EMEAPatient EngagementPatient concerns in healthcare digitalisation: Rising inequalitiesWith AI on the rise, promises of improved cross-border healthcare data exchange and new opportunities for research with the European Health Data Space, how do European patients feel about digitalisation? By Tjasa ZajcApril 22, 202405:53 AM.

EMEAPatient参与患者对医疗保健数字化的担忧：随着人工智能的兴起，不平等现象不断加剧，跨境医疗保健数据交换得到改善的承诺以及欧洲健康数据空间研究的新机会，欧洲患者对数字化有何感受？作者：Tjasa ZajcApril 22，202405:53 AM。

Photo: Alistair Berg/Getty Images

照片：阿利斯泰尔·伯格/盖蒂图片社

Digitalisation in healthcare holds the promise of optimising processes and expanding access to care. In some European countries such as Slovenia, Croatia, Estonia, Poland and Hungary, patients can access national portals that contain their prescriptions, referrals, discharge letters, etc. In other countries such as Belgium and Spain, patients can access regional portals.

医疗保健中的数字化有望优化流程并扩大获得护理的机会。在斯洛文尼亚，克罗地亚，爱沙尼亚，波兰和匈牙利等一些欧洲国家，患者可以访问包含处方，转诊，出院信等的国家门户。在比利时和西班牙等其他国家，患者可以访问区域门户。

In the Netherlands, Germany and Switzerland, individual healthcare providers offer their own patient portals. This means if a person visits multiple facilities, they must use different portals to access their health data. The European Health Data Space (EHDS) legislation aims to improve access to and control by individuals of their electronic health data, expand healthcare data accessibility across borders, and use healthcare data for patient acute care and research..

在荷兰、德国和瑞士，个人医疗保健提供者提供自己的患者门户。这意味着如果一个人访问多个设施，他们必须使用不同的门户来访问他们的健康数据。欧洲健康数据空间（EHDS）立法旨在改善个人对其电子健康数据的访问和控制，扩大跨境医疗保健数据的可访问性，并将医疗保健数据用于患者急性护理和研究。。

The range of changes tech could in theory bring to healthcare is extensive, including the following:

从理论上讲，技术可以为医疗保健带来广泛的变化，包括以下内容：

Faster access to and improved coordination of care by having a more direct channel with clinicians through an online portal.

通过在线门户与临床医生建立更直接的渠道，更快地获得护理并改善护理协调。

Time saved by opting for telemedicine over an in-person visit.

选择远程医疗而不是亲自就诊可以节省时间。

More precise diagnoses with the help of AI.

在AI的帮助下进行更精确的诊断。

Reduced burden on frontline staff due to tech-enabled capacity optimisations.

由于技术支持的容量优化，减少了一线员工的负担。

On the dark side, there are patient concerns: Will my data be exploited? Is it safe? Will I lose the connection with my doctor? After all, people, especially those in vulnerable health situations, crave human touch and a reassuring voice.

在黑暗的一面，有耐心的担忧：我的数据会被利用吗？它安全吗？我会失去与医生的联系吗？毕竟，人们，尤其是那些健康状况脆弱的人，渴望与人接触并发出令人放心的声音。

What do patients worry about?

患者担心什么？

The European Patients' Forum is an umbrella organisation of patient organisations across Europe, with its 79 members including disease-specific patient groups active on the EU and national levels in Europe.

欧洲患者论坛是欧洲患者组织的一个伞式组织，其79个成员包括活跃在欧盟和欧洲国家层面的特定疾病患者群体。

Patients have a number of concerns about the digital transformation of healthcare, according to Gözde Susuzlu Briggs, programme manager at the European Patients' Forum:

欧洲患者论坛项目经理Gözde Susuzlu Briggs表示，患者对医疗保健的数字化转型有许多担忧：

Digitalisation could exacerbate existing health inequalities, especially where there is a significant digital divide.

数字化可能会加剧现有的健康不平等，尤其是在存在严重数字鸿沟的地方。

There is a risk of unauthorized access to or breaches of patients' personal health information (PHI).

存在未经授权访问或违反患者个人健康信息（PHI）的风险。

A lack of interoperability is hindering effective care.

缺乏互操作性阻碍了有效护理。

There are worries about the affordability and accessibility of digital health solutions.

人们担心数字健康解决方案的可负担性和可获得性。

The shift to digital health requires an adjustment in how patients interact with healthcare systems.

