Public and Patient Involvement in Research for the Leicester Cardiovascular Biomedical Research Unit

Transcription

1 Public and Patient Involvement in Research for the Leicester Cardiovascular Biomedical Research Unit Vision To deliver research that changes healthcare in a way that ensures maximum impact and meaningfulness through engagement and involvement of patients and the public.

2 Definitions Involvement INVOLVE defines public involvement in research as research being carried out with or by members of the public rather than to, about or for them. This includes, for example, working with research funders to prioritise research, offering advice as members of a project steering group, commenting on and developing research materials, undertaking interviews with research participants. Engagement INVOLVE define engagement as where information and knowledge about research is provided and disseminated. Examples of engagement are: 1. science festivals open to the public with debates and discussions on research 2. open day at a research centre where members of the public are invited to find out about research 3. raising awareness of research through media such as television programmes, newspapers and social media 4. dissemination to research participants, colleagues or members of the public on the findings of a study. The Public When using the term public we include patients, potential patients, carers and people who use health and social care services. Whilst all of us are actual, former or indeed potential users of health and social care services, there is an important distinction to be made between the perspectives of the public and the perspectives of people who have a professional role in health and social care services.

3 The Leicester Cardiovascular Biomedical Research Unit The National Institute for Health Research (NIHR) Leicester Cardiovascular Biomedical Research Unit (LCBRU) aims to improve the diagnosis, prognosis and treatment of cardiovascular disease. It is one of 20 units funded by the NIHR, a strategic research funding body within the NHS. The Unit was successfully renewed for the period April 2012-March 2017, a continuation of funding initially awarded in April LCBRU is based at Glenfield Hospital, where over the past four years it has developed an outstanding infrastructure for research, including a translational medicine facility (TMF), a clinical research facility (CRF), a 3T-MRI research scanner, an informatics platform - the Biomedical Research Informatics Centre for Cardiovascular Science (BRICCS) and the Leicester Cardiovascular Bioresource (LCB).The Unit has 15 Principle Investigators and directly funds over 30 specialist staff, fellows and students and has a large pool of research nurses and administrative assistants.

4 Linking to the BRU Strategy Involvement of patients and the public will play an important role in the BRU ensuring that research is acceptable and accessible to participants and therefore recruits successfully, and that the research supported by the BRU genuinely addresses patient and public need in translation to healthcare. In this, involvement will safeguard the public interest and the BRU will develop a reputation for excellence. The goals of the NIHR Leicester Cardiovascular BRU are to: 1) Deliver a programme of innovative research outlined in the NIHR BRU application measured deliverables will include high impact publications, increased grant income, increased patient participation in research, increased number of patents and increased outputs with demonstrable patient benefit. Involvement plays a key role in ensuring that our research translates into healthcare that meets public and patient need and is designed and delivered in a way that is acceptable and accessible to patients, maximising recruitment to studies. Increasingly it is also a requirement of funders and publishers. 2) Establish ourselves as the regional hub for translational cardiovascular research measured deliverables will include evidence of increased collaborations with other local and regional NIHR structures and with other University/NHS partners (Loughborough and Nottingham). There is a strong drive from the PPI Group to continue to make best use of research through collaboration with healthcare and academic partners. The involvement of patients and the public is vital in ensuring our research has maximum impact in translation to healthcare by meeting patient and public need and will be a fundamental and integrated part of the development of the BRU into a regional hub for cardiovascular research. 3) Consolidate our reputation as a natural partner with industry for collaborative experimental studies measured deliverables will include increased number of industry-sponsored studies and income. The challenges of getting commercial partners to engage with PPI are well recognised. The BRU will demonstrate the tangible benefits of involving patients and the public to commercial partners to encourage them to benefit from our expertise and experience of working with patients and the public to achieve maximum impact in translation to healthcare by meeting patient and public need. 4) Further strengthen our national and international academic partnerships measured deliverables will include increased number of collaborative programme grants, engagement with national NIHR infrastructures and participation in relevant experimental therapeutic clusters. The PPI Group is keen for research data and samples to be used in a way that ensures maximum benefit for participant effort through partnership working with healthcare and academic partners. Our patient lead basic science project into Spontaneous Coronary Artery Dissection is a key example of an international collaboration developed in response to patient demand which arose out of transatlantic and international conversation between SCAD patients on social media.

