Patient/Public Member Lay Representatives X 2

Patient/Public Member Lay Representatives X 2

Patient/Public Member Lay Representatives x 2

CRN Partnership Group

The National Institute for Health Research (NIHR) Clinical Research Network (CRN): West Midlands is the clinical research delivery arm of the NIHR. We are passionate about the contribution that clinical research can make to patient care. Our aim is to increase the opportunities for patients to take part in clinical research, ensure studies are carried out efficiently and support the Government’s Strategy for embedding clinical research in the NHS.

We wish to appoint two 'lay' representatives to be members of the Partnership Group (PG) to contribute to the development of the CRN: West Midlands. Your remit will be to provide the patients’, carers and general public perspectives, acting as a key link between patient groups and fostering patient/public engagement. You will be a member of the Partnership Group and your role will be to contribute to the overall development, effective management and governance of LCRN activities in the West Midlands. Experience of health services or research as a patient or as a carer or as an advocate or representative of patients and carers is desirable. The ability to understand the broader range of patient/public perspectives beyond one’s own personal experience and to use that to inform the work of the Group/Network is fundamental to this role.

The Partnership Group will meet as a minimum four times per year and the term of office is 3 years. A small honorarium and reimbursement of travel expenses are payable in line with INVOLVE guidance (INVOLVE is a national advisory group that supports greater public involvement in NHS, public health and social care research).

Eligible applicants must be resident within the West Midlands geography. If you wish to apply for one of these roles please send a CV by email to . For further information or an informal discussion, please contact . The closing date for applications is Wednesday 6th August and interviews will be held during week commencing 18th August.

Patient/Public Member Lay Representative – Partnership Group

Background and Role Outline

The National Institute for Health Research (NIHR) is funded through the Department of Health to improve the health and wealth of the nation through research. The NIHR is a large, multi-faceted and nationally distributed organisation. The NIHR Clinical Research Network is the clinical research delivery arm of the NHS in England, tasked with supporting the rapid set-up and effective conduct of studies so that researchers can gather the robust evidence needed to improve treatments for NHS patients.

The NIHR Clinical Research Network is led by a national Coordinating Centre and operates through 15 Clinical Research Networks (CRNs). These networks drive clinical research delivery performance across the locality and champion clinical research in the NHS at every level.

For more information about the NIHR Clinical Research Network please visit

The NIHR Clinical Research Network is committed to engaging with patients and the public throughout its activities as an integral part of changing the clinical research environment. The work of the NIHR Clinical Research Network needs to be relevant to patients, their carers and the public as they are the intended and ultimate beneficiaries of its activities.

It is important for the success of its work that the NIHR Clinical Research Network develops a number of different ways through which patients and the public can meaningfully contribute. One of these ways is to actively involve patients, carers and the public as members of relevant groups which the NIHR Clinical Research Network has set up to oversee its activities.

Involving patients and the public can improve the effectiveness of the work of the NIHR Clinical Research Network through:

•Proactively providing a ‘Lay Voice’ to the business of the Partnership Group by raising and maintaining a focus on issues of importance to patients, carers and the public which might otherwise be overlooked

•Making the work of the NIHR Clinical Research Network more accessible to patients carers and the public

•Helping the NIHR Clinical Research Network to communicate more effectively with patients, carers and the public

•Helping to build greater trust and to promote the credibility of clinical research amongst patients, carersand the public

The Clinical Research Network (CRN) Partnership Group

Each CRN has a Partnership Group which plays a role in the governance of the Network. Information regarding the terms of reference, membership, governance and frequency of meetings of the CRN Partnership Group can be found in Appendix 1.

Role of a CRN Partnership Group Patient / Public Member

Patient/public members of CRN Partnership Groups contribute in the following ways:

•Regularly attend and participate in Partnership Group meetings. This may involve some travel.

•Assist the Partnership Group in understanding the perspectives of patients and the public, including identifying other potential opportunities/roles for patients/the public to be effectively involved

•Act as a key link between the CRN and patient/public groups in order to foster patient/public engagement with local clinical research

•Contribute to the overall implementation and development of the CRN, and to the effective management and robust governance of CRN activities, by contributing to discussions and CRN developments

•Act as a focus of communication between the Partnership Group and Patient, Carer and Public Involvement and Engagement (PCPIE) Groups across the region

•Advise the Partnership Group on further opportunities and strategies for PCIE as CRN implementation develops

•Identify any personal needs for training or support

•Participate in appropriate training and support activities

•Participate in any evaluation of their role, or of the activities of the Partnership Group and the CRN.

