Analysisof Third Sector IG Survey Report

Contents

1.Introduction

2.Profile of Respondents

3.Current Information Sharing

4.Information Gaps

5.Information Sharing Plans

6.Information Governance

7.Issues

8.Conclusions

Appendix A – Survey Template

Appendix B – Survey Participants

1.Introduction

This report provides an analysis of responses from a survey carried out by the CAF core team with third sector agencies which are participating in the CAF demonstrator programme. A copy of the questionnaire used for the survey is included in Appendix A.

This paper is being submitted to the Third Sector Information Governance Steering Group to:

  • Provide an analysis of the current situation, needs and issues, regarding information sharing with health and social care in the CAF demonstrator programme
  • Provide a basis for discussing issues and requirements for further work in this area to enable the CAF demonstrators to implement information sharing with third sector agencies effectively.

Thanks to the third sector agencies and their demonstrator partners for participating in the survey. The list of those agencies is given in Appendix B.

2.Profile of Respondents

There were 10 survey responses received from third sector agencies in 7 of the 12 CAF demonstrator sites. Most of the agencies (8) were local, the other 2 were national. A profile of the main functions/roles of the agencies is given on the table below.

Role / Description / No. agencies
Information, advice and support / Provide information and advice to service users and/or carers, support networks, advocacy / 2
Support broker/ placement service / Provide information and advice, plus arrange support with and for an individual, including placements into nursing homes (continuing healthcare) / 4
Support services provider / Provide support for individuals and their carers, e.g. domiciliary, clubs, day care, etc. / 4

Note that:

1)Some of the agencies have several roles, but only the primary one is listed

2)All agencies have an information and advice role

3)Some agencies also have roles in campaigning, lobbying, influencing policy, education, etc., but as these do not relate to working with individuals and their records they have been omitted from the analysis.

A breakdown of the IT systems in place in the agencies is given below

Most of the in-house systems are Access databases.

One of the respondents explained that: ‘We as an organisation do not hold service user information electronically because of a) the low volume and b) the relative cost of computer technology.’

3.Current Information Sharing

Current information sharing is largely oral or on paper, with two agencies also using email.

A service user journey used in analysing information sharing is illustrated on the diagram below:

Information sharing at each stage is analysed on the table below. Note:

  1. The information is drawn from 9 of the 10 agencies. One agency did not complete this part of the template.
  2. The table provides a compilation of the information flows across all the agencies, and each individual flow is not relevant to all the agencies.

Stage / Information from social care / Information to social care / Agency / Comments
Receive enquiry / Referral / Referral or outcome of referral from social care / All / Information varies, but can include personal details, background, statement of requirements, risks, needs, etc.
Assessment / Single assessment, Supported Self Assessment, RAS score,
Care plan,
Risk assessment / Assessment, Carers assessment,
Risks,
Service details (where, when, etc.) / Service providers, Placement agency
Plan response / Approved support plan / Support plan, letter of agreement, financial details / Support brokers
Implement plan / Brokerage budget
Direct payment, details of services provided by Council / Follow up on actions / Support brokers,
Service providers
Monitor & support / Any issues relating to service provided or changes in individual’s needs or issues / Any issues relating to service provided or changes in individual’s needs. Updates on effect of interventions or outcome of contact with individual. / Service providers / Any agency may flag up issues to social care at any point.
Review situation / Review documents (e.g. revised RAS, SSAQ) / Report or input to review.
Advocacy. / All

In summary, the types of social care information made available or communicated to third sector agencies, include:

  • Referral, including, for example, personal demographics, background, reason for referral, and other relevant information
  • Assessment
  • Care/support plan and updates to plan
  • Changes in individual’s circumstances, issues
  • Individual budget/direct payment
  • Review

The types of third sector information made available or communicated to social care varies according to role but across the third sector agencies, they include:

  • Referral
  • Assessment
  • Support plan and updates to plan
  • Changes in individual circumstances, issues
  • Review

6 third sector agencies did not identify any information sharing with the NHS. 4 of the agencies have referrals from the NHS, of these, 1 agency communicates updates/issues to the NHS and 2 of the agencies share the same kind of information with the NHS as with social care.

Examples of type of information sharing by role are given below:

Support broker:
Receive a referral from social care. Support broker works with an individual to develop a support plan, which they submit to social care for approval. Support broker may also be involved in social care review.
Support provider:
Receive a referral from social care, and may also get a copy of the assessment and care/support plan. Undertake a provider assessment and develop and implement a support plan with the individual, which may be communicated to social care. During service delivery, communicate with social care where there are changes in the individual circumstances or problems arise. Also feed into social care review.
Information, advice and support:
Receive a referral from social care, work with individual to identify needs and develop a support plan. Refer back to social care where appropriate. Support the individual as needed on an on-going basis. May act as an advocate at meetings with statutory sector, e.g. reviews.

