济负担远远超出了治疗费用，旅行、住宿、收入损失和护理开支使许多家庭陷入困境。

Experts called for exploring top-up options within existing government health schemes to address these gaps and stressed the need to include molecular diagnostics under government coverage to enable more precise and effective treatment planning..

专家呼吁在现有的政府医疗计划中探索补差选项以弥补这些缺口，并强调需要将分子诊断纳入政府覆盖范围，以实现更精准有效的治疗规划。

One of the most closely followed sessions featured health journalist and

其中一个最受关注的会议邀请了健康记者和

cancer survivor Sanjukta Sharma, along with Hodgkin’s Lymphoma survivor Gopaalan

癌症幸存者桑朱克塔·夏尔马，以及霍奇金淋巴瘤幸存者戈帕兰

, who spoke about the stark difference between observing cancer care and living through it. They highlighted challenges around referrals, paperwork, uncertainty and financial anxiety.

，他谈到了观察癌症治疗和亲身经历癌症治疗之间的巨大差异。他们强调了转诊、文书工作、不确定性以及财务焦虑方面的挑战。

Other sessions

其他会话

covered early detection, care navigation, financing cancer care, policy gaps, clinical trials, survivorship and rehabilitation, with repeated emphasis on building systems that support patients beyond clinical treatment alone. Speakers also raised an important policy question why cancer is still not a notifiable disease in India noting that better data could significantly improve planning, funding and outcomes..

涵盖了早期检测、护理导航、癌症护理融资、政策缺口、临床试验、生存与康复等内容，并反复强调建立支持患者不仅仅是临床治疗的系统。演讲者还提出了一个重要的政策问题——为什么癌症在印度还不是一种需报告的疾病——指出更好的数据可以显著改善规划、资金投入和结果。

“Trust starts with simple, honest communication. If a patient can’t understand what they’re signing, it isn’t real consent. We need to explain trials in clear, everyday language keep the basics crisp, and then share more details if the patient and family want to go deeper.”,

“信任始于简单、诚实的沟通。如果患者无法理解他们签署的内容，那就不是真正的知情同意。我们需要用清晰、日常的语言解释试验，保持基本信息简明，并在患者和家属希望深入了解时再分享更多细节。”

Dr Akhil Kapoor, HOD, TMC, Varanasi.

阿基尔·卡普尔博士，TMC瓦拉纳西分校主任。

Dr. Ghanashyam Biswas Sr Medical Oncologist from Bhubaneswar said

来自布巴内什瓦尔的资深肿瘤内科医生甘纳沙姆·比斯瓦斯博士说

“Many consent forms are so long that people end up signing without truly understanding just like bank paperwork. What matters is the ‘mota-moti’ clarity: why this trial is right for them, what the main risks are, what support exists if something goes wrong, and what it means for their care. Give it in the local language, let families take it home for a day or two, and then sit with their questions that’s when consent becomes genuinely informed.”.

“许多同意书内容太长，导致人们最后就像签署银行文件一样，没有真正理解就签了。重要的是‘大致’的清晰度：为什么这项试验适合他们，主要风险是什么，如果出现问题有什么支持，这对他们的治疗意味着什么。用当地语言提供，让家属带回家一两天，然后坐下来解答他们的疑问——这才是真正知情的同意。”

The conclave concluded with a call to build a national patient advocacy network, ensuring patient voices are heard not only in hospitals, but also in policy and decision-making spaces.

会议结束时呼吁建立一个全国性的患者倡导网络，确保患者的声音不仅在医院里被听到，在政策和决策领域也能被倾听。

Mr. Umanath Singh,

乌马纳特·辛格先生，

Senior Journalist at Prasar Bharati, stressed that journalists need better training and deeper understanding of health topics so their reporting remains responsible and sensitive. He also urged the audience to not accept every cancer-related message they read, hear, or see first verify it through reliable sources, and only then pass it on..

印度广播公司资深记者强调，记者需要更好的培训和对健康话题的更深入理解，以确保他们的报道负责任且敏感。他还敦促观众不要轻信每一条与癌症相关的信息，而是首先通过可靠来源进行核实，然后再进行传播。

The vote of thanks was delivered

致谢投票已完成

UHAPO Co-founder Mr. Umeshnath Sharma.