向数字健康的转变需要调整患者与医疗系统的互动方式。

It is very difficult to stay on top of innovation in digital health.

在数字健康领域保持创新的领先地位是非常困难的。

'Patient communities know their disease areas quite well, but in terms of other advanced technologies or work that's around legislations and legal frameworks are topics that are quite new unless it's their profession,' Briggs said.

布里格斯说：“患者社区非常了解自己的疾病领域，但就其他先进技术或围绕立法和法律框架开展的工作而言，这些话题都是相当新的，除非是他们的专业。”。

Improving digital literacy and involving patients in the development of solutions are crucial for building public trust and ensuring a positive user experience.

提高数字素养并让患者参与解决方案的开发对于建立公众信任和确保积极的用户体验至关重要。

Education, explanation, collaboration

教育、解释、合作

On the EU level, several organisations work with and for patients on inclusion in data management and improving digital literacy. Non-profit organisation EUPATI (European Patients Academy on Therapeutic Innovation) provides education and training to increase the capacity and capability of patients and patient representatives in medicines R&D.

在欧盟层面，一些组织与患者合作并为患者服务，以纳入数据管理并提高数字素养。非营利组织EUPATI（欧洲患者治疗创新学会）提供教育和培训，以提高患者和患者代表在药物研发中的能力和能力。

In 2023, EUPATI designed a Digital Health module that provides an overview on digital health and its regulatory framework..

2023年，尤帕蒂设计了一个数字健康模块，概述了数字健康及其监管框架。。

'Based on the feedback so far, real-world evidence and real-world data seem to be specific areas where patients struggle to fully understand their role and relevant opportunities for involvement,' said Maria Dutarte, executive director at EUPATI.

EUPATI执行董事玛丽亚·杜塔特（MariaDutarte）说：“根据目前的反馈，现实世界的证据和现实世界的数据似乎是患者难以充分了解自己的角色和相关参与机会的特定领域。”。

More workshops and … national marketing?

更多研讨会和……全国营销？

'I haven't yet met a patient who wants all their healthcare from a computer, including myself,' said Kristof Vanfraechem, founder and CEO of Data for Patients – a European organisation focused on bringing data/digital experts who are also patients/caregivers into strategic change initiatives. 'We see digital as an opportunity to enhance human healthcare – tools to bring the humans – frontline workers and patients – closer together more efficiently and effectively to get or, even better, keep patients as healthy as possible at all times,' he said.

“我还没有遇到一个病人想要从计算机上获得包括我自己在内的所有医疗保健，”欧洲组织Data for Patients的创始人兼首席执行官克里斯托夫·范弗雷切姆（KristofVanfraechem）说。Data for Patients是一个专注于将同时也是患者/护理人员的数据/数字专家纳入战略变革计划的组织他说：“我们将数字视为一个加强人类医疗保健的机会，这是一种使人类——一线工作者和患者——更有效、更紧密地联系在一起的工具，可以使患者在任何时候都尽可能保持健康。”。

Vanfraechem emphasized that digital transformation is a complex change at the society level. Data for Patients invests in supporting patient organisations in an approach close to them..

Vanfraechem强调数字转型是社会层面的复杂变化。患者数据以接近患者的方式投资于支持患者组织。。

Education and awareness may seem to be a straightforward solution to increasing knowledge, managing expectations about digitalisation in the patient population, improving utilization of solutions and decreasing unnecessary tech-related fears, but someone needs to do the groundwork. Since not all patients are deeply involved with patient organisations, this leaves many responsibilities to decision-makers implementing and introducing new digital solutions.

教育和意识似乎是一个简单的解决方案，可以增加知识，管理患者群体对数字化的期望，提高解决方案的利用率，减少不必要的技术相关恐惧，但需要有人做基础工作。由于并非所有患者都深入参与患者组织，这给实施和引入新数字解决方案的决策者留下了许多责任。

Laws and regulations are only a starting point for successful digital transformations..

法律法规只是数字转型成功的起点。。

Gözde Susuzlu Briggs is the programme advisor for the 'Empowering Patients' track at the 2024 HIMSS European Health Conference & Exhibition, which is scheduled for 29-31 May 2024 in Rome. Kristof Vanfraechem is moderating the session 'Leveling Up! Harnessing Health Literacy to Achieve Equity.' Learn more and register..

