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Patients assessing students' assignments; Making the patient experience real
Nurse Education Today 32 (2012) 139–145
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Patients assessing students' assignments; Making the patient experience real Jane Munro a,⁎, Fiona Whyte a, 1, Jim Stewart b, Andrew Letters c a b c
Nursing and Healthcare, University of Glasgow, G12 8QQ, UK Crohn's and Colitis UK Clyde Group, UK Nursing and Healthcare, University of Glasgow, G12 8QQ, UK
a r t i c l e
i n f o
Article history: Accepted 4 November 2011 Keywords: Patient experience Patient engagement Enquiry based learning Undergraduate nurse education
s u m m a r y The care of patients with inflammatory bowel disease (IBD) frequently falls short of the highest standards. This is noted in several publications, including national standards, despite nursing students being taught the importance of listening to and understanding patients. Teaching staff at the University of Glasgow primarily responsible for teaching third year undergraduate nursing students undertook a radical rethink of the planning, delivery and assessment of lectures on IBD. The subject had previously been delivered in a modified lecture format. Although the topic could be included in the end-of-year exams, there was little evidence to show whether this traditional teaching method had any effect on students' clinical practice. In a novel approach to learning and assessment, students were invited to research and produce an information leaflet for newly diagnosed patients with IBD. The leaflets were then assessed and grades awarded by an expert panel of patients and carers. Such enquiry based learning (EBL) intended to demonstrate in practice, the key role patients can play in both undergraduate nurse education and in service planning and delivery in the National Health Service (NHS). The panel found the exercise both interesting and insightful, while the students reported being invigorated and felt the expert assessment meant they were forced to achieve a higher level of work. © 2011 Elsevier Ltd. All rights reserved.
Introduction Up to 55 students undertake the third year of the Bachelor of Nursing undergraduate degree programme at the University of Glasgow. Originally, students were taught the theory of nursing care for patients with Inflammatory Bowel Disease (IBD) through a series of traditional instructional technique lectures. At the end of the year, this knowledge could be tested in the written unseen summative examination which contributed to the final degree award. The treatment and care of patients with IBD has been the subject of considerable concern highlighted by the publication of national standards (Inflammatory Bowel Disease Standards Group, 2009). Simultaneously, the National Health Service (NHS) has placed increasing importance on involving patients in their care and planning health services. In response to these findings an internal departmental review of the IBD subject content highlighted the need for changes in approaches to both learning and assessment. The introduction of enquiry based learning (EBL) was an attempt to increase student awareness of the nursing
⁎ Corresponding author. Fax: + 44 141 330 5612. E-mail addresses: [email protected] (J. Munro), [email protected] (F. Whyte), [email protected] (J. Stewart), [email protected] (A. Letters). 1 Tel.: + 44 7880730292. 0260-6917/$ – see front matter © 2011 Elsevier Ltd. All rights reserved. doi:10.1016/j.nedt.2011.11.002
care patients with IBD required and to highlight the pivotal role patients play in informing nursing practice.
