Participant Information Sheet e-patients and carers

1. Project Title

In the Blood: Telling stories in online communications of people with blood cancers

2. Invitation Paragraph

Hello I am asking people on this forum/list/site (will delete as appropriate) to take part in a research project I am carrying out for my PhD. As a fellow e-patient, former nurse, and current communications academic, I am well aware of the huge resource offered to us by networks of support and information available on the internet. Sharing stories online can transform our experience of illness. It also has the potential to transform the way that professional carers and the public in general think about what it means to live with a blood cancer. Whilst medical research continues to push the boundaries of knowledge about the physical aspects of these diseases, your contributions to projects such as this are a valuable resource for furthering knowledge and understanding about living with these cancers. We can, and are, making a real difference to knowledge and opinions about our conditions by communicating online and my study will make sense of this collective resource. Before you decide to participate, please take time to read the following information carefully and discuss it with others if you wish. Ask if anything is unclear or if you would like more information.

3. Purpose of Project Increasingly, people are turning to online communications as a way of sharing information and support about their diseases. In 2007, Dr Tom Ferguson coined the phrase e-patient to describe those of us who are equipped, enabled, empowered and engaged in our health and health care decisions. At the heart of this is the way we tell and swap stories about our experiences of illness online. From working through the first terrifying stage of diagnosis, to becoming well informed about our own diseases, internet communications can play a key role. This project sets out to explore the way that patients and carers use various approaches to storytelling to talk about their diseases in online communities, and asks what we might be able to learn from that to improve communication and better care for patients with blood cancers.

4. Why have I been chosen? Do I have to take part? As a member/contributor of this group/list/forum/blog (delete as appropriate) you have been

selected to take part in this project. I understand completely if you would prefer me not to use your postings or responses as part of my research. Should you wish to be involved however, you will be given this information sheet to keep and be asked to sign a consent form agreeing for me to use your postings, and opinions. If you change your mind after giving consent, thats fine. Just let me know.

5. What will happen to me if I take part? This is a four year project. In the initial stages, I will be looking at the ways people communicate through different forms of story-telling in the group/forum/blog (delete as appropriate). This wont involve any input from yourselves other than the contributions you would normally make, which should not be influenced by the research project. In the second stage of the work, I will be sending out questionnaire surveys, and asking some of you to take part in a short interview (this may be by e-mail, telephone, or online chat), and possibly an online live focus group. Those of you selected for interview/focus group will receive plenty of notice, and the event will be time limited and scheduled to suit your needs. Depending on the geographical location of respondents, there may be an opportunity for face to face interview or focus group, again organized well in advance, and tailored to your needs. If you would like to contribute your thoughts via audio or video files, I would be delighted to build up a multi-media archive of your responses to use on a web-based research document (restricted access). Participation wont cost you anything apart from your time and generosity.

6. What are the possible benefits, disadvantages and risks of participation? As a fellow e-patient, former nurse, and current communications academic, I am well aware of the huge resource offered to us by networks of support and information available on the internet. The way we tell and exchange stories online has the potential to transform our experiences of illness for the better. It also has the potential to transform the way that professional carers and the public in general think about what it means to experience disease. Whilst medical research continues to push the boundaries of knowledge about the physical aspects of the disease, your contributions to projects such as this are a valuable resource for furthering knowledge and understanding about living with these cancers. We can, and are, making a real difference to knowledge and opinions about our diseases.

I appreciate that the information we share can often be of a personal and sensitive nature, and is based on mutual trust. You may rest assured that your identity will remain confidential in all published work, and used solely for the purposes of contacting you (if necessary) during the duration of the project. All measures will be taken to ensure that you cannot be personally identified as a result of this research, and that my presence as a researcher does not impact on your comfort and benefits in using the forum/blog/group.

7. What if something goes wrong? If you are concerned about any aspects of the research process and your part in it, please contact me in the first instance on julia.kennedy@falmouth.ac.uk to discuss your concerns. If you wish to seek independent advice, get in touch with UALs research team: Research Management and Administration, 6th Floor, 272 High Holborn, London WC1V 7EY tel: 020 7514 9389, They will be happy to provide you with independent advice.

8. Will my participation be kept confidential? Yes all possible steps will be taken to protect anonymity. No personal details or identifiers will be used in any publication pertaining to this work. Any personal contact details will be stored securely and destroyed once the project is complete. Any printed copies of online communications will have personal identifiers redacted (blanked out), and will be stored in locked files to which only I have access. Where video or audio files have been solicited and consented to, these will only be used with your consent, and any web-based documentation including such files will have restricted access. It is important that you understand that even though great efforts will be taken to insure anonymity for participants in quoting their online postings in the research report, Internet search engines may be able to pick up original postings if the searcher has access to the online community in question. Due to the group nature of the communication inherent in focus group/group interviews (where they are used), it is important that you acknowledge that confidentiality cannot be guaranteed for information which you might disclose in these settings.

9. What will happen to the results of the research project? The results will be submitted as my PhD thesis, hopefully in 2015, which will potentially lead to publication in book form. I would also anticipate that sections of it will be written up for journal articles and conference papers as the work progresses. It is possible that data collected as part of the PhD project will be used for further research projects. It is my intention that all participants should have access to the results of the work. All participants will be informed of publications, either personally if their contributions are being directly quoted, or by group notification for more general observations.

10. Who is organising and funding the research? This project is instigated by University College Falmouth (who have funded the fees), and University of the Arts London. It is co-supervised in part by Professor Alan Bleakley of Peninsula Medical School in Cornwall. It is not funded or sponsored in any other way.

11. Contact for further information, including questions about the research and participants rights. A. Julia Kennedy, Senior Lecturer, BA (Hons) Journalism, University College Falmouth, Treliever Road, Penryn, Cornwall, TR10 9EZ julia.kennedy@falmouth.ac.uk, 01326 370715 ext 1715 B. RMA Research Student Section, 5th Floor Granary Building, 1 Granary Square, King's Cross, London N1C 4AA researchdegrees@arts.ac.uk (Who can provide independent advice to the participant) 12. Thank you I would like to take this opportunity to thank you personally and on behalf of the instigating institutions for your generosity in giving your time and effort to participate in this research. You should keep a copy of this information sheet in a safe place, alongside a copy of your signed participant consent form if appropriate.