A Shared Space and a Space for Sharing: Online Health Forums & Digital Exclusion

19 Nov 2015 |Written by James Richardson


Co-written with Professor Peter Bath, Dr Julie Ellis and Melanie Lovatt

On 10th November, Good Things Foundation and Sheffield University held a roundtable event to discuss initial findings from the research project ‘A Shared Space and a Space for Sharing’, an ongoing study into how and why people choose to use online forums to find and share information that helps them deal with difficult circumstances, including long-term health conditions. The event was designed to find out how Good Things Foundation and its local and national partners could promote the use of online health forums among digitally excluded people, and was attended by 22 representatives from 16 UK online centres from across the country, as well representatives from Big White Wall, Mind, Carers Trust, and Carers UK. This blog is co-authored by Professor Peter Bath, lead investigator for the ‘Space for Sharing’ project and for the research area of life-threatening, terminal and chronic illnesses within the project, Dr. Julie Ellis and Melanie Lovatt, Research Associates on the project, and James Richardson, Research & Innovation Manager at Good Things Foundation.

Peter Bath, Professor of Health Informatics, Dr. Julie Ellis and Melanie Lovatt, Research Associates, University of Sheffield

One way to think about the Web is as a vast shared space that anyone can access through the Internet using a PC, tablet device or smartphone. In the early days of the Web, it was mainly used as a source of information on a wide variety of topics, and people used this for work, leisure, health, finance, education and knowledge. However, web technology has changed incredibly over the last 10-15 years, and new spaces have emerged online that allow people to have more meaningful interactions and exchanges. Chat rooms, discussion forums and social media, such as Twitter and Facebook, and other online media, enable people to communicate and share information, experiences and emotions through the Web.

So, we can think of the Web as both a shared space and as a space in which sharing takes place, and it is from this sharing online that the Web can have real value. This is the inspiration for a large research project, called ‘A Shared Space and a Space for Sharing’, which is studying how people share in online environments and the importance of trust and empathy in this. The project is led by the University of Sheffield, and involves five other Universities, and we are particularly interested in people who share online when they are in extreme circumstances, for example, people experiencing severe floods, civil war, people in extreme emotional distress and people who have been diagnosed with a life-threatening or terminal illness.

In Sheffield, we are focusing on how people who have a life-threatening or terminal illness and their carers share information, experiences and emotions using online discussion forums. We are working closely with Breast Cancer Care and the Motor Neurone Disease (MND) Association to study how people use their online forums and how trust and empathy work. We are analysing the posts from people with breast cancer and MND, and their carers, to learn more about what people share online. We have also had in-depth discussions with people who are using these forums to learn more about why people share online and how trusting other people and gaining empathy from them is important. Although we are in the early stages of looking at this, we are getting some initial ideas about people’s sharing and are using this to focus our analyses.

It is obvious that people with breast cancer and MND are in extreme circumstances. Breast cancer is a life-threatening condition: despite major advances in treatment for the condition over the last 20-30 years, many women and men still die from breast cancer or from secondary cancers that develop later. For people who are diagnosed with MND, there is no cure, and they know that they will die with, and from, the disease. However, it is also clear from the posts we have read by people affected by the conditions that what they are experiencing is extreme, both from the content of their messages, and they way they express their feelings and emotions. However, people can benefit from these forums in a variety of ways.

Some people only use these forums to find out about their condition and other people also share a lot of information about themselves, their condition and their treatment. This is important because it helps people learn about their condition and also because it helps people who share their stories feel that they are giving something in return, something that may help other people. People give advice to each other about how to deal with practical issues and also how to cope emotionally with their illness. Despite going through a very difficult time, sharing with other people can be very positive for individuals and also for the people who are reading the posts.

Finally, while there are clear benefits for people in using these discussion forums, there are also challenges. Some web forums, such as those we are looking at, can be read by anybody accessing the web; this means that people have to be very careful about the information they post about themselves. Information about our health and any illnesses we have can be very sensitive and organisations, such as Breast Cancer Care and the Motor Neurone Disease Association, are very careful about advising forum users not to give out personal details that might identify themselves. Sometimes people post messages that may upset or offend other people and sometimes organisations have to step in and either edit or remove posts or ask people to be careful in what they write. This can be difficult for people and organisations and one thing that we are exploring is the fine line between on the one hand, making sure everyone feels welcome and that it is a positive experience, and on the other hand, ensuring everyone’s voice is heard.