Background Inflammatory Bowel Disease National Audit Results; Shortfall in Service and Care Ulcerative colitis and Crohn's Disease are the main conditions described as IBD. They are lifelong conditions most commonly presenting in patients' teenage years and in their twenties. As many as 1.4 million people in the United States and 2.2 million in Europe suffer from these diseases (Edward, 2004). The key effects are inflammation and ulceration in the colon and rectum (ulcerative colitis) or anywhere in the gastrointestinal tract (Crohn's Disease). Both conditions can produce symptoms of urgency, diarrhoea, pain, profound fatigue and anaemia, with, for some patients, associated inflammation of the joints, skin, liver or eyes. In addition, malnutrition and weight loss are common. It is important to note that IBD follows an unpredictable relapsing and remitting course consequently there is significant variation in the pattern and complexity of the symptoms between different patients and in individuals over time. Education, working, social and family life are all disrupted by the unpredictable occurrence of flare-ups and symptoms may severely affect selfesteem and social functioning, particularly among the young and
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newly-diagnosed (Inflammatory Bowel Disease Standards Group, 2009). It is therefore clear that patients with IBD need complex and comprehensive nursing care which can only be achieved with an understanding of the long-term debilitating effects of the condition. However, a National Audit of Adult Inflammatory Bowel Disease Services and Care (Royal College of Physicians, 2006) revealed unacceptable variation in several important aspects of care. For example, only 52% of patients admitted with Crohn's Disease were weighed and 37% seen by a dietician. In response to these shortcomings, Standards for Inflammatory Bowel Disease Services were published (Table 1) to help ensure patients with IBD received “safe, effective and of consistently high standards of care”. From Instructional Technique to Enquiry Based Learning (EBL): The Logical Choice to Capture Patient and Carer Experiences The original instructional lecture format for this subject matter had been deemed acceptable because it allowed a large amount of information to be given to students without the need for a limit on class numbers. It had been a good medium for teaching facts about IBD and it was relatively straightforward to objectively measure what students had learned using the University of Glasgow's Code of Assessment Schedule A (2011). However, this format was not considered ideal to help students make the necessary transition from theoretical knowledge to practical application. The impact of lectures on the learner is mainly aural and it is not considered to be particularly effective for developing the higher-order thinking skills necessary for professional practice (Kern et al., 2010). Students were neither being placed at the centre of learning nor being given the opportunity to engage actively with the topic. It became obvious students needed a greater understanding of how IBD affects both patients and carers in order to enhance their care and determine what, in the patients' opinion, was the most beneficial kind of information and in what format they preferred. To attain these learning outcomes EBL was employed for the first time in this subject area. Literature Pertaining to Enquiry Based Learning Enquiry based learning is an approach which has been used routinely for some time in undergraduate medical education in various medical schools both in the UK and in North America; up until very recently this approach has been the predominant method of enquiry for students studying medicine from year one at the University of Glasgow. For nursing students this learning method is not one which has been used routinely, but rather one which is used, if the subject under investigation is considered appropriate. It tends to be used more frequently in senior years of the course where there is a definite shift in the curriculum towards student-centred education (Milligan, 1999). End of year evaluations from students completing an ordinary degree at third year and those with honours at fourth year concur with Collivers's findings in that it is a motivating and enjoyable way to learn (Colliver, 2000). In addition, it is hoped that this
Table 1 Service standards for the healthcare of people who have Inflammatory Bowel Disease (IBD). ● ● ● ● ● ●
Standard A — High quality clinical care Standard B — Local delivery of care Standard C — Maintaining a patient-centred service Standard D — Patient education and support Standard E — Information technology and audit Standard F — Evidence-based practice and research
learning method provides the students with enhanced skills for working as registered nurses but as yet there is no empirical evidence to prove or disprove this theory. Kveven et al. (2007) believe this method of learning encourages life long learners as the students are empowered to become active participants in their education due to their ability to make observations and to explore topics where they have to communicate with others rather than merely follow directions. These North American researchers have examined EBL using expert partners in the fields of science, history and food safety. Pine and Aschbacher (2006) agree with these beliefs and go on to add that EBL requires the learners to do more than merely internalise a body of existing knowledge and to ask and test their own questions. Enquiry based learning has helped students reach a point where they are not simply investigating questions posed by others, but forming their own research topics and converting that research into knowledge that is appropriate for a practice-based discipline. Furthermore, Hutchings (cited in Sambell, 2011) proposes that enquiry based learning does more than inspire students to learn for themselves, but in addition, brings a real research-orientated approach to the subject. It has also been observed that students are more enthusiastic and engaged with a subject when learning is perceived to be relevant to their needs (Edelson et al., 1999). Evidence based learning covers a spectrum of approaches which are presented in Table 2. Two further factors supported this choice of a research-based EBL approach. (1) A key component of The Expert Patient Programme (NHS Choices, 2010) is developing effective partnerships with healthcare providers. This suggests nurses need to be involved with: ∙ providing greater access to services, e.g. by supplying information on services appropriate to the patient ∙ keeping up to date with the latest developments and treatment options for chronic diseases ∙ empowering the patients to allow them to make the best choices for their treatment and lifestyle ∙ listening to feedback from the patient and being an active partner in developing care to suit their needs (2) Standard D of the Standards for Inflammatory Bowel Disease specifically ‘Patient Education and Support’ which places a similar emphasis on information provision and education (Appendix 1) The relevant academic staff, in conjunction with the head of the school, gave due pedagogical consideration about the introduction of EBL particularly as it involved working in such close partnership with patient representatives. This proactive strategy helped establish effective working relationships and a better appreciation of one another's remit in the process. Furthermore, from the outset, it ensured the process was closely aligned with the module learning outcomes specifically those relating to the students' ability to 1. integrate and use information from a variety of disciplines to demonstrate an holistic understanding of the needs of the individual patient 2. discuss issues of importance to the service user in the provision of health care for patients in hospital and primary health care settings In contrast to the passive approach of learning through lectures and assessment through examinations, students were asked to design an information leaflet for newly diagnosed patients. These would be assessed by an ‘expert ’ panel of patients and carers, a new departure as assessment had previously been undertaken by teaching staff. The intention was to ensure the nursing knowledge was generated from the patients ' experience.
