National approach to
information sharing
Streamlining access to relevant healthcare data to meet research and industry needs.
Since it was set up, IHDP has been stimulating national debate on the challenges of Information Governance (IG) in the healthcare sector and ways to overcome them.
The recent increase in healthcare data collection and technical advances in data handling present opportunities for more efficient access to, and sharing of, clinical data. However, ensuring that the data is used appropriately, securely and legally, is a challenge. A robust and proportionate Information Governance strategy is key. This approach will protect the privacy of patients without hindering research and innovation.
Working with stakeholders, IHDP’s goal has been to define a clear vision for Scotland’s future approach to Information Governance, so that healthcare data can be used more easily to improve the quality of patient care and patient outcomes.
National debate has provided the springboard to consensus building around the future direction for Information Governance in health and social care data utilisation and sharing in Scotland, led by the Scottish Government.
- The varying perspectives held by stakeholders in this area need to be fully understood and reconciled before progress can be made.
- Use of consensus building meetings can be useful to surface issues that need to be addressed nationally.
Implementing Treatment Summaries across Scotland.
IHDP brought together key stakeholders to agree what information should be included in cancer Treatment Summaries across Scotland. Our 2017 report lays out the evidence for the benefits of using Treatment Summaries in cancer care, as well as recommendations for their systematic implementation.
Treatment Summaries are documents completed in secondary cares that provide a record of the treatment received, potential side effects, consequences of treatment, and signs and symptoms of recurrence, for GPs and patients/carers.
With clinical and Scottish Government agreement in place for Treatment Summaries, NHS Education for Scotland Digital Service (NDS) were asked to start designing a technical solution for their implementation across Scotland.
Treatment Summaries will empower patients to feel more confident in their ability to manage their own health. Importantly, they will streamline communication between hospital and primary care, leading to better care following treatment.
This development work, focusing on two Health Boards and tumour types (head and neck in NHS Lothian and prostate in Greater Glasgow and Clyde), provides the foundations for offering Treatment Summaries across Scotland.
A national approach to delivery will ensure consistency for patients and those involved in their care.
- Establishing an evidence base, and dovetailing with national policy, provides a springboard for action.
- A collaborative approach can identify where investment of effort is needed across stakeholder groups.
- It is crucially important to involve the right stakeholders at the right time (in this case two NHS Boards) to both inform development and contribute to user testing.
Improving the efficiency and effectiveness of multidisciplinary teams.
IHDP worked with the Scottish HepatoPancreatoBiliary (HPB) Network to develop clinical consensus for key data items required for referral to specialist treatment.
In the UK, cancer patient care is discussed in multidisciplinary team (MDT) meetings, which include representatives from each of the disciplines involved in the diagnosis and management of the patient in question.
Although there is a strong evidence base demonstrating that MDT working improves cancer patient outcomes, there are barriers to their effective implementation. These include accessing complete information, technical solutions to bringing it together and resource constraints.
Agreed key data items are now part of a referral to specialist treatment through the HPB Network.
The HepatoPancreatoBiliary cancer MDT is complex and can require access to clinical data from across Health Boards. Learning from this work could underpin similar developments in the management of other cancer groups.
- While templates to capture the compulsory key data items were developed and agreed, they are not being used consistently across Scotland. This clearly demonstrates that work is still required to change practices on the ground.
Programmes of work
An overview of IHDP-led activities and learning.