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Engagement of the Public in Research

1. Purpose

1.1 Durham recognises the unique and integral role that the public play in its research and in its work more broadly. As the Concordat for Engaging the Public with Research notes, such engagement brings many benefits, including:

a) improving the quality of research and enhancing its impact through bringing new research perspectives and widening research horizons;
b) enhancing the profile of researchers, their research and institution;
c) providing opportunities to influence and network with other researchers and the wider community leading to new collaborations and partnerships, and gaining additional funding;
d) enhancing career progression and development of transferable skills; and
e) enriching and benefitting society and the public themselves.

1.2 This policy sets out the support and expectations of the University of those who contribute to its research, and provides clarity on what those involved can expect from the University.

2. Scope

2.1 There are three main ways that the public can become involved in the University’s research.

a) Patient and Public Participation (PPP): taking part in study as a participant / subject – providing data and input.
b) Patient and Public Involvement (PPI): this is an active partnership between the researchers and the public, and is ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them as in Patient and Public participation. For example, citizen science.
c) Patient and Public Engagement (PPE): this is about how information and knowledge about research is provided and disseminated.

2.2 Common to all areas is the concept of voluntary involvement of the general public or specific groups, the members of which meet criteria that fall within the area of study. The concept of being a volunteer is key (although some volunteers are sometime provided with compensation – see payment). Volunteers are not employees of the University and are not a replacement for paid staff. They can be members of staff or students but to be classed as research participants their involvement must be separable from their studies or contract of employment. This policy applies to involvement (PPI) and participation (PPP).

2.3 Key to the concept of involvement and participation is the concept that both the research and those giving their time benefit. These benefits differ from project to project and can include: satisfaction in advancing the knowledge base, enjoyment, or social benefits, through to (in the case of citizen science) acknowledgement in research outputs. For this reason and to avoid the public being seen as ‘cheap labour’, researchers are not permitted to ask volunteers to undertake tasks which they themselves could undertake solely to save time or money. Such tasks may be outsourced, but this would be considered as subcontracting, and not a form of PPI or PPP.

3. Rights and responsibilities of the public involved and participating in research

3.1 The University recognises that fair, equitable and respectful treatment of those involved in its research is not only essential to guaranteeing the quality of its research but also its ability to undertake research effectively in the long-term. The principles outlined below represent the minimum standard for any members of the public involved in or participating in its research.

3.2 Your rights:

a) You are free to express your opinions and views, and your individual contribution will be valued.
b) Your individual needs will be recognised and fairly addressed.
c) You will be treated with dignity and respect, and the research will be conducted in accordance with the University’s commitment to Equality, Diversity and Inclusion.
d) Your safety and wellbeing are of paramount importance, and every care will be taken to ensure that these are protected. You will be informed of any potential risks involved in taking part in the research.
e) Your personal data will be kept secure and will not be shared outside the research team without your consent. You will be informed about how your data may be used and under what conditions (if any) it may be shared.
f) Your involvement is voluntary, and you will be free to withdraw without negative consequence at any point.
g) You will be informed about the aims and purpose of the research, the funder (where applicable) and the research team involved.
h) You will be provided with information on all applicable rules, regulations and laws that apply to the research.
i) Your contribution to the research will be acknowledged in line with University and Disciplinary best practice, including where appropriate in formal research outputs.

3.3 Your responsibilities

a) You should show respect for others involved in the research including fellow participants and staff. This includes respecting the rights outlined above.
b) You should enter into and engage with the research project honestly and in good faith.
c) You should raise any concerns as to the conduct of the research, safety of participants or other significant issues with the project team or other appropriate University officer.
d) You should follow in good faith all rules, regulations and laws applicable to the research.

3.4 If the research team fails in its obligations to you the University will investigate. If appropriate, it will sanction the responsible members. In the same way, if you breach your responsibilities, the University will investigate and may apply sanctions, which may include asking you to step aside from the research and precluding future involvement. In cases where a criminal act occurs the University will notify relevant authorities.