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Table 2 Methods of enquiry based learning (EBL).
Patient and Carer Engagement in the Enquiry Based Learning and Assessment Process
for attainment of intended learning outcomes), (2011), already familiar to students for guidance in order to award the final grades.
An extensive literature review of service user and carer involvement in healthcare education by Morgan and Jones (2009) notes that involvement has followed an increasing focus on patient-centred services within the health service. Their findings demonstrate both students and service users benefit from involvement in health care programmes and corroborates with similar studies in the mental health field where for example Rush and Barker (2006) noted that all students reported a positive impact on their learning and service user involvement improved their enquiry based learning experience. Furthermore McAndrew and Samociuk (2003) found that users felt they were in the dominant position as they could offer real life experience. In terms of application to nursing practice, it is however worthwhile noting that there is limited evidence to suggest that service user involvement actually leads to changes in behaviour in practice or significantly benefits the service user receiving care (Morgan and Jones, 2009). This was noted and discussed when preparing students and service users for their role in order to help manage expectations and give the opportunity to consider mechanisms for improving practice in the future.
Students Involved in the Assignment As 52 students undertook this assignment it was obviously impossible to describe or discuss in any detail all the student's efforts. It was also felt unfair to compare and contrast a few pieces of work in this publication and it was therefore decided, for the purposes of this paper, to use one student's work as an exemplar. However, it is worth mentioning at this point, that all 52 students formally evaluated the experience positively and because of the success of the assignment it has been decided to further develop this form of patient informed learning and in future years the assignment will include a full reflective cycle, where following feedback from the expert patients, the students will be allowed to reflect and improve their leaflet.
Phase 1. The Student Brief Students were given the new task of designing a patient information leaflet that would be formatively assessed. Their work was intended to be suitable for a newly diagnosed patient with either condition and was to include information and education on the aetiology, symptoms, prognosis, treatment and support. Students were asked to consider presentation, language and graphics that would be appropriate to the patient group. Students were advised that, unlike in previous years, academic staff would not be assessing their work but a panel of ‘expert’ patients from the local branch of Crohn's and Colitis UK i.e. Clyde branch overseen and supported by the course academic staff. This development would align the anticipated assessment method with the current University of Glasgow Learning and Teaching Strategy (2011) which among other objectives, includes ‘Excellence in Learning and Teaching’ to ensure help staff continually develop assessment and feedback methods effective in promoting student learning. Panel members would use the University of Glasgow 22 point scale, Code of Assessment Schedule A, (a matrix of verbal descriptors
Phase 2. Establishing the ‘Expert Patient’ and Carer Assessment Panel Following a thorough briefing with staff and discussion with other committee members, the Chairman of the Crohn's and Colitis UK Clyde branch agreed to establish an ‘expert’ panel which would have the responsibility of assessing the submitted assignments. Crohn's and Colitis UK brings together people of all ages who have ulcerative colitis or Crohn's Disease, along with their families and the health professionals involved in their care. The six-strong panel was drawn from the Crohn's and Colitis UK Clyde group and both male and female members had a wide range of life experience and years of living with the disease (Table 3). The students' work was posted to the Chairman and a date agreed to discuss their findings. The panel was referred to the university code of assessment described above which was routinely used for formative and summative assessment across the university. Approval for the local branch involvement was sought from the Crohn's and Colitis UK head office and costs incurred for fuel, parking and postage were volunteered by the organisation. Ethical Considerations User involvement in any form of participatory activity raises many ethical issues. It was acknowledged that as the course of this chronic disease is often unpredictable some participants might be unable to fulfil the commitment due to ill health or frequent hospital appointments. Due consideration was given to the four pillars of health care