Gözde Susuzlu Briggs是2024年HIMSS欧洲健康会议和展览“赋予患者权力”轨道的项目顾问，该展览定于2024年5月29日至31日在罗马举行。克里斯托夫·范弗雷切姆正在主持会议'Leveling Up！利用健康素养实现公平。”了解更多信息并注册。。

Topics: Government & Policy, Interoperability, Patient Engagement, Telehealth

主题：政府与政策、互操作性、患者参与、远程保健

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Digitalisation in healthcare holds the promise of optimising processes and expanding access to care. In some European countries such as Slovenia, Croatia, Estonia, Poland and Hungary, patients can access national portals that contain their prescriptions, referrals, discharge letters, etc. In other countries such as Belgium and Spain, patients can access regional portals.

医疗保健中的数字化有望优化流程并扩大获得护理的机会。在斯洛文尼亚，克罗地亚，爱沙尼亚，波兰和匈牙利等一些欧洲国家，患者可以访问包含处方，转诊，出院信等的国家门户。在比利时和西班牙等其他国家，患者可以访问区域门户。

In the Netherlands, Germany and Switzerland, individual healthcare providers offer their own patient portals. This means if a person visits multiple facilities, they must use different portals to access their health data. The European Health Data Space (EHDS) legislation aims to improve access to and control by individuals of their electronic health data, expand healthcare data accessibility across borders, and use healthcare data for patient acute care and research..

在荷兰、德国和瑞士，个人医疗保健提供者提供自己的患者门户。这意味着如果一个人访问多个设施，他们必须使用不同的门户来访问他们的健康数据。欧洲健康数据空间（EHDS）立法旨在改善个人对其电子健康数据的访问和控制，扩大跨境医疗保健数据的可访问性，并将医疗保健数据用于患者急性护理和研究。。

The range of changes tech could in theory bring to healthcare is extensive, including the following:

从理论上讲，技术可以为医疗保健带来广泛的变化，包括以下内容：

Faster access to and improved coordination of care by having a more direct channel with clinicians through an online portal.

通过在线门户与临床医生建立更直接的渠道，更快地获得护理并改善护理协调。

Time saved by opting for telemedicine over an in-person visit.

选择远程医疗而不是亲自就诊可以节省时间。

More precise diagnoses with the help of AI.

在AI的帮助下进行更精确的诊断。

Reduced burden on frontline staff due to tech-enabled capacity optimisations.

由于技术支持的容量优化，减少了一线员工的负担。

On the dark side, there are patient concerns: Will my data be exploited? Is it safe? Will I lose the connection with my doctor? After all, people, especially those in vulnerable health situations, crave human touch and a reassuring voice.

在黑暗的一面，有耐心的担忧：我的数据会被利用吗？它安全吗？我会失去与医生的联系吗？毕竟，人们，尤其是那些健康状况脆弱的人，渴望与人接触并发出令人放心的声音。

What do patients worry about?

患者担心什么？

The European Patients' Forum is an umbrella organisation of patient organisations across Europe, with its 79 members including disease-specific patient groups active on the EU and national levels in Europe.

欧洲患者论坛是欧洲患者组织的一个伞式组织，其79个成员包括活跃在欧盟和欧洲国家层面的特定疾病患者群体。

Patients have a number of concerns about the digital transformation of healthcare, according to Gözde Susuzlu Briggs, programme manager at the European Patients' Forum:

欧洲患者论坛项目经理Gözde Susuzlu Briggs表示，患者对医疗保健的数字化转型有许多担忧：

Digitalisation could exacerbate existing health inequalities, especially where there is a significant digital divide.

数字化可能会加剧现有的健康不平等，尤其是在存在严重数字鸿沟的地方。

There is a risk of unauthorized access to or breaches of patients' personal health information (PHI).

存在未经授权访问或违反患者个人健康信息（PHI）的风险。

A lack of interoperability is hindering effective care.

缺乏互操作性阻碍了有效护理。

There are worries about the affordability and accessibility of digital health solutions.

人们担心数字健康解决方案的可负担性和可获得性。

The shift to digital health requires an adjustment in how patients interact with healthcare systems.

向数字健康的转变需要调整患者与医疗系统的互动方式。

It is very difficult to stay on top of innovation in digital health.

在数字健康领域保持创新的领先地位是非常困难的。

'Patient communities know their disease areas quite well, but in terms of other advanced technologies or work that's around legislations and legal frameworks are topics that are quite new unless it's their profession,' Briggs said.