Rewards of becoming a CRN Partnership Group Patient / Public Member

•An opportunity to contribute to improving clinical research in the UK, to influence the local clinical research portfolio and to share best practice and research information with others

•Scope to use existing knowledge and experience for the benefit of others

•The chance to develop new skills

•The chance to learn more about the clinical research environment, clinicians, researchers, healthcare professionals, and other partner organisations / key stakeholders

•An opportunity to meet other people with an interest in clinical research.

Person Specification

Patient/public members of CRN Partnerships Groups should ideally have:

  • Experience of health services or research as a patient or as a carer or as an advocate or representative of patients and carers
  • The ability to work and communicate effectively and appropriately as part of a team
  • The ability to use relevant personal experience and knowledge of health services and research to inform the work of the CRN
  • The ability to understand the broader range of patient/public perspectives beyond their own personal experience and to use that to inform the work of the Group/Network
  • The ability to listen to others, summarise issues and express views objectively with a constructive purpose
  • An understanding of the relevance of patient, carer and public involvement in the work of the NIHR Clinical Research Network
  • An understanding of the importance of and role of clinical research
  • An understanding of and commitment to the broad objectives of the NIHR Clinical Research Network
  • A willingness to become familiar with research and medical language

It is also desirable for patient/public members of the Partnership Group to have:

  • Experience of participating in formal meetings where there is a routine expectation for group members to prepare, by reading meeting papers that may be complex
  • A basic understanding of or interest in clinical research processes
  • Self confidence in a mixed group of professionals. Able to respond to appropriate challenging tasks and understand key information from provided meeting papers.

Patient/public members of CRN Partnership Groups are appointed on the basis of their ability to provide knowledge and experience that will be valuable in moving forward the work of the CRN and the NIHR Clinical Research Network. Appointment to the Partnership Group is made on an individual basis and not as representatives of a particular group or organisation.

Training and support

You will be offered the opportunity to attend an induction meeting before you attend your first Partnership Group meeting. This will include the opportunity to discuss and identify any needs for training and ongoing support. You will be offered the support of a mentor/buddy from the group.

Expenses

Reasonable expenses that arise from involvement in Partnership Group meetings will be reimbursed. More detailed information about the process of reclaiming expenses will be provided by the CRN.

Attendance fee

The CRN offers a small honorarium in respect of the time spent in reading papers and preparing for the meetings and are payable in line with INVOLVE guidance (INVOLVE is a national advisory group that supports greater public involvement in NHS, public health and social care research). This is offered to people who are not working in the public sector and whose time would otherwise not be paid for.

Income Tax is payable on this fee. Individual patient / public members are responsible for informing HM Revenue and Customs of this income. Please be aware that people in receipt of state benefits and allowances are required to declare changes in their circumstances to their local Jobcentre Plus office. If you are concerned about the possible impact of accepting payment on your benefits and allowances please contact your local Jobcentre Plus office and/or your local benefits advice agency.

Term of Office

Partnership Group patient / public members are recruited for a period of 3 years.

Declaration of Interests

All Partnership Group members are required to declare if they have any interests that might be in conflict with the work of the Partnership Group/Network in which they are a member. A conflict of interest does not stop you from being a member of the Partnership Group. However it does mean that you cannot take part in any discussions or decisions made on a project/issue where you have a conflict of interests. If you need guidance on what may represent a conflict of interest please contact the Chair of your Partnership Group.

Confidentiality

Partnership Group members must not communicate any confidential information that they learn as a result of being a member of the Partnership Group. As a matter of routine all Partnership Group papers should be regarded as confidential unless marked otherwise. There may well be occasions on which Partnership Group members are specifically asked to share information within their own communities or seek the opinions and views of others. If you are unclear about whether or not information that you have access to is confidential or not, please seek clarification from the Chair of your Partnership Group.

Appendix One

Local CRNPartnershipGroup(LCRN)

(Source:NIHRClinicalResearchNetwork2014-15PerformanceOperatingFramework)

PartnershipGroup

3.20 Organisationsinreceipt ofLCRNfunding tosupport NIHR CRN portfolio researchwill beknownas theLCRN Partners.

3.21. It isexpectedthat LCRNPartnerswill beoftwo types,bothofequal importance:

a) ProvidersofNHSserviceswithsubstantial levelsofresearchactivity,such that theorganisationwill receiveaplannedannual allocationofLCRN funding(“CategoryA Partners”);

b) ProvidersofNHSserviceswith relatively lowlevelsofresearchactivity, typicallyad-hocor intermittent innature,involvinglownumbersofpatients and/or lownumbersof researchstudies, suchthat theorganisationwill not requireaplannedannualallocationofLCRNfundingandinsteadwill be reimbursedasrequiredforcosts incurred; thiscategory islikelytoinclude most primarycareserviceproviders, andother non-NHS organisations providingNHS services(“CategoryB Partners”).

