Research

Patients with lived experience as co-researchers:

This is an introduction to what it means being involved in research as a patient/carer. It also includes links to some other resources that would be helpful to look at if you are thinking of getting involved in research and using your valuable lived experience to influence how the research is carried out, written up, described to participants (lay information sheets) etc. You might become involved in any aspect of research as a patient/carer. Your lived experience is invaluable and you don’t need to have any previous experience of research. 

What is involvement in research by patients/carers?

Involvement in research is different from participation (where patients are the subject of the research study) and engagement (where knowledge and information about research is shared with the public). INVOLVE, a national UK NHS advisory group that supports public involvement in health and social care research defines involvement as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them”. Its document “Starting Out is a useful resource for patient/carers who are thinking of getting involved in research, ( https://www.invo.org.uk/wp-content/uploads/2018/01/Induction-public-v3.pdf).

It is important that involvement of patients/carers in research is carried out to an appropriate standard so that there is meaningful impact on the research from the patient/carer involvement. Six standards of good practice are set out in the UK NIHR National Standards for Public Involvement  (https://www.invo.org.uk/wp-content/uploads/2018/06/Public_Involvement_Standards_v1.pdf) and are shown in Box 1. The research you are involved in will be evaluated using these standards, among other things, to inform the evaluation. This will be done to make sure you are being treated properly in terms of your involvement in research and that your involvement is being valued and has impact. 

Box 1 Standards for Public involvement 

Standard 1: INCLUSIVE OPPORTUNITIES 

We offer public involvement opportunities that are accessible and that reach people and groups according to research needs. 

Standard 2: WORKING TOGETHER 

We work together in a way that values all contributions, and that builds and sustains mutually respectful and productive relationships. 

Standard 3: SUPPORT & LEARNING

We offer and promote support and learning that builds confidence and skills for public involvement in research. 

Standard 4: COMMUNICATIONS 

We use plain language for timely, two way and targeted communications, as part of involvement plans and activities. 

Standard 5: IMPACT 

To drive improvement, we capture and share the difference that public involvement makes to research. 

Standard 6: GOVERNANCE 

We involve the public in our governance and leadership so that our decisions promote and protect the public interest. 

From; https://www.invo.org.uk/wp-content/uploads/2018/06/Public_Involvement_Standards_v1.pdf

Why should you get involved?

Patients/carers and public may choose to get involved in research both for their own benefit and for the wider benefit of society and often choose to be involved for a mixture of reasons. Individual benefit may be focussed around understanding your illness/care experience better, getting information about health, getting intellectual stimulation or be as simple as having something to do because you are bored and for some, reimbursement may be attractive. Involvement for the wider benefit of society may centre on giving something back in return for your care or that of a friend or relative, contributing to better quality research, feeling that the patient’s perspective is included in research being undertaken, and wanting to contribute to better knowledge about, and care for, a specific condition or group of conditions. Involvement should not include an expectation of better individual health care or be seen as an opportunity to address a concern or upset about a patient’s individual care. In our case research will be focussed on palliative care but it is anticipated that the research will cover a wide range of palliative care perspectives. Research may be focussed on a particular condition and palliative care for that condition or a particular aspect of palliative care as applicable to a group of illnesses or indeed any illness.

How can you be involved?

Patients/carers/public can be involved in all stages of the research process right through from deciding what areas are important to research to sharing the final research study results by publication or presentation at meetings. Individuals will bring different skills to the table with many having no research experience either as a subject or researcher but everyone will have significant lived experience of the area being researched. Patients are most commonly involved by attending meetings to provide a patient/carer/public view or by  commenting on documents which often includes patient information leaflets or lay summaries of research. It is important that there are a range of opportunities for involvement in research. Not everyone is happy reading and commenting on documentation but would be happy to contribute verbally either at a meeting or in an individual interview. Similarly, some patients will be happy to present information about the research while others would feel very uncomfortable doing this. healthtalk.org has a series of videos with patients discussing their involvement in research along with written information that provides a helpful overview of what involvement in research as a patient/carer means. https://healthtalk.org/patient-and-public-involvement-research/overview. This includes advice on how to overcome the difficulties/barriers to involvement in research such as intimidating complex application processes or feeling excluded in a room full of academics. `it is anticipated that because the research will be global health research focussed in LMICs that the majority of “meetings” will be virtual on line meetings using zoom or something similar.

Getting involved as a co-researcher through WHPCA

WHPCA will keep a register of patients/carers with an individual profile written by each patient/carer summarising:

• their condition and experience of palliative care
• what special provision, if any, needs to be made to take account of their care needs
• what their experience of research, if any, is (none is necessary)
• why they want to be involved in research
• how they would prefer to be involved or if they don’t mind or don’t know
• how much time they have available
• what expenses they might need reimbursing e.g. data bundle to attend meeting on line from their own country
• how they would prefer to be contacted

It is anticipated that sometimes researchers will approach individuals to participate in research that is particularly relevant to them because it is focussed on their condition or context but that more commonly researchers will put out a message “advertising” an opportunity to participate in a research project focussing on palliative care on the project site and ask interested patients/carers to contact the researcher to express their interest. 

WHPCA will keep a record of individual involvement in research and evaluate research experiences to ensure good practice in patient/carer involvement. The evaluation will be informed by the six standards set out in Box 1. 

Overview of getting involved in research as a patient/carer

https://healthtalk.org/patient-and-public-involvement-research/overview.

If you have any queries/questions about getting involved please email Helena Davies @ hdavies@thewhpca.org