4. Payment of the Public involved and participating in research

4.1 In the case of participation, participants may be required to take part in tests or other activities, submit measurements or be interviewed. They may be paid a small sum to cover out of pocket expenses and as compensation for time or inconvenience.

4.2 In the case of involvement in research, volunteers are invited to attend meetings to give their views on various matters to inform the research process and direction. Often, they will be former or current patients, representatives of particular groups such as retired people, or representatives from charities. Payment may be made to them for their participation in the meetings.

4.3 Some of the volunteers may be members of staff of the University, but their participation in research is not part of their duties of employment and they do it in their own time and are
Policy on the Engagement of the Public in Research: October 2022
under no obligation to take part. It makes no difference if a volunteer is used on a regular basis as long as no employment relationship is established for their 'volunteering' activities.

4.4 Models for calculating fair payment The amount paid will depend on several factors but will normally be enough to cover out of pocket expenses such as travel, subsistence and, where appropriate, compensation for their time spent. Criteria for payment might include: travel and subsistence (using University standards as a guide), nature of the tasks, length of task, discomfort, need to attract groups, prevailing University and funder guidance. The University does not operate a wage model for calculating payments for participation or involvement, this is because if the reward is calculated as a wage or equivalent it becomes remuneration. Rather it supports a reimbursement model where those involved can recover actual expenses, such as travel, meals, and parking, or to pay an average sum that covers these across the study. It does however recognise that this will sometime be insufficient to attract the required cohort. In this case it supports researchers to increase the payments to a ‘market rate’ to facilitate recruitment. There are other considerations to be taken into account here, including impact to benefits (covered below) and to ensure the figure is not coercive. It is expected that any payment beyond reasonable expenses would be considered as part of ethics review.

4.5 Indicative Reimbursement Thresholds Up to one hour More than one hour 1/2 a day Standard £10 £20 £50 Invasive/Intensive £20 £50 £100 The above table is only a guide and researchers are free to vary the level of reimbursement, including down to zero, provided that those involved are benefitting from the research and that the level does not jeopardise the fulfilment of the research goals or other requirements.

4.6 When Payments should be made Completion bonuses or full payment only upon successful completion of the study procedures should not normally be permitted. Pro rata payments should always be offered to participants based on the amount of time completed or number of research procedures undertaken unless robust justification (e.g., methodological reasons) can be provided for not doing so. Such payments should be detailed in the participant information sheet.

4.7 Means of Payment Payments to volunteers will be made by vouchers from retailers. They should never be paid either out of the personal pocket of an individual staff member (and then subsequently reclaimed) nor out of departmental petty cash.

4.8 Tax and benefit implications There are potential tax and benefits implications where there is any form of re-imbursement beyond reasonable travel and subsistence costs from participation and involvement. Where this applies, researchers are expected to highlight this and provide (as much is practical) guidance to support those involved to navigate and understand the potential impacts, and signpost them to further guidance. More detailed guidance is available in appendix one. Note that the use of vouchers to reward participants does not negate tax or benefits implications, Recent guidance from the National Institute of Health Research states that: “High Street” or gift vouchers may be treated as earnings, and viewed by the benefits authorities in the same way as other forms of payment. These payments need to be declared in the same way as cash, cheques or bank transfers.

5. Help and Guidance

5.1 For the public. If you become aware of any issues with your involvement / participation then the first port of call is to raise your concerns with the project team. The main exception to this is where there is an immediate concern around safety in which case it should be reported to the relevant authorities. Other exceptions are where you believe reporting to the project team would prejudice a future investigation, or where you have already raised an issue and it has not been acknowledged or addressed. In these two cases you can raise your concerns with the Deputy to the PVC Research via

5.2 For researchers Guidance can be accessed via the research governance and ethics toolkits, your Departmental Ethics Advisory and the Research Policy Team in Research and Innovation Services.