布里格斯说：“患者社区非常了解自己的疾病领域，但就其他先进技术或围绕立法和法律框架开展的工作而言，这些话题都是相当新的，除非是他们的专业。”。

Improving digital literacy and involving patients in the development of solutions are crucial for building public trust and ensuring a positive user experience.

提高数字素养并让患者参与解决方案的开发对于建立公众信任和确保积极的用户体验至关重要。

Education, explanation, collaboration

教育、解释、合作

On the EU level, several organisations work with and for patients on inclusion in data management and improving digital literacy. Non-profit organisation EUPATI (European Patients Academy on Therapeutic Innovation) provides education and training to increase the capacity and capability of patients and patient representatives in medicines R&D.

在欧盟层面，一些组织与患者合作并为患者服务，以纳入数据管理并提高数字素养。非营利组织EUPATI（欧洲患者治疗创新学会）提供教育和培训，以提高患者和患者代表在药物研发中的能力和能力。

In 2023, EUPATI designed a Digital Health module that provides an overview on digital health and its regulatory framework..

2023年，尤帕蒂设计了一个数字健康模块，概述了数字健康及其监管框架。。

'Based on the feedback so far, real-world evidence and real-world data seem to be specific areas where patients struggle to fully understand their role and relevant opportunities for involvement,' said Maria Dutarte, executive director at EUPATI.

EUPATI执行董事玛丽亚·杜塔特（MariaDutarte）说：“根据目前的反馈，现实世界的证据和现实世界的数据似乎是患者难以充分了解自己的角色和相关参与机会的特定领域。”。

More workshops and … national marketing?

更多研讨会和……全国营销？

'I haven't yet met a patient who wants all their healthcare from a computer, including myself,' said Kristof Vanfraechem, founder and CEO of Data for Patients – a European organisation focused on bringing data/digital experts who are also patients/caregivers into strategic change initiatives. 'We see digital as an opportunity to enhance human healthcare – tools to bring the humans – frontline workers and patients – closer together more efficiently and effectively to get or, even better, keep patients as healthy as possible at all times,' he said.

“我还没有遇到一个病人想要从计算机上获得包括我自己在内的所有医疗保健，”欧洲组织Data for Patients的创始人兼首席执行官克里斯托夫·范弗雷切姆（KristofVanfraechem）说。Data for Patients是一个专注于将同时也是患者/护理人员的数据/数字专家纳入战略变革计划的组织他说：“我们将数字视为一个加强人类医疗保健的机会，这是一种使人类——一线工作者和患者——更有效、更紧密地联系在一起的工具，可以使患者在任何时候都尽可能保持健康。”。

Vanfraechem emphasized that digital transformation is a complex change at the society level. Data for Patients invests in supporting patient organisations in an approach close to them..

Vanfraechem强调数字转型是社会层面的复杂变化。患者数据以接近患者的方式投资于支持患者组织。。

Education and awareness may seem to be a straightforward solution to increasing knowledge, managing expectations about digitalisation in the patient population, improving utilization of solutions and decreasing unnecessary tech-related fears, but someone needs to do the groundwork. Since not all patients are deeply involved with patient organisations, this leaves many responsibilities to decision-makers implementing and introducing new digital solutions.

教育和意识似乎是一个简单的解决方案，可以增加知识，管理患者群体对数字化的期望，提高解决方案的利用率，减少不必要的技术相关恐惧，但需要有人做基础工作。由于并非所有患者都深入参与患者组织，这给实施和引入新数字解决方案的决策者留下了许多责任。

Laws and regulations are only a starting point for successful digital transformations..

法律法规只是数字转型成功的起点。。

Gözde Susuzlu Briggs is the programme advisor for the 'Empowering Patients' track at the 2024 HIMSS European Health Conference & Exhibition, which is scheduled for 29-31 May 2024 in Rome. Kristof Vanfraechem is moderating the session 'Leveling Up! Harnessing Health Literacy to Achieve Equity.' Learn more and register..

Gözde Susuzlu Briggs是2024年HIMSS欧洲健康会议和展览“赋予患者权力”轨道的项目顾问，该展览定于2024年5月29日至31日在罗马举行。克里斯托夫·范弗雷切姆正在主持会议'Leveling Up！利用健康素养实现公平。”了解更多信息并注册。。