Public Involvement

The following links will take you to some places on the internet where you may be able to locate these third sector organisations.  RDS South Yorkshire provide a searchable PPI database focused on third sector organisations interested in health research.  Sometimes the best way to find what is going on is to search the internet or ask people.

Do bear in mind that things can change very quickly in the third sector, and so some entries may be out of date, and some groups are run from the organiser’s home, so contact arrangements may be designed around their other commitments!

Nottingham and Nottinghamshire

• Self Help Nottingham Directory
• Nottingham CVS
• NOTTLOG - Organisations in Nottingham 
• Nottinghamshire Community Groups 

Derby and Derbyshire

• Derbyshire City Council - Community Directory
• LIDNET - Life In Derby NETwork
• Community Directory Derbyshire 
• Derbyshire Healthcare Trust Patient Information             

Lincoln and Lincolnshire

• Lincolnshire County Council - Community Groups
• Charities and Voluntary Organisations

Black and Minority Ethnic Communities

• Community groups for BME Elders in Nottinghamshire, Derbyshire and Lincolnshire

  Third Sector/Charities

  • Find a charity through Local Giving

These options are explained in a little more detail below. You can also check out what you might need by following this 'getting permission' flowchart - to use the flowchart simply view it as a slideshow.

Giving Permission

As well as you getting permission to be involved in the activities of the CLAHRC, you may also need to give your permission. For example, if you are photographed or filmed, CLAHRC would need your signed consent to use that photograph or film on its website or in other publicity. See the CLAHRC Photography and Film Consent form.

Registering as a Volunteer

Each NHS Trust has arrangements in place to register volunteers and this may be the best route if your main work is with a particular Trust. If you are mainly involved with CLAHRC rather than an individual Trust then our hosts, Nottinghamshire Healthcare will register you as a volunteer. The arrangements at Nottinghamshire Healthcare NHS Trust are explained in more detail here, and you can obtain an application form here. Registered volunteers are protected by the Trust’s insurance cover and can be issued with a formal identification badge when appropriate. The general rule is that you should register if are involved in anything that is confidential or where you represent the CLAHRC to patients.

Keeping people safe

The Government replaced the Criminal Records Bureau with the Disclosure and Barring Service in December 2012. A useful summary of the impact on volunteers is available here.

Research Passport

The University has an obligation to check that people joining research teams are suitable. To do this, a special bundle of papers is assembled and checked, allowing a document called a ‘Research Passport’ to be issued. The Chief Investigator for the research study you are to be involved with will guide you through the process if you need one to cover your involvement in the study. This normally just applies to community representatives who get involved in data collection or handling. More technical information is available here and here.

Letter of Access

NHS Trusts have a duty to check that people entering their buildings and making connection with patients are suitable. If you are invited to join a study team and your involvement means that you will enter NHS premises, then you may need a ‘Letter of Access’ to give you permission to be there. The Chief Investigator for the research study you are to be involved with will guide you through the process.

Honorary Contract

If your involvement with the research study puts you into a relationship with patients where you might be considered as a member of the treatment team, then you may be issued with an ‘Honorary Contract’. This is usually set at zero hours, so no payment is involved, but formalises the relationship between the NHS and yourself in order to keep everyone safe.

Confidentiality

CLAHRC-NDL staff will keep all personal information confidential so that personal matters are not disclosed to anyone else. The exceptions to this are when you give your permission or when there is an overriding need to prevent crime or serious harm.

Research participants are always briefed about their potential involvement and then asked to sign a document indicating whether they have given informed consent.

If you become involved with a study team as a co-researcher or by attending a meeting about the study you may hear something that should be kept confidential. This might relate to a person or be an idea that belongs to CLAHRC-NDL and should not be shared with other organisations. This expectation to maintain confidentiality is normally kept informal, although a proforma is available here, should a particular team wish to formalise the process.

