Ethics in participatory health research
Request for case examples: Ethics in participatory research under Covid-19
Case examples requested by 31 July 2021
Susanne Börner, University of Birmingham, UK, s.borner@bham.ac.uk
Petra Plunger, St. Pölten University of Applied Sciences, Austria, pplunger@fhstp.ac.at
Sarah Banks, Durham University, UK, s.j.banks@durham.ac.uk
Invitation
We are inviting people to write short case examples about ethical issues in conducting participatory research during Covid-19 restrictions. By ‘participatory research’ we mean research where people who might usually be regarded as subjects of research play a more active role in at least some aspects of the process (e.g. design, data collection, analysis, dissemination, implementation). We are seeking to include examples from different countries around the world, as well as from working across different groups in terms of age, gender, ethnicity, etc., relating to health and social well-being in the wider sense. The case studies can include (but are not limited to) issues such as: access to communities during Covid-19, trust-building online, issues of privacy and confidentiality in online communications, tackling digital exclusion, deciding whether to conduct research in-person, the impact of wearing masks and physical distancing, assessing new health risks, power dynamics, roles and responsibilities, etc.
The case studies will be placed on the International Collaboration on Participatory Health Research (ICPHR) website. These can be used in training, teaching and in preparing groups to undertake participatory research projects. We may also use them in articles or other publications, with the consent of the case writers. The cases will complement the ICPHR ethical guidelines.
Guidance about writing a case example of an ethical issue, problem or dilemma (500-1000 words)
Case examples usually focus on a particular situation or event that raised an ethical dilemma or problem for the person writing the case example. Case examples are usually written from the author’s perspective and give an account of the issues as she/he saw them and may include reference to their feelings and thoughts. Case examples will usually be anonymous, unless the author particularly wishes to be named and in being named does not compromise the privacy of other people.
We are looking for case examples about real situations, preferably written in the first person (that is, using ‘I’). This should be a short description of a situation, an event or a piece of work - describing the important features. A case example may describe everyday events and actions that an academic researcher, community researcher or other partner or participant encountered in practice that have ethical implications – or it may be a description of a situation that is constructed as problematic – involving a difficult decision, a dilemma, or a situation where ‘mistakes’ were made.
Case examples are always ‘constructed’, that is, the writer decides what features of the situation are relevant and how to put them into words. Writing a good case example is an art – to ensure clarity, interest and sufficient (but not too much) information. There is not one ‘right way’ of writing a case example. We may suggest changes to ensure clarity and will discuss and agree any changes with the writers of case examples.
A short checklist
The format of the case examples should be as follows:
Sending your case
If you have any questions about writing a case, please contact Susanne Börner, Sarah Banks or Petra Plunger. We will be pleased to discuss with you. Once you have drafted a case, please send it to Susanne, Petra and Sarah. They will then look at it and may suggest some changes to make sure it is readable (they will improve the English for people whose first language is not English) and ensure that it gives as much relevant detail as is required for readers from different backgrounds and countries to understand it. They will then send it back for you to approve the changes or give more information in order to upload the final version to the ICPHR website.
Please send your case by 31 July 2021 to: s.borner@bham.ac.uk , pplunger@fhstp.ac.at and s.j.banks@durham.ac.uk
Case examples requested by 31 July 2021
Susanne Börner, University of Birmingham, UK, s.borner@bham.ac.uk
Petra Plunger, St. Pölten University of Applied Sciences, Austria, pplunger@fhstp.ac.at
Sarah Banks, Durham University, UK, s.j.banks@durham.ac.uk
Invitation
We are inviting people to write short case examples about ethical issues in conducting participatory research during Covid-19 restrictions. By ‘participatory research’ we mean research where people who might usually be regarded as subjects of research play a more active role in at least some aspects of the process (e.g. design, data collection, analysis, dissemination, implementation). We are seeking to include examples from different countries around the world, as well as from working across different groups in terms of age, gender, ethnicity, etc., relating to health and social well-being in the wider sense. The case studies can include (but are not limited to) issues such as: access to communities during Covid-19, trust-building online, issues of privacy and confidentiality in online communications, tackling digital exclusion, deciding whether to conduct research in-person, the impact of wearing masks and physical distancing, assessing new health risks, power dynamics, roles and responsibilities, etc.