5 5) Continue to enrich and broaden our research portfolio by engagement with new disciplines measured deliverables include collaborative research and cross-thematic studentships with engineering and physical sciences. Involving patients and the public to achieve maximum impact in translation to healthcare by meeting patient and public need with research that is acceptable and accessible to participants will help create a research culture that is attractive to potential research partners in the statutory and commercial sector across a range of disciplines. This is particularly helped by a PPI Group with several members from engineering backgrounds and an enthusiasm and passion for engineering and the physical sciences. 6) Ensure sustainability and progress towards Biomedical Research Centre status measured deliverables include success in training and nurturing the next cadre of clinician scientists and developing critical mass towards BRC status. Public and patient involvement will play a vital role in supporting the BRU towards BRC status, supporting BRU partnership working between Lifestyle, Respiratory and Cardiovascular, and creating opportunities to collaborate through involvement, such as the joint BRU Open Day. The role of involvement in supporting the unit to deliver maximum impact in translation to healthcare by meeting patient and public need is fundamental to sustainability.

6 Development of Public and Patient Involvement in Research Strategy Public and Patient Involvement in the Biomedical Research Unit There are many reason for involving the public and patients in the work of the Biomedical Research Unit and several ways in which people can be involved. Reasons for involving the public and patients include: Research is geared towards what matters for patients and the public, so healthcare subsequently meets their needs better Gaining constructive advice on study materials and design Improving recruitment rates Public awareness of the Unit is an opportunity to communicate preventative health messages Research is often funded by public money so researchers should be accountable to patients and the public Involvement activities are very varied and differ from one piece of research to the next. People can be involved in the BRU at several levels, which are explored in more detail in the 5 year action plan. Raising awareness of research (engagement) generally underpins patient and public involvement in the Unit. This is facilitated by attendance at events, newsletters, social media, news stories and the website. An occasional level of involvement appeals to some patients and members of the public which is accessible through our Open Days, surveys, occasional diagnosis or study specific meetings, and public lectures or talks to special interest groups. Process of Developing this Strategy This strategy is based on the Strategy, revised in 2014 in partnership with INVOLVE and the BRU Patient and Public Involvement Group. The strategy is informed by substantial work developing genuine public and patient involvement started in 2010 with the inauguration of the Public and Patient Involvement Group. Stakeholders A range of people have a stakeholder interest in the work of Unit related to their work, third sector involvement, or through personal experiences. This is a wider group of people who can influence the BRU strategy and support awareness raising activity. Stakeholders include partners in health, sport, special interest groups, and the third sector. At the heart of patient and public involvement in the Unit are the Patient and Public Group. This Group meets monthly to steer patient and public involvement in the Unit, contributes to the strategic direction of the Unit and review specific research projects. The Unit is currently supporting a patient led basic science research project around spontaneous coronary artery dissection (SCAD), a rare and serious event effecting mostly young, healthy women. Development of Involvement and Engagement The BRU has been actively implementing and promoting patient and public involvement and engagement since 2010 when the PPI Officer came into post.

7 During 2010 and 2011 the PPI Group was established, supported by the University Hospitals of Leicester NHS Trust Patient Advisors. Terms of Reference were agreed and the group was resourced appropriately to fund expenses, parking and training costs. By October 2010 a wider group of patients and the public were welcomed, many as representative of stakeholder organisations including HealthWatch (then LINKS), the British Heart Foundation support group, Patient Advisors and local charity and support group Take Heart Leicester. The group decided they wanted to be volunteers and that they would like the meetings to be facilitated (rather than chaired) and administrated by the PPI Officer. Immediately researchers began presenting their projects to the group and to date they have heard about 57 research projects. There are 12 members of the group and each meeting is usually attended by 10 members. Existing and new members are recruited by engagement work including giving talks and demonstrations, attending events with displays, newsletters, and open days, and also from research participants interested in getting involved, identified principally by colleagues in the Research Nursing Team. The current membership comprises a mix of men and women, many of whom are retired, with a wide range of life experiences. Profiles Anthony Locke I suppose it must have grown from my interest in research generally. I became alerted to the growing cardiovascular team when I was undergoing investigations. I volunteered for research projects in respiratory, exercise and cardiovascular experiments. These things soon get you involved in other groups. The process still goes on - now being involved in Prof Gavin Murphy's research projects and those in other universities and hospitals where I'm a patient. I've taken part in projects in other hospitals and universities too, so I've been able to use the experience gained in different contexts to inform the others and my own understanding. I consider the cross referencing of data and findings, not just for one medical condition, but across disciplines vital to extending understanding of conditions and potential treatments the BRUs and the relationships between them, not just in Leicester University, Loughborough University, UHL, but nationally and internationally vital. Phil Caldwell I joined the group having spent two years on the Cardiac and Pulmonary PPI group, of which I am still a member. In that group I was fortunate enough to be part of a team working on the 'Activate Your Heart' project and through that experienced the benefit of past patients ( I had a heart attack in 2010 and subsequently went through rehab) working closely with the professionals and inputting our own experience to bring about a really successful outcome, in this case a system which is already being seen to increase cardiac rehab uptake in our region. Seeking further involvement of a similar in-depth nature I joined the cardiac PPI group in the summer of 2013, and have enjoyed both learning about the range of projects currently being undertaken and participating in giving feedback on some of these projects. I hope to become involved in specific projects in the near future, and with this in mind have joined Gavin Murphy's recently established steering group. There is so much groundbreaking work going on in this and

