The Knowing as Healing Project is an interdisciplinary project between the University Library, Storying Sheffield in the School of English and the Molecular Gastroenterology Research Group in the Medical School, all at the University of Sheffield. We are collaborating with Rene Meijer, Information Commons Manager at the Uni of Sheffield and Liz Brewster who teaches Medical Humanities at the Uni of Leicester. We are working with people living with a condition called IBS – irritable bowel syndrome and are running study days and workshops to enhance health information literacy. Above you can see some of the other stakeholders in the project, including the IBS Network and patient.co.uk. Rene and Liz can’t be here today so I am presenting on our behalf. About me: I am a Medical Librarian. I teach information literacy to medical students and clinicians. I am also a PhD research student. And I am also an internet informed patient (iip). I have lived with a IBS since I was 13 – nearly 30 years. I became interested in debates around iips because being able to access information on the internet was a key part of my recovery. I wrote about my experiences as part of an MEd in Higher Education. We were considering the power of story and I was working with a surgeon who said to me ‘why not tell the students a story about why information is important’ and I thought about my own story which I will share with you at the end. It explains more about my interest in internet informed patients.
The Storying Sheffield Knowing as Healing project is working with people living with irritable bowel syndrome (IBS). The aim of the project is to record narratives of how it is to live with this condition and to discover if knowing more about IBS can, in itself, be a healing process. We are promoting self management of IBS through the skills of information literacy and are using creative methods, including oral narratives, sketching, collage and diaries, to synthesise biomedical knowledge with first person illness narratives and ultimately to create new knowledge. The project is partnering medical students with people living with IBS to facilitate mutual dialogue and to promote equality in the medical consultation. We are actively encouraging both patients and medical students to search for information online!
Why. Here is one reason. Information literacy is a basic human right and promotes social inclusion
My colleague said “what are you reading now? You are going to scare yourself to death! Why can’t you just trust the doctors?!”That is how we were cultured, to believe that doctors know best. Questioning a doctors opinion was seen to be deviant! So I do remember feeling quite ashamed, not only because I was ashamed to have bowel disease but also to be looking up information about my health. Both of these things felt very stigmatised. And so I tried to do it in secret!
Patients searching for health information is not a new phenomenon. I have worked in libraries for much longer than we have had the Internet and I remember patients coming in and asking to use the print journals. It was part of our training to refer them to the patients library (mainly housing recreational literature) because it was believed that patients wouldn’t understand our medical information! But for me it was a hugely positive step to read and learn more. It was the start of my acceptance of my condition and I learnt that IBS is not a condition full of facts, but is about opinion, acceptance of uncertainty and knowing about ourselves and our patients as individuals
Cyberchondia is quite a derogatory term. People looking up health information have a genuine health concern and it is not helpful to stigmatise them in this way. The internet is a double edged sword. Because it has made information more accessible and it has given patients a voice. But we have seen a huge growth of available info, and this condition. Information obesity. We are consuming more and more information – much of it is of poor quality and potentially damaging for our health
Search cure IBS and you will find 3,360,000 results in 0.18 seconds I would say I am desperate. And when I felt desperate I was keen to find that miracle cure! But a lot of the information is contradictory, confusing or just people trying to make a quick profit!
So perhaps we should enable patients to understand medical research, which is what I tried to do. But still the information can be contradictory!
Maybe the answer is to create sites which individualise treatments. Patient.co.uk have created an IBS iPhone app to track symptoms and to keep a food and mood diary
And the IBS network have a self care plan
And there are digests which synthesise medical research and present it in plain English
This is the Information Standard logo which we encourage participants to look out for
But not every good site has the standard This is my favourite IBS site – no standard So we say dont exclude information found from a Google search but do think critically about it, here is a site which I trust. It is run by a patient, not a medic but it appraises well
NOTE: Remove image before sharing online All this can leave us all feeling quite confused. To this we say – good - now you’re starting to understand IBS! Because to understand IBS, like many other chronic illnesses, requires a huge shift in mindset. From only being comfortable with certainty towards understanding medical complexity and being able to say “ We don’t know” And being able to understand differences and people as individuals
We will tell you more about the study days. We have run two study days so far. The first day 8 medical students and 10 IBS participants attended. And the second one 10 and 10 plus 1 and 1 returning from last time and acting as facilitators The room we use was chosen for its collaborative environment. The IC was designed to facilitate inquiry based learning.
