Holding personal information in a disease-specific register: the perspectives of people with multiple sclerosis and professionals on consent and access
Holding personal information in a disease-specific register: the perspectives of people with multiple sclerosis and professionals on consent and access
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DOI：
10.1136/jme.2008.025304
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发表时间：
2009-02-01
影响因子：
4.1
通讯作者：
Zajicek, J.
中科院分区：
文献类型：
--
作者：
Baird, W.;Jackson, R.;Zajicek, J.
目的：确定多发性硬化症（MS）患者和专业人员对英国拟议MS登记中的保密性、同意和数据访问的看法。设计：采用焦点小组（10）和访谈（13）的定性研究。设置：英格兰和北方爱尔兰。参与者：68名MS患者、神经科医生、MS护士、卫生服务管理专业人员、研究人员、制药公司代表和社会护理专业人员。MS患者对使用他们的个人信息以促进服务提供和研究表达了开放和利他的观点，信任负责任的监护和合法使用他们的信息。与会者建议MS患者应能够使用同意程度选择其个人参与登记的程度。与会者一致认为，登记册的查阅应由一个由一系列利益攸关方组成的监护委员会管理。患有MS的人不希望他们的详细信息被营销机构使用，并且不认为这是对他们数据的合法使用。虽然与会者对登记册在促进研究方面可以发挥的作用持积极态度，但与会者认为，制药行业对数据的访问应由监护委员会管理。患有多发性硬化症的人担心他们的雇主是否能够访问他们的个人信息。专业人士更谨慎的人与MS在他们的方法来使用患者的个人数据在register.Conclusions：虽然所有的利益相关者都积极的MS登记册的好处，这样的资源的发展必须纳入强大的数据安全和监护措施，以确保，而机会最大化，个人的隐私和专业人士的法律的挑战的风险是避免的。
Objective: To determine the views of people with multiple sclerosis (MS) and professionals in relation to confidentiality, consent and access to data within a proposed MS register in the UK.Design: Qualitative study using focus groups (10) and interviews (13).Setting: England and Northern Ireland.Participants: 68 people with MS, neurologists, MS nurses, health services management professionals, researchers, representatives from pharmaceutical companies and social care professionals.Results: People with MS expressed open and altruistic views towards the use of their personal information to facilitate service provision and research, placing trust in responsible guardianship and legitimate use of their information. Participant's proposed that people with MS should be able to select their individual level of involvement in a register using levels of consent. It was agreed that access to the register should be governed by a guardianship committee composed of a range of stakeholders. People with MS did not wish their details to be used by marketing agencies and did not consider this a legitimate use of their data. Whilst participants were positive of the role a register could play in promoting research, participants felt that access to data by pharmaceutical industries should be administered by the guardianship committee. People with MS are concerned should their employers be able to access their personal information. Professionals were more cautious than people with MS in their approach to the use of patient personal data within a register.Conclusions: Whilst all stakeholders were positive of the benefits of an MS register, development of such a resource must incorporate robust data security and guardianship measures in order to ensure that, whilst opportunities are maximised, risks to the privacy of individuals and legal challenges to professionals are avoided.