Particularly sensitive information should be marked ‘confidential’, should not be circulated electronically and a signed register can be taken at meetings where it is shared – but this is likely to be very unusual in an organisation funded through the public purse. Every effort should be taken to maintain proper standards in relation to confidentiality, and breaches should be discussed with the person concerned and action taken as appropriate. 

Recognition as an author

Getting involved in research as a member of the public or person who has used services may lead to an opportunity to co-author a publication. Whilst this can involve a lot of work, it can be worthwhile and personally satisfying. However, you need to be aware of your rights and responsibilities. The points below form an introduction.

• Some papers have several authors listed at the beginning of the paper and then a list of contributors at the end of the document who have been described as ‘gift and guest and ghost authors'¹. To avoid conflict later, it is best to make sure that everyone is clear before they begin whether and where their name will appear.  
• Arrangements vary for press releases, peer-reviewed and non-peer reviewed journals. Individual journals provide guidelines to prospective authors on their website. A peer-reviewed journal will insist that the paper is submitted with the author’s names on a separate sheet, so that the reviewers can consider the paper without being influenced by the reputation of the author.  Internationally agreed guidance has been given on how to report patient and public involvement reporting in research papers. You can find it here.
• Journals may require authors to sign a legally binding declaration to say that the material has not been published before and is the original work of the authors.
• The principle of intellectual copyright means that the person or people who create original work have the right to be identified as their creator, control their distribution, object to their distortion or mutilation and obtain economic rewards for their efforts.
• Using another person’s work without acknowledging it as theirs (plagiarism) breaches intellectual copyright. When an item is submitted for publication, the contract transfers some of these rights from the author to the publisher.  
• When books and journals are sold or sections photocopied, some of the profit belongs to the author. Collection and distribution of this profit can be administered by ALCS in respect of all books, and for journal articles for a period of three years after publication.
• Universities and their staff are evaluated against the Research Excellence Framework that includes a rating of publications. Journals and individual papers are considered more prestigious by academics if they are referred to frequently in subsequent publications. Specialist websites keep track of which papers are quoted, and perhaps add the opinion of experts to form a 'citation index' (see a medical example and a business studies example), that is used to judge the importance of a journal or an individual paper. Outside the university, quite different journals are influential, and some employers are impressed by evidence of publication, wherever the work appears.
• Some, but not all observers give additional status to the first, second and final name in a list of authors, but the Vancouver Guidelines advise readers to infer nothing from the order of authors, since conventions differ.
• Anyone who is named as an author will normally have made a substantial contribution to the ideas that are presented, been involved in collecting, analysing or interpreting any data that is reported, drafted or revised the text and approved the final version. They will also be confident in their co-author’s contribution and integrity.

¹ Carter S (2010) Authorship: Definitions and declarations—A perspective from the BMJ The Write Stuff Vol 19, No 1, p18.

• Many individuals get involved in the community, the NHS and research without any money changing hands. A smaller number of people claim expenses so that they are not out of pocket because of their involvement activities, and a very small number of specific, monitored duties attract payment for time in addition to expenses.
• The following activities may attract payment for time: active participation in working groups, committees, recruitment panels; giving presentations or running training events; participation in high level working groups, committees (such as at a national level); consultancy; project work and chairing groups. In each case, the role will be advertised as attracting payment, the person will have applied and been selected for the role, and they have been judged to have completed the task to the expected standard. Rates are currently £9.50 an hour, £19.50 a session (of up to 3 hours) and £10 per task. Rates for giving presentations and other activities are set out in the detailed policy.
• In contrast, the following activities do not attract payment for time: voluntarily attending a meeting or event; giving views as part of a consultation exercise or survey, or when the person has chosen to work on a voluntary basis. People who are in receipt of a salary and can legitimately engage in the PPI activity as part of their working day are not eligible for payments for their time.
• Expenses may include: 
  a) 'home to involvement site' bus or rail fares or mileage (40p per mile), taxi where necessary(other vehicles are listed in the full report along with the appropriate mileage rate)
  b) meal costs (up to £5 for lunch if the event takes more than 5 hours and includes noon to 2pm, and up to £15 for an evening meal if the event involves an overnight stay and lasts more than 10 hours)
  c) childcare, replacement carer or personal assistant costs (£20 per day)
  d) postage, stationary, and phone (actual cost that was necessary for involvement in CLAHRC-NDL).
• Whenever possible, expenses are reimbursed on the same day. Payments are made for the exact expense, rather than an estimate, and receipts are required to give evidence of the amount. Payments for carers and assistants are made directly to the carer or assistant concerned, rather than to the person being supported.
• Some reference material on payments for involvement in research is available:
  a) See the Derby City payments policy and the INVOLVE payments policy.
  b) A recent academic paper reviewing the practice of paying people for their involvement is available here.
  c) To find out more about what the public needs to know about payments for involvement, see this INVOLVE publication.
  