Insoluble fibre; excellent! Affects everyone differently—excellent My mum's favourite as it's not scare mongering and she liked its personal style Good nutritional treatment advice Surgery results in a colostomy not an ileostomy Again stoma mentioned too soon, not required in newly diagnosed patients. Too alarmist Symptoms should include frequency of stools It would be a stoma not an external pouch Steroids not Cohn's causes bone thinning No links on advice on where to go for more info Removing the whole colon is not the only surgical treatment available High fibre diet is NOT recommended for Cohn's Disease; be wary of saying that, even if having no symptoms. Should say something like “only if you can tolerate them” Not much about diet or treatment though Too medical Pity no diagrams Presentation, layout, graphics are basic Does not explain medical terms It is a disease, not a ‘disorder’ Too basic, not a lot of effort has gone into this Impersonal
Table 3 Details of the ‘expert patient and carer panel’ members. Patient 1
Patient 2
Patient 3 Carer 1 Carer 2 Carer 3
This patient was one of the ‘much younger’ members of Crohn's and Colitis UK Clyde Group with Crohn's disease who had spent the majority of the previous 9 months in hospital A volunteer for Crohn's and Colitis UK for many years and who was considered by other members to be the person with the best knowledge of the diseases in the Group The wife of the Chairman who has had ulcerative colitis for about 10 years or so The mother of Patient 1 The best friend of Patient 1 The Chairman of the Crohn's and Colitis UK west of Scotland branch
ethics i.e. autonomy, beneficence, non maleficence and justice (Beauchamp and Childress, 2001) specifically that participants could withdraw at any time without prejudice. Interestingly the Chairman also believed local members of Crohn's and Colitis UK would benefit by embarking on an innovative project with the local university and promote the proactive activities of the local branch at a national level. Furthermore he considered it an excellent opportunity to increase nurses' understanding of IBD and what it is like to live with them with the eventual outcome of enhancing their nursing care helping to meet Standard D of the Standards for Inflammatory Bowel Disease relating to patient education and support. It was also agreed at the end of the project that the collaboration would be widely publicised in the organisation's national newsletter.
Fantastic, clear, concise Clear concise reading
No links or referencing Layout a tad confusing Too short Negative
Language Length
Positive
In addition to the University of Glasgow Code of Assessment Schedule A (2011), the Chairman also designed two marking schedules or ‘marking frames’. All assignments were made anonymous using the students' university registration numbers. Marking Frame 1 was designed to assess whether or not the student had responded to the brief in their leaflet i.e. ‘to design a patient information leaflet on either Crohn's/Colitis for a patient who has been recently diagnosed outlining the possible causes, treatments, prognosis and support available. The schedule was presented in a grid format with the criteria being assessed against the students' university registration number and scored out of a possible 5 (1 meeting the criteria the least, 5 the most). Using this frame was a matter of ‘had the item been covered’ then ‘how well’. Marking Frame 2 was more about issues of judgement that the panel as patients and carers considered important e.g. length, language, interest and helpfulness. No guidelines were laid down on how to judge this and space was made available for panel members to add comments if they wished. The Chairman noted that ‘unlike other Crohn's and Colitis UK Clyde group activity, the assessment process was not done by committee i.e. sitting together discussing the assignments’. This allowed individuals the opportunity to draw their own conclusions and document these in their own time and way without the restrictions of a committee structure. Furthermore, because of their illness and the unpredictable nature of the condition, members were often unable to attend meetings therefore each panel member either handdelivered or posted the assignments to the next. The Chairman started the process by ‘marking’ each of the leaflets against both marking frames without consulting anyone else. The coursework was then passed to the next panel member with his completed frames but no detailed comments. This process continued until all panel members had the opportunity to grade them and make comments. Comments were organised under the themes of length, language, interest and helpfulness (Table 4). Each reviewer then gave an overall grade by matching the individual student's performance for both marking frames against the
Table 4 Extract from expert panel comments on patient information leaflets.