UHAPO联合创始人乌梅什纳特·夏尔马先生。

Other members who participated in the conclave included

其他参与秘密会议的成员包括

Dr. Smriti Khanna

斯密里特·卡纳博士

, Palliative Care Consultant, P D Hinduja Hospital, Mumbai;

，姑息治疗顾问，P D Hinduja医院，孟买；

Dr. Satish Sharma

萨蒂什·夏尔马博士

, Medical Oncologist, Ranchi;

医学肿瘤学家，兰契；

Dr. Amit Kumar

阿米特·库马尔博士

, Medical Oncologist, Patna;

医学肿瘤学家，巴特那；

Mr. Gautam Gouri

高塔姆·古里先生

, cancer caregiver, Patna;

，癌症护理人员，巴特那；

Dr. Rup Jyoti Sarma

鲁普·乔蒂·萨尔马博士

, Medical Oncologist, Guwahati;

，医学肿瘤学家，古瓦哈提；

Mr. Kumar Subham

库马尔·苏巴姆先生

, Founder, India House, a public policy think tank;

，创始人，印度之家，一家公共政策智库；

Dr. Akhil Kapoor,

阿希尔·卡普尔博士，

HOD – Medical Oncology, TMC Varanasi;

医学肿瘤学主任，瓦拉纳西TMC；

Dr. Ghanashyam Biswas

甘纳什亚姆·比斯瓦斯博士

, Senior Medical Oncologist, Bhubaneswar;

，资深肿瘤内科医生，布巴内斯瓦尔；

Dr. Venkata Pradeep

维恩卡塔·普拉迪普博士

, Medical Oncologist, Guwahati;

，医学肿瘤学家，古瓦哈提；

Dr. Mridul Malhotra

米里杜尔·马尔霍特拉博士

, Medical Oncologist, Delhi;

，医学肿瘤学家，德里；

Dr. Amit Agarwal

阿米特·阿加瓦尔博士

, Medical Oncologist, AIIMS Raipur;

医学肿瘤学家，AIIMS赖布尔；

Dr. Mounika Boppana

莫尼卡·博帕纳博士

, Medical Oncologist, Hyderabad;

，医学肿瘤学家，海得拉巴；

Dr. Urvashi Prasad

乌尔瓦希·普拉萨德博士

, public policy expert living with lung cancer;

，与肺癌共存的公共政策专家；

Ms. Sanjukta Sharma

桑祖克塔·夏尔马女士

, senior health journalist and cancer survivor;

，资深健康记者和癌症幸存者；

RJ Arvind

阿文德·RJ

from Radio Nasha;

来自 Radio Nasha；

Mr. Gopaalan

戈帕兰先生

;

；

Ms. Shalini Verma

沙莉尼·维尔马女士

, cancer caregiver;

，癌症护理人员；

Ms. Rashi Kapoor

拉希·卡普尔女士

, living with sarcoma;

，与肉瘤共存；

Mr. Jose Peter

何塞·彼得先生

, CEO, Arogya Finance;

，首席执行官，Arogya Finance；

Mr. Anoj Vishwanathan

阿诺吉·维什瓦纳坦先生

, Co-founder, Milaap;

，联合创始人，Milaap；

Mr. James Rajakumar

詹姆斯·拉贾库马尔先生

, India Business Head, Natco;

印度商务主管，纳特科公司；

Mr. Umeshnath Sharma

乌梅什纳特·夏尔马先生

, Co-founder, UHAPO;

，联合创始人，UHAPO；

Dr. Aishwarya Rohatgi

罗哈特吉·艾什瓦arya博士

, Founder, Saathi Cares;

创始人，Saathi Cares；

Ms. Shilpa Arora

希拉·阿罗拉女士

, cancer caregiver;

，癌症看护人；

Mr. Umanath Singh

乌马纳特·辛格先生

, Senior Journalist, Prasar Bharati;

，资深记者，普拉萨尔·巴拉蒂；

Ms. Bhawna Mardolkar

布拉娜·马多尔卡尔女士

, AML survivor;

，AML幸存者；

Mr. Vijay Acharya

维贾伊·阿查里亚先生

, living with pancreatic cancer;

，与胰腺癌共存；

Mr. Amit Shenoy

阿米特·谢诺先生

, blood cancer survivor;

，血液癌症幸存者；

Dr. Prriya Eshpuniyani

普丽娅·埃什普尼亚尼博士

, Surgical Oncologist, Mumbai; and

，外科肿瘤学家，孟买；以及

Dr. Swati Jha

斯瓦蒂·贾博士

, Director of Health Outreach, Sir H N Reliance Hospital,

健康宣传主任，Sir H N Reliance医院，

Mumbai

孟买

.

。

The event was supported by Mickey Amogh Foundation, Cancer Research and Statistic Foundation, StatsCure, AstraZeneca, NATCO and Pfizer.

该活动得到了米奇·阿莫格基金会、癌症研究与统计基金会、StatsCure、阿斯利康、NATCO 和辉瑞的支持。