Voluntary Health Scotland has responded to the Scottish Government’s consultation on its Data Strategy for Health and Social Care.
Our engagement with the strategy:
VHS has undertaken significant engagement and research with our members over the last few years on digital healthcare and data. During the pandemic we all experienced an acceleration in the use of digital healthcare and much more frequent use of healthcare data in the daily reporting of COVID-19 cases. In this context VHS has been working to ensure no one is left behind and health inequalities are not worsened by advances in technology.
In February 2022 we held a consultation engagement event with our members and the Scottish Government’s Directorate for Digital Health & Care to garner the third sector’s priorities for the data strategy. This gave our members the opportunity to feed into the strategy as it was being developed by government. Our response to this consultation takes into account the views expressed during that event and our previous engagement with members on data in health and social care.
The overarching vision of this strategy is “to improve the health and wellbeing of the Scottish population through innovative, collaborative, and ethical use of data.” We endorse that vision and welcome the ambition to “empower individuals to have greater access to, and greater control over, their own health and social care data.” We strongly believe this will improve people’s experience of the health and social care system and will empower them to better understand their right to health.
Our response urges for the third sector to be recognised as a valued partner in the delivery of health and social care services. Our sector is a trusted voice in communities, a valuable resource in research and a vital partner in the delivery of health and social care services. However, without consistent access to data we are constantly working with one hand tied behind our back. We need access to data to improve delivery and ensure our services are tailored to the communities and people we serve. We also need to be recognised as a rich source of data on the ground working with communities.
The recent information revolution has allowed more people to have access to the most up-to-date information; however, inequities in access persist. The pandemic highlighted how many people had access to up-to-date information via social media and other digital platforms; however, those without access to digital had to wait for accessible and timely information and in some cases struggled to get this at all. The same is the case with data, this strategy must have tackling health inequalities at its heart and to do that we must significantly improve the data we collected on inequalities. We welcome the commitment that the strategy will “ensure an inclusive approach to any solution or ambition for those who do not or cannot access services digitally.” Diversity needs to be built into the creation of this strategy to ensure no one is left behind.
Patient confidentiality and trust must also be central to the data sharing ambitions in the strategy. We welcome the concept of patients being in control of their own health and care record. We believe this will improve trust in services and empower patients to better understand their own health record and rights. We are hopeful the record may also prevent patients from having to constantly retell their story which we know from our members is extremely frustrating for patients and erodes their confidence in health services. Basing the collection, storage and use of this data on ethical principles is paramount. Some marginalised groups deeply distrust public services due to their own experiences of discrimination, inequality and fear of how these services interact. A significant amount of trust will need to be built between services and marginalised communities as part of this strategy. The strategy itself will not solve all these problems, so it must be mindful of the people who will likely be missed or reluctant to share their data.
You can read our full response here: VHS Consultation Response Data Strategy for health and social care.
For more information please contact Kimberley Somerside, Policy & Engagement Lead.