6. Related Information

Appendix 1: Tax and Benefit Implications of Engaging the Public in Research

The guidance in this area is not settled and the below represents the understanding of Durham University as of January 2022. It is by necessity very general and if there is any doubt or uncertainty then expert advice should be sought from the Department of Work & Pension (DWP) and/or HM Revenue and Customs (HMRC).
Tax Implications for the University - It is important to be aware of, and support participants in understanding, the potential tax implications of paid involvement. In its Employment Income Manual, HMRC includes the section EIM71105: Research volunteers, lay participants and participants in clinical trials. HMRC advises that, as long as no employment relationship exists, “HMRC agrees that the amounts paid to those concerned are unlikely to fall within the definition of ‘earnings’ for PAYE or NI purposes,” and as such PAYE and NIC do not apply. This means there are no tax implications for the organisation engaging with the participants. The guidance does note that HMRC “is entitled to ask for details of payments to non-employees at their discretion; but they would not routinely ask for details for small payments such as these” and so a robust record keeping process for any payments must be in place.

Tax implications for the public - In terms of tax implications for the recipients of any payments, EIM71105 states: There will be no tax or NIC liability arising on the individual if the sums received do no more than reimburse the individual’s reasonable costs of participating in the trial or research, including costs of travel and subsistence. However, in terms of sums that exceed the reimbursement of reasonable expenses, HMRC states that the amount in excess of expenses reimbursement may be classed as Miscellaneous Income, and as such may be subject to a tax liability for the participant, “which should be notified to the HMRC under Self-Assessment”. However, individuals can earn up to £1000 per year (from self-employment or miscellaneous income) before they have to register for tax self-assessment (this is known as a trading allowance).

Benefits implications for participants - Any additional income may impact an individual’s benefits and it is important that participants understand the potential impacts, and their responsibilities on reporting income to the DWP. Income from participation is likely to affect Universal Credit and the calculations can be complex with details not easily available as the system continues to undergo revision.
Potential participants can be supported to navigate the system correctly, and benefit from their participation, rather than being discouraged by the bureaucracy and fear of sanctions or income loss. However, minor issues (whether by error or omission of the individual, or a mistake at the DWP’s end) can cause sanctions which may have a disastrous impact on a participant. There is much evidence that many claimants find these issues very challenging to navigate on their own.

Despite the risks associated with misinforming people, sensitively supporting individuals to navigate the benefits system to enable them to participate without fear of sanctions is considered best practice, especially when seeking to increase participation among seldom heard groups. One-off payments (once ‘ignored’ by the DWP), including vouchers, are now treated as earnings by the DWP. If a participant wishes to donate their fee to a charity and not receive it themselves, the DWP may also consider this as a payment to a third party and still treat it as though it were earnings for the participant.

Reimbursement of genuine expenses incurred in public involvement is now allowable by the DWP and not considered to be earnings, but it is essential these are properly documented. If expenses are included in a single sum for participation, then the full amount will be treated as earnings by the DWP. It is therefore very important for participants who receive benefits that their expenses are reimbursed accurately and clearly separated from any payment for involvement. It should be taken into account that even if a participant wishes not to take a payment, their willingness to participate
Policy on the Engagement of the Public in Research: October 2022
may be considered by the DWP as availability to work and as such may incur a sanction or complete removal of a benefit, such as Employment Support Allowance (ESA), if not handled correctly.

The DWP does acknowledge the importance of people who are deemed to have limited capacity for work undertaking small amounts of work where they are able to, and may allow this in terms of being a paid participant. However, it is essential that the participant in question makes enquiries with their work coach in advance about whether the work to be undertaken is permitted.

The DWP is strict on what it defines as permitted work for people in groups who are deemed as having low capacity for work and potential participants are likely to need support to navigate this. The completion of a Permitted Work Form (PW1)27 will be necessary, and should specify “service user involvement” which is the language the DWP needs to see to understand that the individual is contributing their expertise by experience and being recognised for this. Where appropriate, the form should also make clear that the organisation working with the participant is providing any support needed to enable the participant to take part.