NHS Future Forum: Part 2: Continuing to engage and listen: Information

The NHS Future Forum has completed a new phase of consultation, gaining further feedback from patients, service users and professionals on four themes relating to the proposed reform of UK health services (information, integration, education and the role of the NHS in public health).

This page looks at the report on information, and considers the implications its findings and recommendations may have on black and minority ethnic communities.

The full report is available from the Department of Health website.

Key implications for black and minority ethnic communities

  • The digital revolution is driving a new culture of transparency and public voice, with social media creating the potential for the redistribution of power and influence
    Whilst we welcome greater engagement with the public, these shifts towards online discussion and ‘people power’ must not just take into account society’s most vocal. At our listening events we heard from service users, particularly older people, those in deprived communities or those facing language barriers, who feared that a focus on digital services might ‘leave them behind’. Whilst engagement is to be praised, until access to digital equipment is more equitable, the focus has to be on parallel digital and non-digital services.

  • There must be a shift in focus from collecting (often too much) data to the use of data to inform action
    Ethnic data can clearly highlight localised inequalities, allowing informed measures to improve health services. However, our briefing paper, Ethnic monitoring: Is health equality possible without it?, suggests that without clear guidelines/legal obligations, large regional variations in data collection and quality may emerge, with ethnic monitoring nothing more than a box-ticking exercise in some areas. We support calls for a clearer relationship between the collection of data and its intended use, but also acknowledge continuing problems in the collection of ethnic data, for example, with the reluctance of some health professionals to request ethnic data or of service users to supply it.

    We took part in the Department of Health’s recent consultation (external website) on the collection of patient experience data for black and minority ethnic communities. The consultation not only emphasised the importance of collecting relevant data, but also of the need for black and minority ethnic communities to participate in data collection. Community groups should also be supported to effectively analyse data and make it practical and useful.

  • Patient and voluntary organisations are frequently good sources of information about conditions, treatment option and available services, but signposting to these sources is inconsistent
    Our work with the black and minority ethnic voluntary sector consistently highlights good practice at the regional and local level, however, our ‘regional conversations’ about the NHS reforms have highlighted concerns about a lack of integration between these organisations and local NHS Links. As Department of Health Strategic Partners and a member of the Equality and Diversity Council (EDC), we have sought to improve channels between the NHS and the VCS. In particular, our work with the EDC on the development of the Equality and Diversity System Communications strategy should improve these processes.
  • Information should be provided in accessible formats that meet the needs of young people, elderly people, people with sensory impairments, vulnerable, disadvantaged or black and minority ethnic communities
    We recognise the importance of making health information accessible and have sought to create a collection of translated patient resources on our Better Health website. However, delegates and specialists at our recent interpreting and translation event, In your own words, also emphasised that information without good communication is of little value. Translated documents may give access to the information itself, but many service users will also require face‐to‐face interpretation to ensure that the information is understood. A balance between cost effectiveness and accessibility must be taken into consideration- people have legal rights to accessible information, but these rights, for example, in the case of visually impaired people, are commonly breached.

  • Health professionals do not always display behaviours, skills and attitudes conducive to good communication, information sharing and shared decision‐making
    Our briefing, Effective communication with service users (external website), emphasises possible difficulties in communication between health practitioners and black and minority ethnic communities, whilst our ongoing conversations about ‘cultural competence’ acknowledge possible barriers beyond language. In particular, we welcome calls that the NHS Constitution is amended to include “making every contact count” as a core goal for practitioners.
  • Roll out of access to patient records by 2015 should include the roll out of accessible, hand‐held records to ensure that all those who are not online, including excluded groups such as homeless people and Gypsies and Travellers, do not lose out.
    We welcome this recognition that communities should not ‘miss out’ on the benefits of reforms due a lack of internet access, or factors such as mobility/age.

  • Rigorous information governance practice should be put into place to ensure that identifiable data are used only where absolutely necessary
    Care must be taken to ensure anonymity for areas where black and minority ethnic communities are very small.
  • All organisations, whether from NHS, private or voluntary and community sector, should have full electronic data sharing against set standards.  Commissioners must ensure smaller organisations are not excluded because of these criteria
    The up-and-coming DH Strategic Partners learning event, ‘What good commissioning should look like’ (details will be posted on our events pages shortly), should help commissioners overcome problems such as these.
  • Failing to share information can be a major annoyance for patients, who have to repeat the same information about themselves as they pass through the treatment pathway
    This may be particularly apparent for black and minority ethnic communities if language is an issue, especially since the inconsistent provision of translators may lead to errors in communication about conditions and treatment. We also recognise the use of diabetes as an exemplar in the Year of Care Programme, due to its prevalence amongst black and minority ethnic communities. It is therefore a key example of the importance of accessible information in prevention and treatment of long-term conditions.