Ethics in participatory health research
International Collaboration on Participatory Health Research & Ethics in Community-based Participatory Research Group
Ethics in participatory research for health and social well-being
Request for case examples
Sarah Banks, Durham University, UK, s.j.banks@durham.ac.uk
Mary Brydon-Miller, University of Cincinnati, USA, BRYDONML@ucmail.uc.edu
Invitation
We are inviting people to write short case examples about ethical issues in participatory research linked to health and social well-being for a book and two websites. 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 research process (e.g. design, data collection, analysis, dissemination, implementation). All case examples received, if suitable, will be placed on one of the websites. A selection of cases will be chosen for the book (we will be looking for a balance of different types of issues from different countries)
Book
We are planning an edited book on ethics in participatory research for health and social well-being, and would like to include some case examples in the book. The book will be edited by Sarah Banks (Durham University, UK) and Mary Brydon-Miller (University of Cincinnati, USA). We have an indication of interest from The Policy Press (located in Bristol, UK) and will develop a proposal once we have offers of sufficient case examples to plan the chapters. We are seeking a spread of examples from different countries around the world.
Websites
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. In response to some case examples, we may ask other people to write commentaries. These will be shown to the author of the case before publication.
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. Sarah Banks 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.
The format of the case examples should be as follows:
Sending your case
If you have any questions about writing a case, please contact Sarah Banks or Mary Brydon-Miller; they will be pleased to discuss with you. Once you have drafted a case, please send it to Sarah and Mary. 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. Then we will upload the case to one of the websites and let you know if we wish to consider it for the book.
Please send your case by 30 June 2016 to both: s.j.banks@durham.ac.uk and BRYDONML@ucmail.uc.edu
Ethics in participatory research for health and social well-being
Request for case examples
Sarah Banks, Durham University, UK, s.j.banks@durham.ac.uk
Mary Brydon-Miller, University of Cincinnati, USA, BRYDONML@ucmail.uc.edu
Invitation
We are inviting people to write short case examples about ethical issues in participatory research linked to health and social well-being for a book and two websites. 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 research process (e.g. design, data collection, analysis, dissemination, implementation). All case examples received, if suitable, will be placed on one of the websites. A selection of cases will be chosen for the book (we will be looking for a balance of different types of issues from different countries)
Book
We are planning an edited book on ethics in participatory research for health and social well-being, and would like to include some case examples in the book. The book will be edited by Sarah Banks (Durham University, UK) and Mary Brydon-Miller (University of Cincinnati, USA). We have an indication of interest from The Policy Press (located in Bristol, UK) and will develop a proposal once we have offers of sufficient case examples to plan the chapters. We are seeking a spread of examples from different countries around the world.
Websites
- We are also seeking case examples to place 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. The cases will complement the ICPHR ethical guidelines.
- In addition, we would also like to put cases in the collection on the webpages of the National Coordinating Centre for Public Engagement (a UK organisation). We have some cases on these webpages already, but are now seeking to expand the range – including cases from a range of different countries and contexts.
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. In response to some case examples, we may ask other people to write commentaries. These will be shown to the author of the case before publication.
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. Sarah Banks 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 story-line (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 ..’. But don’t do too much analysis – as that is the job of the commentator. Commentators may offer theoretical or analytical reflections on the largely descriptive case examples.
- For each case example, Sarah Banks or Mary Brydon-Miller and the case writer and her/his colleagues will discuss 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.
Sending your case
If you have any questions about writing a case, please contact Sarah Banks or Mary Brydon-Miller; they will be pleased to discuss with you. Once you have drafted a case, please send it to Sarah and Mary. 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. Then we will upload the case to one of the websites and let you know if we wish to consider it for the book.
Please send your case by 30 June 2016 to both: s.j.banks@durham.ac.uk and BRYDONML@ucmail.uc.edu