4.Information Gaps

Most agencies identified a need to access more detailed information to help them in doing their job. Note that 1 agency did not complete this part of the template. The type of information will vary with the role of the agency, but across the agencies, the following information requirements were identified:

Stage / Information / Why Needed / Which agencies
Receive enquiry / View:
More detail, e.g. risks and alerts, contact details, background information, services involved, conditions, nature of enquiry and assistance required / To avoid duplication.
To better respond to needs/ provide advice.
To assess whether the agency has suitable services available.
To identify any risks if visiting at home. / All
Assessment / View:
Overview assessment, SSAQ,
NHS assessments, Risk assessments,
Including, e.g. biographics, mobility, medical and MH issues, mental capacity / As above, plus to assist in producing support plan. / Support provider
Placement agency
Plan response / As above / As above / Support provider
Implement plan / Update:
Support plan / Support provider
Monitor & support / View:
Updated medication
Changes in health & social care needs
Advanced directives
Issues or concerns, e.g. personal budget expenditure, care arrangements
Update:
Support plan
Changes in individual’s situation / To address changing needs.
To deal with emergencies.
To respect individual wishes
To make sure individual has appropriate information and support / Support provider
Information, advice and support
Review / View:
Details of review, copy of revised SSAQ, overview assesment, copy of revised RAS score / Confirm whether support needs met and whether to continue/close/change.
To assist in revising support plan and arranging support

5.Information Sharing Plans

The table below sets out plans for information sharing with NHS and social care in the context of the CAF Demonstrator Programme. Note that one agency plans to use more than one way to share information.

Type of Information Sharing / Number of agencies
No plans/To be confirmed / 4
Paper / 1
Access to social care system (1 via web portal) / 2
Web portal for referrals/supported self assessments to social care, but not access to social care system / 2
Access to health and social care records via web portal / 2

6.Information Governance

The table below provides an analysis of the responses:

IG / Number with / Comments
Information Sharing Protocol / 3 / Plus 3 under development
IG role in organisation / 5
Electronic IG controls / 5 / Most said that they had all the electronic IG controls, but it is unlikely that they have these on their current systems. They may be referring to future web portal arrangements?
IG in workers contracts / 9 /
  • Generally Data Protection and Confidentiality.
  • Volunteers work for one agency but do not have contracts.

Data Quality policy / 7
IG training for staff / 7 / Variable. Some provide only basic data confidentiality training. ‘Just for the Record’ training mentioned by 2.
IG support from NHS/Social Care / 1 / Only 1 agency reported support from a statutory agency

7.Issues

The issues raised are analysed on the table below.

Issue / Number of Agencies
None / 2
Current IT capability/capacity / 1
Lack of formal information sharing agreements / 4
NHS and social care views on confidentiality / 2
Time wasting as information not available when needed / 2
Lack of access to information when needed / 1

The main suggestions for addressing these issues were:

  • Information sharing protocols to provide formal structure for information sharing.
  • A central system, with appropriate IG controls to enable sharing of information as it is recorded, between NHS, social care and third sector.

8.Conclusions

This is a relatively small sample of agencies, so that conclusions can only be drawn for the CAF demonstrators and not wider third sector agencies. The conclusions are:

  1. The third sector agencies which responded mainly have no or in-house IT systems. This is likely to mean using social care or NHS systems with appropriate access controls, rather than linking in existing third sector systems.
  1. The third sector agencies already have access to social care and NHS information, which is of a personal and sensitive nature, e.g. assessments, care plans, individual budgets, with the consent of the individual. This information is required to enable their role in supporting an individual. Most of the agencies have a role throughout the individual service user’s journey and so would need access to information on an on-going basis.
  1. The level of information sharing that is planned in the CAF Demonstrator Programme varies across partnerships, ranging from no electronic sharing, through those which are providing third sector agencies with web portals to use to refer to social care/NHS, to those that are providing access to local social care and NHS records.

