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September 2019 edition
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Patients and the public

September 2019
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Palliative Care Review Now Published

The review can be downloaded  here.

Background: Patient/carer involvement in palliative care research has been reported as complex, difficult and less advanced compared to other areas of health and social care research. There is seemingly limited evidence on impact and effectiveness.
Aim: To examine the evidence regarding patient/carer involvement in palliative care research and identify the facilitators, barriers, impacts and gaps in the evidence base.
Data sources: Electronic databases were searched up to March 2018. Additional methods included searching websites and ongoing/ unpublished studies, author searching and contacting experts. Eligibility criteria were based on the SPICE (Setting, Perspective, Intervention, Comparison, Evaluation) framework. Two quality assessments on methodology and involvement were undertaken.
Results: A total of 93 records were included. Eight main themes were identified, mainly concerning facilitators and barriers to effective patient and carer involvement in palliative care research: definitions/roles, values/principles, organisations/culture, training/support,
networking/groups, perspectives/diversity, relationships/
communication and emotions/impact.



Evidence on the impact of involvement was limited, but when carried out effectively, involvement brought positive benefits for all concerned, improving the relevance and quality of research. Evidence gaps were found in non-cancer populations and collaborative/user-led involvement.
Conclusion: Evidence identified suggests that involvement in palliative care research is challenging, but not dissimilar to that elsewhere. The facilitators and barriers identified relate mainly to the conduct of researchers at an individual level; in particular, there exists a reluctance among professionals to undertake involvement, and myths still perpetuate that patients/carers do not want to be involved. A developed infrastructure, more involvement-friendly organisational cultures and a strengthening of the evidence
base would also be beneficial.

Supporting collaboration in learning and development for patient and public involvement (PPI)
See the full article here.
In the autumn 2016 edition of the NIHR INVOLVE newsletter, we reported on the development of the Sharebank, a network for training, learning and development in patient and public involvement (PPI).

It brings together people from different organisations, including staff and patient/public partners, to share their training, knowledge and resources relating to PPI.
In 2015/16, the Sharebank was piloted amongst five organisations: two NIHR Biomedical Research Units in Nottingham (Hearing and Digestive Diseases); the NIHR East Midlands Collaboration for Leadership in Applied Health Research and Care; NIHR East Midlands Research Design Service; and the Nottingham University Hospitals NHS Trust Research and Innovation team. Since that time, the Sharebank has expanded to include 14 research-active organisations in the East Midlands and it continues to grow!

This grassroots initiative works in full partnership with staff and patient/public contributors and uses a mutually agreed terms of reference. It is built on the goodwill, hard work and mutual trust of those involved.
How can community organisations support clinical research?

See the full report here.
For the health of society, and the integrity of science, we expect medical research to reflect the diversity of human society. For numerous reasons, this is not always the case.  But community organisations could hold the solution to this. 
Research has shown that some groups in society are less likely to be involved in research due to issues around:
  • Communication on the commitment required, and the benefits of, research
  • Awareness of, and referrals to research
  • Trust and reciprocity    
So how can researchers work with community organisations to strengthen and broaden participation in research, and in turn provide more opportunity for these organisations to utilise and deliver their skills?  These organisations could provide support including:
  • Communicating the benefits of being involved in research, through co-creating specifications and materials with different groups
  • Raising awareness of clinical research projects, reaching a broad range of participants through community networks, and small focus groups in appropriate settings
  • Building trust by engaging with different groups in a way that is respectful and reciprocal
But what are the practical steps that researchers and community organisations can take to start working together?  Is this something both sides would value? 
We are interested in exploring this further and would really value your time, either through an email with your thoughts, at jackannette0@gmail.com.  If you would like to speak in more detail about your experience, or what you would find useful, please don’t hesitate to contact me.   @NIHRINVOLVE are planning to host a Twitter poll on this topic in the near future. 
Diversity and inclusion in dementia research

Lucy Whitman is a writer whose books include Telling Tales About Dementia: Experiences of Caring, and People with Dementia Speak Out.

Care interventions to support people with dementia from ethnic minorities must be evidence-based to receive funding, but what if research is lacking? Lucy Whitman investigates whether minority ethnic groups are being overlooked by the research community.  Read her paper here.   
90% of research participants have a good experience

In the 2018/19 Research Participant Experience Survey, 90% of respondents agreed or strongly agreed that they had had a good experience of taking part in research.  Five key areas of importance to participants have been identified which will be used to inform study design and delivery in the future. Read the full report here.
New NHS trust tops clinical research league table for first time in 8 years
The league table is published by the NIHR Clinical Research Network and provides a picture of research activity across all NHS trusts and CCG regions in England. The table data includes how much clinical research is happening, where, in what types of trusts and involving how many patients.  Read about it here.
Over 20,000 research participants recruited through Join Dementia Research

We’re pleased to announce that over 20,000 study participants have been involved in vital research thanks to Join Dementia Research, the innovative service delivered by the NIHR. We would like to sincerely thank everyone who has given their time so far. If you haven’t already, please sign up, and if you have, please help us spread the word so we can bring more volunteers and researchers together.  Read about it here
Patient, public involvement and engagement (PPIE) Small Grants Scheme: Awards announcement

This round of the Scheme set a focus on applications supporting diversity, inclusion and co-production in public involvement in research. With over 50 applications received from across the network 10 awards were made in August. For further details and to keep in touch with news please visit the site here.  
Lay Research Review Panel

Integrating Patient and Public Involvement into the beginning of sexual health research.

The  British Association for Sexual Health and HIV/ Terence Higgins Trust (BASHH/THT ) Lay Research Panel is an important resource for researchers applying for or setting up sexual health  research.  Most organisations now require patient and public involvement (PPI) to be part of the projects they choose to fund.  This is because we know that PPI results in more robust and acceptable research. 
Finding people to be involved in sexual health research can be challenging which is why BASHH/THT set up a joint Lay Research Panel.  Comprising a diverse range of lay reviewers who have received training in peer review, the panel offers an opportunity for researchers to have their proposal and/or research materials (e.g. participant information sheets) reviewed by the lay panel.  The panel can also help recruit lay members for steering groups. 
To submit a project for lay review, please go to the panel's  w
ebsite where you can find more information and download an application form.
 
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