  d) See specific advice from INVOLVE for researchers on making payments to people.
  e) See an example of payment rates at INVOLVE.

See also further advice to help academics and clinicians write in plain English, using everyday words; and to give effective press and radio interviews.

Research can be better

Research can be of higher quality, as the design and methods can be tested by people from a wide variety of perspectives –the public help to ensure that the right questions are asked in the right way.

• Research topics and processes can be selected which are more relevant to the public’s perception of need and priority and so would be more acceptable to the public.
• Participants in clinical trials may be more likely to engage and stay engaged if they receive good quality, relevant information and stay involved in the research process.
• Researchers may be more likely to obtain funding if the public are involved.

Service improvement can be faster

• Involving people from the beginning can keep the research work focused on the impact on patient care and potential for service improvement.
• When commissioners and managers have to explain their plans and their actions to the public, the quality, pace and delivery of their planning can improve, along with the effective use of limited resources.
• Services can be held to account for their implementation of the improvements if the public understand what should be going on. In addition, public involvement in quality monitoring can check that so-called improvements actually deliver benefits.

Communication can be stronger

• Messages reach audiences best when those audiences have been listened to first.
• Messages are presented in a more appropriate format for diverse audiences and people without academic or clinical skills, and this helps the professionals to focus on the main messages too.
• Dissemination can be more effective if the findings are disseminated by the public working alongside researchers and clinicians, especially where these presenters focus on the key messages and explain things in an accessible manner.
• A wider audience can be reached if a variety of presenters are engaged in taking the messages out.
• Effective listening to the public can provide an early alert about anything that might be going wrong.

Personal Development can be more powerful

• It can empower members of the public, helping them get what they want and helping them to feel valued, potentially reducing Exchequer costs in the long run through improvements in physical and mental health, social capital and self-care.
• Researchers and clinical staff can learn new skills in involving people, which will enhance their effectiveness and strengthen their CV.
• It helps to create a personal and organisational culture of candour, accountability and local ownership of local services.

Some of the evidence for these claims can be found here.  

The statements here are listed in date order, with the most recent at the top.

April 2012.  How CLAHRC-NDL is responding to the Patient and Public Involvement agenda.

March 2012. The CLAHRC Board agreed to (1) place Board minutes on the website; (2) pursue the goal of including PPI reps on recruitment and selection panels for CLAHRC-NDL jobs. Considerable work may be needed to amend the recruitment procedure. 

January 2012. Complaints mechanism established.

October 2011. A Strategy and action plan drafted to strengthen involvement in the period 2011-13.

October 2011. Peter Bates contracted to work two days a week for CLAHRC-NDL as Patient and Public Involvement lead until September 2012.

September 2011. The Board welcomed the Stocktake report on Patient and Public Involvement and accepted all of its recommendations.

July 2011. CLAHRC-NDL Senior Leadership Team received the Stocktake report and approved all recommendations for approval by the Board.

May and June 2011. Half-way through the CLAHRCs five year programme, a Stocktake was commissioned to check how CLAHRC-NDL was engaging with the public. 

2009. At the outset, every study proposal submitted to CLAHRC-NDL had to be approved by a team that included service users and carers – the Populos Panel offered rigorous and challenging advice to study applicants.