The main issues identified in the survey are

  1. Most agencies felt that more detailed information would help them to do their job better, by avoiding duplication and enabling them to better respond to the needs of the individual. There is a need to define more precisely what information each agency requires and this is likely to vary by role, e.g. in making a placement for somebody to a nursing home detailed clinical assessments are needed, but would not be if arranging day care for somebody.
  1. Information governance arrangements are less robust than in the NHS or Social Services, as might be expected with small organisations. They would generally not be sufficient to meet the Information Governance Statement of Compliance required to access NHS Care Records Services, nor are they in line with the IG Toolkit for Social Care. Despite this few agencies receive any support from statutory services. There is a need to:
  • Clarify what the IG requirements are for third sector agencies. If the agencies are using social care systems, then the technical controls will be provided by the Local Authorities (see issue 7 below), with the main requirements on third sector agencies being about the handling of sensitive personal data. This means having appropriate governance, roles, policies, training and contractual requirements in place in each third sector agency.
  • Identify ways in which third sector agencies can be supported in meeting the IG requirements. It may be that DH/CFH, local authorities and the NHS can support them in meeting these requirements, e.g. through a third sector IG toolkit, use of existing training tools, sample contracts, policies, etc.
  1. The lack of formal structures for information sharing with the third sector and lack of clarity by the NHS and social care about what can be shared and how it can be shared. Information sharing protocols were recommended so that people are clear about what can be shared and how confidentiality will be maintained. Some participants said that they had protocols and sharing example ISPs may be useful to other sites.
  1. The lack of electronic information sharing was identified as inefficient and time-wasting.It was recommended that IT systems were needed to enable sharing of health and social care records with appropriate IG controls. The CAF Demonstrator Programme has already specified access controls for information sharing between health and social care, which would appear to be appropriate to sharing with the third sector too, provided appropriate roles were defined. These include:
  • registration. Each user of the system needs to be verified to be who they say they are (producing forms of identification) and registered as a user..
  • authentication. For portal access, user name, password and another on screen authentication (e.g. letters from a secret word or question) is being proposed. For direct access to a Spine connected application, users need to have smartcards.
  • role based access controls, which restrict access to functions/information on an IT system that are relevant to an individual’s role and hence what information they need to know.
  • legitimate relationships, which restrict access only to records of individuals with whom there is a direct care or support relationship.
  • consent, which means that it is only possible to access someone’s record with their consent and that the consent is recorded on the IT system.

The CAF demonstrators can provide an opportunity for testing these arrangements out.

Appendix A – Survey Template

Common Assessment Framework Demonstrator Programme

Voluntary Sector Information Sharing Template

This template is being used to develop a picture of the information sharing needs and issues of voluntary sector organisations[1] who are partners in the CAF demonstrator programme. If you are a partner who is an independent sector care organisation, please include participate as well.

Please complete the template for your organisation. You may want to work with your NHS or Local Authority partner to respond to some questions. If you need any help completing the template, please email or call her on 07768 877306.

General Information

Name of organisation:

Name of person completing the form:

Email address of person completing the form:

What the organisation does (how it supports people):

How the organisation is structured, i.e. where decisions are taken about information sharing with the NHS and social care (national, regional or local):

Do you have your own computer system with electronic records for the people you support?

If so, what is the name of the supplier and the system?

Information Requirements

The diagram below provides an overview of the assessment and care and support planning process.

Some third sector agencies support people across all the stages in the process above but some support them only in some specific stages. Please could you indicate in the tables below which stages you are involved in, what the role of your staff is, what information you receive from the NHS/social care and what information you provide to the NHS/social care. This could be information sent by fax or on paper or by phone, not just electronic information. There are separate tables for the NHS and social care as you may communicate with both.

For example, you may be involved in the plan response stage, your role being to act as a broker for individuals and the information you get from the NHS/social care being social care assessments needs and any care and support plans already in place.

Social Care Information Flows

Stage / Role (i.e. of the worker) / Information received from social care / Information that you provide to social care / Method (e.g. paper)
Receive enquiry
Assessment
Plan response
Implement plan
Monitor and support plan
Review situation

NHS Information Flows

Stage / Role (i.e. of the worker) / Information received from NHS / Information that you provide to NHS / Method (e.g. paper)
Receive enquiry
Assessment
Plan response
Implement plan
Monitor and support plan
Review situation

There may be information that you would like to have available that you do not currently, please could you identify on the table below what information you would like to have access to that you do not currently and whether you only need to be able to view it or whether you would like to input/update the information too.

Stage / Information required / View or Update / Why you need it
Receive enquiry / ViewUpdate
Assessment / ViewUpdate
Plan response / ViewUpdate
Implement plan / ViewUpdate
Monitor and support / ViewUpdate
Review situation / ViewUpdate

Information Governance

How are you planning to share information with health and social care partners in your CAF demonstrator project? (e.g. on paper, access to social care system, via citizen portal, etc.)

Do you have an information sharing protocol covering information sharing across NHS, social care and third sector?