Timeline created by a 4 th year Medical Student
Timeline created by an IBS participant
Timeline collage created by an IBS participant
Because medical research is only meaningful if it can be integrated with a patient’s unique story Which can sometimes get forgotten when we try to create controlled trials Because people are different and have differences which can’t be controlled So our research is not focused on clinical trials, although we are collaborating with researchers who are undertaking IBS trials. We are using the power of story To embrace our individuality and to come to understand and integrate the differences
Emerging conclusions Chronic illnesses are better managed through an integration of the patient’s experience, the experience of others (medics and other patients) and the findings of research evidence including, but not limited to, clinical trials. The hierarchical ranking of research evidence does not suit the management of long term conditions Patients living with chronic health conditions can be empowered through health information literacy although some patients do say that knowing more is not always helpful Mutual learning and dialogue between medical students and patients could promote equality in medical consultations The sense of community and collaboration provided by libraries and librarians can be beneficial for people living with long term conditions
Grant & Brewster - Creative pedagogies and health information literacy: the Storying Sheffield Knowing as Healing Project
LILAC March 2013Creative pedagogies and health informationliteracy: the Storying Sheffield Knowing asHealing ProjectVicky Grant (presenting) and Rene MeijerUniversity of SheffieldLiz BrewsterUniversity of LeicesterAn Arts Enterprise fundedproject
Alexandria proclamation“Information Literacy lies at the core of lifelong learning. It empowers people in all walks of life to seek, evaluate, use and create information effectively to achieve their personal, social, occupational and educational goals. It is a basic human right in a digital world and promotes social inclusion of all nations”http://www.ifla.org/publications/beacons-of-the-information-society-the-alexandria-proclamation-on-informati
Internet informed patients:cyberchondriacs or activepartners?
Cyberchondria“refers to the unfounded escalation of concerns about common symptomology based on review of search results and literature online”Wikipedia
Information obesity. An abundance of information coupled with aloss of quality, WHITWORTH, A. 2008. I rm a tio n o be s ity , nfoOxford, Chandos.
“ Every month, month after month,we get more hits forthan any other condition”Dr Tim Kenny, founder ofpatient.co.uk
“ Every month, month after month,we get more hits forIBSthan any other condition”Dr Tim Kenny, founder ofpatient.co.uk
Health information prescriptions?• Should we have a PIL for every ill?(patient information leaflet)• Or be doing more to make people HIL?(health information literate)
Health Information LiteracyEvents10,00 Welcome 13.15 Rotating sessions10.15 Ice breaker 1. Post it note exercises Where do you10.30 Talk by Dr Tim Kenny of look for health information/ How do patient.co.uk you decide if the information is reliable?11.00 Short films 2. Search exercise. Including demo the of11.15 Coffee and discussion of films patient.co.uk IBS app.11.45 Discuss information brought by 3. Storytelling. Create short stories participants telling your IBS story12.30 Lunch 14.45 Tea 15.00 Story sharing 15.45 Evaluation and close
“I spent a lot of time searching on the internet ... but you can be terrified ... like what if it gets worse ... Some of the GPs can be resentful and will say ‘oh I don’t know about that’ ...” [participant infers that GPs don’t agree with internet informed patients] “But I think that internet informed patients are a good thing because it [IBS] is an illness with so many different symptoms ... Learning from other people is good ... so its just filtering out the right things”
Feedback“Now I have more an energy and a motivation to win with IBS” ”I feel a lot more confident talking about my IBS after today, and dont feel quite so despondent about it, so thank you! ”“patients do want to know more and sometimes do know more than the doctor.”“the medical aspects/jargon are hard to relate to when you’re not a medical student.”The best thing “hearing other people’s stories” “don’t feel so isolated”The worst thing “initially getting over my embarrassment of talking about my symptoms in front of other people”
Next steps• To enhance • To collaborate with inclusion by a local artist and working out in the to plan an city exhibition
VideoHealth information obesity: the new epidemic?
AcknowledgementsWith grateful thanks toThe project supervisors: Prof Brendan Stone and Dr Bernard CorfeThe University of Sheffield Faculty of Arts & Humanities for Arts Enterprise fundingThe University of Sheffield Librarypatient.co.uk and the IBS NetworkThe Medical Students and IBS Participants who have given their time and their stories to the project. Thank you