3.22. TheHost organisationwill constituteaformalforum for LCRN Partners, includingtheHost organisationasarecipientof funding tosupportclinical research,andmayalsoinclude thosecommissioningorganisationsthathave contractswithsuchprovidersofNHS services. Thisforum shall beknownas theLCRN PartnershipGroup.ThePartnershipGroupshouldbeformedof delegateswithauthorisation torepresent andmakedecisionsonbehalfof theirorganisation.ThePartnershipGroupwill includelayrepresentation.

3.23. TheHost organisationwill agreeanappropriateprocessthatenablesless research- activeproviders,primarycareandindependentcontractorstotheNHS, tobe representedontheLCRN PartnershipGroup. Optionsfor thismight include, butarenotlimitedto, representativesfromClinical Commissioning Groups, Local AreaTeamsandDirectorsofPublicHealth,aswell as research-active independentcontractors.

3.24. ThePartnershipGroupwill be requiredtoengagewithprimarycare, mental healthandcommunitysectorstoensuredeliveryofstudies.

3.25. WhereanLCRN hasalargenumber ofPartnershipGroupmembers,an arrangementfor representationmaybeadopted,provided thePartner organisationswithin thatarrangement delegateresponsibility inwriting from theirChiefExecutiveOfficer (or equivalent)totheirrepresentative organisationonthePartnershipGroup.

3.26. ThePartnershipGroupmust bechairedbyaChiefExecutiveOfficerfrom an LCRN organisation. Initially,inorder toensuretheeffectiveestablishment of thePartnershipGroup, theGroupmaybechairedbytheHost Organisation ChiefExecutiveOfficer; in maturity, theGroupordinarilyshouldbechairedby aChiefExecutiveOfficerfrom anLCRN Partnerorganisationother thanthe Hostorganisation.

3.27. TheHost organisationshouldbeconsideredanLCRN Partner initscapacity asarecipientofNIHR CRNfunding tosupport clinical research,acapacity separatetotheLCRN hosting role. TheHost organisation thereforeshouldbe representedonthePartnershipGroupasanLCRN Partner, inorder to represent theinterestsof theHost organisationoutwith theLCRN hosting function.

3.28. Expectedfrequencyofmeetings isfour timeseachyearasaminimum.

3.29. TheTermsofReferenceofthePartnershipGroupwill include:

  • ReviewingandagreeingLCRN businessplansand reports,including annualfinancial andbusinessplans, development plansandthe Annual Report’for approval bytheHostorganisationBoard;
  • Informedbyfinancial andactivitydata, activeoversightand constructive mutual challengeofLCRN activityandperformance, includingdeliveryperformancecomparedtofundingallocated,inorder toraiseambitionandimproveperformanceineachPartner organisation(orgroupoforganisations, for lessresearch-active Partners);
  • Monitoringofanycompliances requiredofPartnerorganisations.

3.30. AsaconditiontoreceivingLCRNfunding, andassetoutinacontract or ServiceLevel Agreementbetween theHostorganisationandeachLCRN Partner organisation, LCRN Partnerswill be requiredtosupport theLCRN and theHost organisationingoodgovernanceby:

  • Identifyinganindividualwhoisavotingexecutiveboardorgoverning bodymember torepresent theorganisationintheLCRN Partnership group. Representationbyanon-Boardlevel Director ofthe organisationshouldonlybepermissiblewithformal,writtendelegated authorityfrom theChief Executive Officer or equivalentunderthe Partner organisation’sschemeofdelegatedauthority.Representatives mayonlybedeputisedforatLCRN PartnershipGroupmeetingsby another colleaguewith thesamelevel ofauthorityas the representative.
  • Ensuring thatLCRN activityandfundinginPartnerorganisations addressesgoodgovernance;
  • Ensuring thatanyrelevant governanceor compliance matters,suchas researchgovernanceorinformationgovernance, areproperlyattended toanddetailssharedwith theLCRN or theHostorganisationas appropriate. Thiswill includesupportingtheHost organisation’sInternal audit with reviewsandinvestigations;
  • Receivingareportfrom theLCRN eachyearat thePartner organisation’sBoard, toincludedetailsof theirlocal involvementin the LCRN viaasupplementaryreport from their LCRN PartnershipGroup member;
  • ReviewingandscrutinisingLCRN businessandfundingplans,and performanceagainst these,inorder tomaintainassurancearound LCRN andHost organisationactivities.
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