Checklist View

Why

Have you discussed and communicated the reasons for working with lay people so that everyone’s expectations are clear?

Yes

We want to work with lay people as we know it is good practice. The need to and motivation for involving lay people has been discussed within the AHSN working group but not discussed with everyone in the local project team. We definitely want to involve lay people in development of the toolkit and include information in the toolkit about how to involve lay people. We will explore with broader stakeholders if there are further areas where it would be useful.

Have you defined the experience and/or skills you are looking for in the lay people you will work with?

Yes

We want to describe from a patient perspective what is like to have heart failure that isn't optimally managed. Particularly as it is likely that the outcomes of the project as QofL rather than money.

Have you been clear about the commitments and expectations with everyone?

Have you agreed what you think that the impact of involving lay people will be and has this been discussed and communicated to everyone?

Yes

Ongoing discussion to see what different stakeholders want.

Co-Define

Have you reviewed research and good practice literature to help you consider what the lay perspective might be for this work?

no

Need to review the Healthtalk HF section. Sian agreed to discuss with HERG to see if a trigger film could be made. As a minimum we will carry out a simple web review of Healthtalk content to look at pulling out outcomes that matter to patient.

Have you reviewed research and good practice literature to help you consider what the lay perspective might be for this work?

Have you discussed how you might approach defining the needs or priorities with individual patients/carers or the public?

No

Have you discussed how you might approach defining the needs or priorities with individual patients/carers or the public?

Once Healthtalk reviewed then set-up discussion group to test out findings - Sian and Hannah - September

Have you established a group, event and/or process for discussion that includes lay people?

No

Have you established a group, event and/or process for discussion that includes lay people?

? given that the project is already defined then this is not needed.

Have you considered whether you need to include the views of seldom heard groups?

No

Have you considered whether you need to include the views of seldom heard groups?

Part of the scoping will include a review of the the epidemiology and defining those that do not engage - Hannah, end of July. The further discussion with Sian to see if any focused seldom heard work should be done.

Co-Design

Have you considered using evidence-based approaches to Co-design?

No

No - the project is largely developed from a standard audit, review, optimise premise. The toolkit will include guidance on involving lay-people - this element could be co-designed.

Have you involved lay people in defining outcomes and how to measure them, including those that could be recorded by patients, public or carers?

Yes

We will do this using Healthtalk and discussions groups.

Have you involved lay people in deciding if decision aids would be useful?

No

Need to see if there are decision aids that might be useful - Hannah to review and discuss further. https://www.google.com/search?q=heart+failure+decision+aids&oq=heart+failure+decision+aids&aqs=chrome..69i57.6614j0j7&sourceid=chrome&ie=UTF-8

Have you involved people in creating any public or patient facing information or communications?

No

As it becomes clear what parts of the toolkits have patient facing materials they will be involved.

Co-Deliver

Education - Are lay people involved in teaching?

No

Education - Are lay people involved in examining?

No

Research - Are lay people involved as researchers, for example, helping to recruit participants?

No

Service Design & Improvement - How are you involving lay people?

No

Not clear that there is a role at the moment

Service Design & Improvement - Are there patient champions to work alongside clinical champions?

Yes

This is a possible role once the toolkit has been developed. To discuss with NENC AHSN the approach they have taken to lay AF champions - Sian has introduced Hannah and a call is planned for 5th July. Hannah/Sian to review potential for this at end July.

Co-Decide

Governance - Are lay people involved in governance structures and processes and or advisory structures and processes?

No

Governance structures to be determined by end of July. Lay representation will be discussed with Sian again then.

Governance - Have you considered the timing and locations of meetings to ensure that they are accessible to all?

Governance - Have you defined expected behaviours for group eg appropriate language – plain English, no acronyms.

Governance - Have you considered having a lay chair or co-chair?

Governance - Have you provided training and support so that lay people can be effectively involved?

Assurance processes - Are lay people involved in staff appointments?

Assurance processes - Are lay people involved in staff appraisal?

Co-Distribute

Are lay people involved in writing-up your work?

Yes

We will have a plain English summary of the project.

Is your report or output written in plain English?

Yes

Not completed yet but we will do a plain English summary

Have you written a lay summary of your work?

Yes

As previous response.

If you are presenting your work, for example at a conference, will you have a lay co-presenter?

No

To be decided as the need arises

If you are running a conference to disseminate your work will lay people be invited?

Yes

To be decided as the need arises but ultimately would want to invite lay people.

Co-Evaluate

Have you involved lay people in deciding what to evaluate?

Yes

We would like one of the overall project KPI (for the national project) to be a quality of life measure and we will include lay people in determining what this should be.

Have you involved lay people in designing the evaluation?

Yes

Depending on what the KPIs are

Have you involved lay people in the delivery of the evaluation?

Yes

Potentially - if appropriate we could involve lay people in gathering qualitative feedback from patients/carers.

Have you involved lay people in the decision making structures and/or processes of the evaluation?

No

Have you involved lay people in distributing the findings of the evaluation?

No

Impact

What is the possible impact on the people?

What is the possible impact on the community?

What is the possible impact on the work processes?

What is the possible impact on the work outcomes or the product produced?

Comments

jaswant.bance@oxfordahsn.org

27th June 2019

Testing that the comments work

Heart Failure

Why