8 related fields, and ample scope to draw on the resource and experience of PPI members, so I am happy to be a part of this partnership and bring to the table whatever assistance I can. Ballu Patel I have CVD and the effects have been life changing and lasting. The support that has been given to me by the clinicians and other staff has been outstanding and so in return I wanted to offer something back even if it is limited in terms of experience or knowledge. The Patient and Public Involvement Group (PPI) offer me the opportunity to hear about the latest research being undertaken within the Trust and allow reflections from the patient perspective. The presentations and discussions with the researchers and consultants are in a language that allows lay members to understand medical developments and also has room for meaningful discussions to take place. I look forward to each meeting to hear about these developments and also to be able to engage with other lay members. During 2011 the PPI Officer was actively involved in designing and delivering training for people involved, with colleagues from the local involvement collaboration LNR REPP (now East Midlands Research Engaging with Patients and the Public). Since 2010 we have built partnerships with stakeholders in healthcare, research, sport, local government and the community. Partnership working with these organisations is evident in the BRU involvement in community events like SkyRide, community health fairs, sport events and local groups and clubs. This year the British Heart Foundation have invited us to have a presence at some of their national events, so people can find out about our BHF funded research. A number of key resources have been developed since 2010 in partnership with PPI Group, including newsletters, poster display materials, expression of interest forms for the PPI group, newsletter mailing list postcards, patient produced information (leaflets, posters, fliers and bookmarks) on Spontaneous Coronary Artery Dissection, a short film about the BRU, our website and social media sites. The BRU annually hosts open days now in partnership with the other Leicester BRUs, and other research groups though no longer at the unit as the events have been obliged to move to a larger venue to support the level of interest from both patients and the public and research personnel.

9 Aims and Objectives The objective of involvement in LCBRU is to ensure that the research supported by the BRU genuinely addresses patient and public need in translation to healthcare. In this, involvement will safeguard the public interest and the BRU will develop a reputation for excellence. LCBRU commits to public and patient involvement as a means to ensure patients and the public have the opportunity to contribute to the research agenda strategically and operationally. LCBRU aims to: 1. Facilitate a PPI Group of patients and the public to review all new non-commercial research projects, and be made aware of and where possible review all commercial research projects supported through the unit. 2. Raise and maintain awareness of the unit and research generally in the community. 3. Support patients and the public to contribute to the strategic research agenda. 4. Work with local stakeholders and develop partnership working. 5. Work with patients and the public to deliver the research they want.

10 Resources Achieving the aims and objectives of this strategy is made possible by comprehensive resourcing of the associated projects and processes. This includes: An annual budget of 10,000 which pays for room hire, catering, refreshments, mileage and parking expenses, display materials, newsletters and other media, training and conference attendance for PPI Group members. A full time band 7 PPI and Governance Officer (half time WTE for PPI) benefitting from 10 years experience in patient and public involvement. This post creates synergy between the internal and external governance processes. The Officer is supported by access to University and Hospital teams specialising in communications, media, information technology and graphic design. A range of stakeholders from the statutory, not-for-profit, and independent sectors, service users and carer groups support the PPI Officer particularly around access to events, stakeholder media and opportunities to give talks and demonstrations. Funds are available to support the PPI Officer to attend relevant national conferences and training events.