The case studies will be placed on the International Collaboration on Participatory Health Research (ICPHR) website. These can be used in training, teaching and in preparing groups to undertake participatory research projects. We may also use them in articles or other publications, with the consent of the case writers. The cases will complement the ICPHR ethical guidelines.
Guidance about writing a case example of an ethical issue, problem or dilemma (500-1000 words)
Case examples usually focus on a particular situation or event that raised an ethical dilemma or problem for the person writing the case example. Case examples are usually written from the author’s perspective and give an account of the issues as she/he saw them and may include reference to their feelings and thoughts. Case examples will usually be anonymous, unless the author particularly wishes to be named and in being named does not compromise the privacy of other people.
We are looking for case examples about real situations, preferably written in the first person (that is, using ‘I’). This should be a short description of a situation, an event or a piece of work - describing the important features. A case example may describe everyday events and actions that an academic researcher, community researcher or other partner or participant encountered in practice that have ethical implications – or it may be a description of a situation that is constructed as problematic – involving a difficult decision, a dilemma, or a situation where ‘mistakes’ were made.
Case examples are always ‘constructed’, that is, the writer decides what features of the situation are relevant and how to put them into words. Writing a good case example is an art – to ensure clarity, interest and sufficient (but not too much) information. There is not one ‘right way’ of writing a case example. We may suggest changes to ensure clarity and will discuss and agree any changes with the writers of case examples.
A short checklist
- Does the case example start with a clear introduction that sets out the context? This could include the geographical location (e.g. a city in the USA; a village in India); who it is written by (e.g. an academic researcher, a community researcher); the type of organisation(s) involved (e.g. a not-for-profit organisation working with homeless young people and a university); and any other background information that the reader might find useful.
- Does the case example have a clear description of the situation?
- Does the case example give the reader sufficient information to make it interesting and comprehensible, but not so many details as to confuse the reader?
- Does the case example have a clear storyline (a ‘main thread’)?
- Does the case example have the potential to generate discussion (does it raise challenging ethical questions, is it controversial, open ended)?
The format of the case examples should be as follows:
- Introduction - The writer of the case example should start with a short introduction about the context in which the case takes place – the country, the type of project, any relevant background information.
- The case - The particular event/situation should be described. The content should be mainly descriptive – what happened, including accounts of any thoughts or emotions (‘I was worried …’, ‘I couldn’t decide what to do ….’) and short reflections, if desired (‘I felt I hadn’t handled this well ….’, ‘On reflection this showed we should have been clearer at the start’, ‘This incident showed me how strongly I believe in equality ..’.
- For each case example, we will discuss with the case writer and her/his colleagues the extent to which it should be anonymised, depending on the sensitivity of the information contained and permissions given. In some cases the author of the case may wish to remain anonymous. In other cases the author may be named but the names of people and places changed and any identifying features removed or changed, before being published.
- Length: The case study should be maximum 2 pages in length and should contain an informative title as well as 3-5 keywords.
Sending your case
If you have any questions about writing a case, please contact Susanne Börner, Sarah Banks or Petra Plunger. We will be pleased to discuss with you. Once you have drafted a case, please send it to Susanne, Petra and Sarah. They will then look at it and may suggest some changes to make sure it is readable (they will improve the English for people whose first language is not English) and ensure that it gives as much relevant detail as is required for readers from different backgrounds and countries to understand it. They will then send it back for you to approve the changes or give more information in order to upload the final version to the ICPHR website.
Please send your case by 31 July 2021 to: s.borner@bham.ac.uk , pplunger@fhstp.ac.at and s.j.banks@durham.ac.uk
| ICPHR - Ethics Call for Proposals Document.docx |