We would like to thank all of the people and organisations that attended the workshop and contributed to the discussion; we look forward to working with these organisations further. We thank Good Things Foundation for working in partnership with us to organise and deliver the workshop.

James Richardson, Research & Innovation Manager, Good Things Foundation

As Peter, Melanie and Julie say, the Space for Sharing project is already providing evidence that using online health forums can be immensely beneficial for people with long-term and terminal illnesses who want to share not just information and advice, but also everyday experiences, hopes and fears, that they might not feel comfortable sharing offline, even with their own families.

The question we wanted to answer at last week’s event was, could online health forums benefit UK online centres learners? Even for people with good digital skills, the use of such forums is not always straightforward. As Peter and his team have found, understanding what behaviour is and is not appropriate has to be learned, and family members may feel themselves sidelined as forum users will only share certain things with online peers. And moderators must tread a fine line between managing forums as a positive space for all users, without seeming to breathe down people's necks.

All of these problems are amplified for those who are just starting their online journey. Trusting others online, and knowing what information is and isn't acceptable or advisable to share, are at the core of appropriate and beneficial use of forums – but these are two areas where new internet users lack skills and confidence, and often choose to hold back.

The good news is that many of the preconditions to encouraging new internet users to use online forums are the same as for other digital health activity, and a huge amount of progress has already been made in this area through our Widening Digital Participation programme, funded by NHS England. Partnerships between local healthcare providers and UK online centres, social prescribing, and combining digital health with wider health activities, helps to get people through the door and remain engaged with learning.

So what’s missing? For a start, online health forums have simply not been a focus of digital health inclusion activity so far. Promoting their use has to happen from the top, and Good Things Foundation will explore how this could happen with the national partners that attended the event, as well as NHS England. The roundtable has certainly given us plenty of ideas. For example, attendees told us that because there are so many forums out there, it’s hard to know where to direct learners - some reported Googling the name of a condition to find forums, but expressed some concern that this might not always bring up the most appropriate resource; clearly there’s a solution involving the curation and promotion of a list of recommended forums, drawn up with the involvement of health charities and healthcare providers. We also discussed the extent to which forums are less intuitive to use than a simple source of information like NHS Choices: new users may require long-term support, and that support could involve more than teaching the technicalities of where to find information and submit a post - reading and sharing information about serious health conditions can be immensely beneficial, but it can also take courage, and be distressing. We need to tell centres what to expect, what support they might need to offer, and how the use of health forums could be embedded within wider programmes that help people to become happier, better informed and more confident about managing their health.

And of course, online learning must continue to be at the core of how we promote online health forums to centres and learners, allowing effective delivery of the necessary skills and knowledge even outside of our funded network. We’ve already started the process through which learning material to support the use of health forums can be built into Learn My Way, which will join the growing suite of health resources we’ve already created. The advice and encouragement of peers seems to have a lot of potential here: video case studies of forum users could help to convince the uncertain to take the plunge, and provide the chance for an open discussion of the issues.

Events like last week’s workshop are rare; we need to make them more common. The combination of national policy influence, front-line expertise and academic insight creates a powerful model for bringing about practical, evidence-based changes to the way excluded and disadvantaged people are engaged and supported to use online tools and resources that will make a real difference to their lives. We look forward to working with national partners and UK online centres to achieve this.

On behalf of Good Things Foundation I’d like to thank everyone who attended the event, and especially the University of Sheffield for hosting. I hope this marks the beginning of a long and productive partnership.

Acknowledgements:

The ‘A Shared Space and A Space for Sharing’ project is one of several projects funded through the EMoTICON network, which is funded through the following cross-council programmes: Partnership for Conflict, Crime and Security Research (led by the Economic and Social Research Council (ESRC)), Connected Communities (led by the Arts & Humanities Research Council (AHRC)), Digital Economy (led by the Engineering and Physical Sciences Research Council (EPSRC)) in partnership with: Defence Science and Technology Laboratory (Dstl), Centre for the Protection of National Infrastructure (CPNI). The workshop was organised as part of the ESRC Festival of Social Science and was funded by the Digital Societies Network, Faculty of Social Sciences, University of Sheffield.