11 Action Plan: Delivering a PPI Group The Unit will facilitate a PPI Group of patients and the public to review all new non-commercial research projects, and be made aware of and where possible review all commercial research projects supported through the unit. Activity Outputs Provide regular opportunities for researchers to access patients and the public in respect of their studies. Meet monthly Support 24 researchers per year to access patient / public perspective. Maintain a committee of at least 5 people. The group met 10 times with between 3-10 members and reviewed 14 studies. A focus group of 38 AS patients reviewed one study. Increase the meaningfulness of involvement. All researchers accessing the group to complete a premeeting brief specifying what they want from the meeting. This is to be provided to members 2 weeks before the meeting. Feedback to be provided to researchers in minutes copied to the Chair of the Translation Medicine Facility Operational Group (who decide what studies to support) and the Manager of the BRU to build in some level of accountability. The group met 10 times, with between 4-8 members and reviewed 15 studies (46% of new studies). A focus group of AAA patients reviewed 2 further studies. Members sat on 3 study steering committees. A PPI training session was delivered. Briefs were made available for 11 of the 15 studies reviewed. All meetings were minuted, and these were shared with the TOG Chair and the BRU Manager. PPI Training (1 day) was delivered and attended by 8 people. A report was given to the Management meeting. Briefs were made available for 7 of the 14 studies reviewed. All meetings were minuted, and these were shared with the TOG Chair and the BRU Manager. 1 group member was supported to attend 2 conferences (the opportunity was made available to all members) All members were offered access to a short course on involvement but declined. A report was given to the Management Meeting. The group met 9 times with between 5-8 people and reviewed 21 studies. Two focus groups with 6 and 20 SCAD patients took place to formulate the SCAD study proposal. Briefs were made available for 15 of the 21 studies reviewed. All meetings were minuted, and these were shared with the TOG Chair and the BRU Manager. All members were offered access to a short course on involvement but declined. A report was given to the Management Meeting.

12 Grow the group into a larger body Demonstrate that members of the committee have been supported to attend relevant training. Annually report to the BRU Management Meeting. Through the awareness workstream, recruit new people to join the committee. The group was set up with 10 members. 2 new members joined the group. 1 new member joined the group.

13 Action Plan: Delivering Research Awareness The unit will raise and maintain awareness of the unit and research generally in the community. Activity Outputs Produce 4 newsletters per 2 newsletters were year produced and distributed. Maintain a BRU Facebook Page Attend and organise events for the public, patients and the research community to attend. Host BRU Open Days Produce 4 accessible newsletters per year and distribute these in the community. Develop a growing mailing list of patients and the public who want to receive the newsletter and other updates about the BRU. Continue to announce all BRU public events on the facebook pages and announce up to date news. Grow membership of the facebook page. Engage in 12 events per year in the public forum providing information and opportunities to get involved to patients and the public. This will support the growth of the mailing list and PPI committee. Annually have an Open Day at the Unit for patients and the public to visit, meet researchers, and find out what they have been up to 2 newsletters were produced, including articles by members of the PPI Group, and were distributed through events, stakeholders and the mailing list. The mailing list grew by 46%. The twitter account is popular with 60 followers, and the number of people liking the facebook page is growing at events, with a footfall of 14-16k were attended. 50 members of the public and 40 researchers attended the open day, hosted in partnership with local NIHR Infrastructure. The twitter account is popular with 65 followers, and the number of people liking the facebook page is growing slowly at events, with a footfall of 18,200 people were attended. 68 members of the public attended the open day (now moved to a larger community venue due to demand), hosted in 4 newsletters were produced, including 2 themed editions to celebrate the NIHR Research Changed My Life campaign and International Women s Day. These were distributed at events and through the mailing list. The twitter account is popular with 127 followers, and the number of people liking the facebook page is growing more rapidly at events, with a footfall of 4,500 were attended. XX members of the public attended the open day (now moved to a larger community venue due to demand), hosted in

14 Maintain PPI webpages on the BRU webpages locally. Continue to maintain relevant pages of the BRU webpages. The Unit has maintained an effective online presence, and is undertaking ambitious redesign of the webpages. partnership with local NIHR Infrastructure. The PPI group helped the Unit continue to redesign and improve its webpages, and these were updated frequently. partnership with local NIHR Infrastructure. Webpages were frequently updated.

