Report on Consultation on Patient Data

Healthwatch Wandsworth carried out a local consultation to gather residents' views on the Government's proposals for how NHS patient data should be used, shared and protected. The consultation focused on public understanding of the proposals, confidence in data security, communications about data sharing, and people's ability to control how their information is used. A total of 32 people responded, the majority being members of the public rather than health or social care professionals. 

Participants strongly supported the principle that patient data should be treated as seriously as NHS finances and clinical decision-making. Twenty-six of the 32 respondents agreed that data and information management should receive the same level of attention and oversight. Many respondents expressed concerns about hacking, confidentiality and the security of personal information. 

There was overwhelming support for comprehensive data protection training for NHS staff. Respondents felt it was extremely important that everyone who has access to patient information, not just IT specialists and managers, is properly trained in data security and appropriate information sharing. Many viewed staff competence as essential to maintaining public trust in the NHS. 

The consultation also revealed a strong desire for better communication from the NHS about patient data. Most respondents wanted more information and reassurance through methods such as posters, information campaigns and other communications. Several participants reported that this was the first time they had heard about the proposed changes, suggesting limited public awareness of the consultation and its implications. 

There was broad support for stronger penalties for misuse of patient information. Twenty-six respondents favoured stronger sanctions, including possible criminal penalties, for individuals or organisations that fail to protect data appropriately or use it improperly. Respondents felt penalties could deter misuse and increase accountability.

One of the most significant findings was uncertainty and scepticism about whether the proposals gave people sufficient control over their personal information. Only 12 respondents felt the proposals provided enough choice, while 20 either disagreed or were unsure. Many respondents questioned how the system would work in practice and expressed concern that the proposals represented an "illusion of choice" rather than genuine control. 

A recurring theme was opposition to the proposed opt-out system. Several respondents argued that consent should be obtained through an opt-in process instead, meaning personal data would not be shared unless explicit permission had been given. Others felt consent should be sought each time information is shared rather than through blanket permissions. 

Respondents expressed a range of preferences for how they would like to manage their data-sharing choices. The most popular option was discussing the issue directly with their GP, followed by online systems and telephone services. Comments highlighted the importance of offering multiple accessible options, particularly for people with literacy difficulties or other barriers to accessing information. 

A major finding was that most respondents did not know where to obtain further information about NHS data sharing or what the available opt-out options meant. Eighteen respondents said they would not know where to go for more information, indicating significant gaps in public understanding.

Confidence in the proposals was relatively low. Nearly half of respondents stated they were not confident that the NHS would be able to keep their data safe or ensure it was always used appropriately. Concerns centred on previous data breaches, the potential for human error, inappropriate sharing, commercial use of data, and the risk of information being mishandled for financial gain. 

Healthwatch Wandsworth concluded that residents recognised the potential benefits of data sharing for improving services and developing new treatments, but many remained concerned about privacy, consent and data security. Respondents consistently called for clearer information, greater transparency, stronger safeguards and more accessible communication to help people make informed decisions about how their information is used. The findings suggested that public confidence in the proposed system would depend heavily on improving awareness, strengthening protections and ensuring individuals feel they have genuine control over their personal data.