Safe Care for Adults with Complex Health Needs PSP Terms of Reference

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Published: 15 October 2020

Version: 4

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Introduction

The James Lind Alliance (JLA) is a non-profit making initiative that was established in 2004 with the aim of enabling groups of patients, carers1 and healthcare staff to work together in a Priority Setting Partnership (PSP) to agree priorities for health research in a specific area.

Traditionally, true collaboration between patients, carers, the public and healthcare staff to set the agenda for research has been unusual, but it is vital if we are to optimise the selection of priorities for future research. This PSP will agree the top 10 priorities for research into safe care for adults with complex health needs. It is led by a Steering Group made up of key stakeholders with lived experience or expertise in care for adults with complex health needs including patients, carers and the public, healthcare staff and individuals from organisations representing those groups.

This PSP is hosted and funded by the National Institute for Health and Care Research Imperial Patient Safety Translational Research Centre (PSTRC). The PSTRC has been funded by the NIHR since 2007, and was recently awarded a further £7m for five years from August 2017-July 2022. The aim of the PSTRC is to identify improvements in patient care, experience and outcomes which can be put into every day healthcare practice to reduce the risks to patient safety.

The Priority Setting Partnership

The aim is to agree the top 10 research priorities for safe care for adults with complex health needs, so that research funders can prioritise these in future decisions about research funding.

The JLA has established a method which has already been applied successfully in a number of other areas of health care. A list of completed PSPs can be found on the JLA website: http://www.jla.nihr.ac.uk/

In summary:

1. The PSP is led by a Steering Group, chaired by a JLA Advisor and supported by PSP Leads, a PSP Information Specialist and a PSP Co-ordinator.
2. At the outset, the Steering Group will define the focus for the PSP and set out its parameters, agreeing what is included and what is not.
3. The Steering Group will then:

  • Agree and pilot a survey to be completed by patients, carers, the public and healthcare staff, asking them to identify what for them are the most important research questions
  • Identify and work with a wide range of partner organisations to circulate the survey widely to patients, carers, the public and healthcare staff, including those from seldom heard groups
  • Oversee the Information Specialist, who will review the responses to the survey, check if the questions have already been answered by research and remove any that have been or merge any duplicate questions
  • Agree a long list (around 80) of research questions
  • Agree and pilot a survey to ask patients, relatives, carers, the public and healthcare staff which are the most important questions from the long list
  • Reduce these to a shortlist (around 25) which will be considered by a one day priority setting workshop of patients, carers, the public and healthcare staff who will agree the top 10 research priorities
  • Promote these research questions widely including to researchers and research funders.

The Steering Group

The Steering Group is responsible for defining the remit of the PSP, and overseeing the work programme in line with the JLA process. Members will draw on their networks to encourage participation in the surveys. The Steering Group is also responsible for helping raise awareness of the final top 10 research questions, including among research funders.

Membership of the Steering Group includes individuals and representatives of organisations who can reach and advocate for patients, carers, the public and healthcare staff. Steering Group members (who are not academic researchers and have no conflicts of interests), who have direct relevant experience of adults with complex needs as patients, carers or healthcare staff, are also invited to fill out the surveys and participate in the workshop.

Role of Steering Group meetings

Steering Group members are asked to contribute, as a minimum, their expertise and their time whilst maintaining the following principles:

  • an interest in the initiative and outcomes being pursued in the project
  • a broad understanding of project management issues and the JLA approach being followed
  • commitment to working with other members respectfully and constructively
  • advocacy for the project’s outcomes.

Specifically, Steering Group members will:

  • attend monthly telephone conference calls between one and two hours. To be effective in its decision making, each meeting should be represented with at least two healthcare professional members and two patient/carer/public representatives
  • attend face to face meetings, or if unable to attend, submit comments ahead of the meeting.
  • respond promptly with feedback on project materials by responding to emails
  • share networks and contacts to involve in the PSP
  • publicise the initiative to potential partners and networks to encourage them to be involved in the PSP. This includes advising on who should be involved in the PSP (to ensure a wide and representative group of patients, carers, the public and healthcare staff) and emailing contacts to invite them to participate
  • have oversight of the collection of research questions from patients, carers, the public and healthcare staff and the literature review being completed
  • oversee and lend expertise to the data management process, including agreeing the scope and process for data-checking
  • have oversight of the interim priority setting stage
  • verify the shortlisted research questions to be taken to the final priority setting workshop
  • participate in the final priority setting exercise (if their role qualifies them to represent the views of patients, carers, the public or healthcare staff). This is the one-day workshop which brings patients, carers, the public and healthcare staff together to debate, rank and agree a final top 10
  • work with the National Institute for Health and Care Research Evaluation, Trials and Studies Coordinating Centre (NETSCC) and other research funders to develop the priorities research funding calls.

It is agreed that for this safe care for adults with complex health needs PSP, at least seven members of the Steering Group, including at least two patient/carer/public representatives, will need to ratify all decisions.

Declaring interests

Steering Group members are asked to declare any interests relevant to the safe care for adults with complex health needs PSP. The JLA provides an example form, and the interests of each member will be listed and shared among the group. This is to encourage a culture of openness and transparency. Relevant interests may be professional, personal or related to an interest in or involvement in clinical research, for example.

Steering Group members

Patient, public and carer representatives:

  • Sandra Jayacodi (Patient and Public Representative)
  • Katherine Murphy (Independent Care Consultant)
  • John Norton (Patient and Public Representative)
  • John Laville (Carer Representative)

Healthcare professional and provider representatives:

  • Mark Forshaw (British Psychological Society)
  • Rose Gallagher (Royal College of Nursing)
  • Ann Jacklin (Independent Consultant Pharmacist)
  • Rose Jarvis (Academy of Medical Royal Colleges)
  • Susannah Long (British Geriatrics Society)
  • Joyce Pinfield (National Care Association)
  • Joan Russell (NHS Improvement)
  • Jo Watson (Allied Health Professions Federation)

PSP coordination

The PSP is being run by the National Institute for Health and Care Research (NIHR) Imperial Patient Safety Translational Research Centre (PSTRC). It will be chaired by Catherine White, JLA Adviser. Sheila Adam, Dr Steph Archer and Professor Bryony Dean Franklin from the PSTRC will lead this PSP. Dr Kristina Staley is the Information Specialist for this PSP and will carry out the analysis, overseen by the Steering Group. Anna Lawrence-Jones is responsible for the coordination and administration of the PSP. This includes making arrangements for all meetings and workshops, and ensuring that:

  • Requests for agenda items are discussed with the group
  • Papers are available at least a week before meetings
  • Meeting notes are circulated within two weeks.

Timescales

The first meeting of the safe care for adults with complex health needs PSP Steering Group took place on 5th April 2017. We propose that the final meeting prioritisation takes place in by the end of 2018 (date tbc).

Key contacts

PSP Leads: Dr Sheila Adam (Patient and Public Involvement & Engagement Adviser at NIHR Imperial PSTRC), Dr Steph Archer and Professor Bryony Dean-Franklin (Academic Leads for Patient and Public Involvement & Engagement at NIHR Imperial PSTRC)
PSP Co-ordinator: Anna Lawrence-Jones (Patient and Public Involvement & Engagement Manager at NIHR Imperial PSTRC) a.lawrence-jones@imperial.ac.uk
PSP Information Specialist: Kristina Staley (Director at TwoCan Associates)
PSP Chair: Catherine White (JLA adviser)