15 Action Plan: Delivering Involvement in LCBRU Strategy and Internal Governance The unit will support patients and the public to contribute to the strategic research agenda. Activity Outputs Use online surveying tools like Survey Monkey to gauge public opinion This was attempted once in 2010 but has since not been used. This was attempted once in 2010 but has since not been used. Provide information about BRU strategy to patients and the public Support representations of patients and the public Twice a year seek patient / public opinion on relevant strategic issues through survey monkey. Use survey monkey to facilitate comment on individual studies where PPI has been difficult. Share information about the research strategy in the BRU in the newsletter, webpages and facebook page and source comments. Ensure representation of patients and the public at the BRU Board and Management meetings. Report annually to the BRU Management Meeting. Media were produced and updated but there was little interaction. Roy Dick attended the Management Meeting and a report was delivered to the Management Meeting in March. Media were produced and updated and distributed to a wider group with limited interaction. Roy Dick attended the Management Meeting and a report was delivered to the Management Meeting in March. This was attempted once in 2010 but has since not been used. Media were produced and updated and the facebook and twitter communities are starting to get going with real interaction, especially around the SCAD project. Roy Dick attended the Management Meeting and a paper was submitted to the Management Meeting in October.

16 Action Plan: Delivering Partnership Working and Stakeholder Involvement The unit will work with local stakeholders and develop partnership working. Activity Outputs Work with special interest and support groups locally. Work with the local HealthWatch (formerly LINKS) Distribute newsletters to local support and interest groups, Take Heart Leicester and the BHF Heart to Heart Group. Support local groups by providing stories for their newsletters. Use local groups to access a wider population of patients and the public. Invite local groups to Open Days and events. A member of HealthWatch will sit on the PPI Committee and feedback our work to them, and feedback any comments to us. The listed actions were successfully delivered with a range of stakeholders. The listed actions were successfully delivered with a wider range of stakeholders and in some cases, in partnership with local NIHR Infrastructure. The listed actions were successfully delivered with a wide range of stakeholders and in most cases, in partnership with local NIHR Infrastructure. The same HealthWatch representative has sat on the Committee throughout the 3 years to date. Engage with the UHL Foundation Trust Membership Circulate the BRU newsletter to the membership via the PPI lead for the Trust. Support Trust events like the health fair at the AGMs by attending with display materials. The newsletters have been distributed to membership by . Attended the UHL UKCRF Open Day event and two CLRN events with an information stand and display, newsletters, etc. The newsletters have been distributed to membership by . Attended the UHL annual public meeting with an information stand and display, newsletters, etc. The links to the online newsletters have been distributed to membership by (due to a policy change in the UHL). Attended the UHL International Clinical Trials Day event and a series of 3 UHL NHS Change Day events with an information stand

17 Engage with UHL Patient Advisors Representatives from amongst the Trust Patient Advisors will sit on the PPI Committee and feedback our work to the Patient Advisors, and feedback any comments to us. and display, newsletters, etc. 3 Patient Advisors continue to form membership of the PPI Group.

18 Action Plan: Delivering Patient Led Research The unit will work with patients and the public to deliver the research they want. Activity Outputs Maintain patient leadership of the project Draw up a BID and REC application in partnership with patients The BHF have funded the project and REC favourable opinion has been received. Explore how to have patients named as researchers on the application in terms of approval requirements. Produce SCAD research website requested by patients Maintain patient involvement in the project supporting recruitment / publicising the SCAD recruitment portal, developing SCAD information and materials and helping out at public events. Patients have been named on the application. The SCAD recruitment portal and associated webpages are online. Over 100 SCAD patients have expressed their interest in participating in the research through this site from as far afield as Europe. SCAD patients have distributed our SCAD and general media through their social networks. They have developed a series of posters, leaflets and bookmarks about SCAD, which are used generally but notably were distributed at the Society of Interventional Cardiologists annual conference to all delegates. Patients, in partnership with the lead researcher Dr

19 Adlam delivered a talk about the project at the Joint BRU Roadshow and help staff an information stand at the BHF Vale of Belvoir Bike Ride where the SCAD project will be launched.