Phase 3. Patient and Carer Generated Code of Assessment; Methodology and Data Analysis
Does not go into enough detail at all American terms used. Little mistakes like this make it impersonal for reader Doesn't explain some medical terms e.g. mucosa, palpitation It is indeed a scary read
Helpfulness/accuracy Interest
Good headings, information accurate
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Really liked the section on surgery Well thought out, well explained and non-alarmist Very good. Info great, presentation okay
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University of Glasgow Code of Assessment Schedule A (2011). All assessors stated which assignment they preferred. All the marking frames were then returned to the Chairman who collated the responses and drew up a shortlist of about 10 student registration numbers and related information leaflets. He then passed these to his wife, who has had ulcerative colitis for about 10 years. She then went through the shortlist adding her comments and views. Finally, the Chairman pulled all the information together and found there was unanimity among the assessors identifying the winner and two ‘runners-up’. Limitations in the assessment process are acknowledged. Marking was not carried out entirely independently due to practical and time restrictions i.e. patients were participating in their own time, often between hospital appointments and in general did not live in close proximity to one another. This limitation was discussed from the outset; however, the Chairman gave strong reassurance that knowing the members of the branch individually meant that the panel members were chosen as ‘expert patients’ whose opinions would be frank, objective and honest based on personal experiences of their illness. The Chairman stated that each of the panel members he noted brought something unique to the exercise. Phase 4. Feedback Mechanisms Employed The Chairman met the course leader and head of school to discuss and approve their findings and return the marking frames for future reference. The winning student was notified and written comments were returned to all students as part of the feedback. Comments about the winning leaflet (Diagram 1) included: ∙ ∙ ∙ ∙
Like the first page, presentation and graphics are great Like the title on the first page Very good statistics Loved the thought bubbles/questions
∙ ∙ ∙ ∙
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Excellent referencing/links Excellent Tonnes of effort put in My favourite
Student Feedback — Retrieval and Analysis Similar to the Chairman, the course leader would have preferred to meet with the student face to face however this was not possible due to clinical commitments. The course leader therefore met him briefly to agree to an acceptable feedback mechanism. For practical purposes it was agreed the student would e-mail the course leader his thoughts under four headings; • • • •
Perceived challenges Organisation and management of work Reflection and changes to clinical practice Thoughts on EBL as a learning technique
The student was initially reluctant to participate due to other commitments and lack of confidence however after additional reassurance submitted a detailed and insightful account. The student was thanked for his participation. The Student Experience The student given the highest grade then gave his reflections on having his work judged by patients and carers instead of academic staff. He noted that “early on it became clear to me that this would not be a routine assessment of written work. The people assessing the leaflet were not likely to be of a medical/nursing background, had suffered from one of these conditions and would probably have read a lot of leaflets pertaining to the subject”.
Diagram 1. Extract from student information leaflet.
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The student felt this approach to assessment “piled on the pressure” to get everything exactly right with no room for mistakes. The student foresaw two main challenges: Presentation: if a leaflet looked boring the chances are that he wouldn't read it and therefore he couldn't expect others to read it either. Language: the student remembered being told that information for patients should be aimed at upper primary school ages and he anticipated difficulties in writing about a disease like Crohn's or ulcerative colitis for an adult reader using simplistic terms. The student researched information for the leaflet using patient information websites and NHS publications to give him an indication of the level of language used in a leaflet for the public. He also found websites useful for identifying information needed for someone newly diagnosed with a condition, with topics such as symptoms and available treatments. The student then set about creating a leaflet, ordering the information in a logical way. It was at this point he had the insight to realise that the student was still approaching the task the “wrong way around” in that the student was still thinking as a health professional when really the student needed to look at this through the eyes of a patient. It was a condition the student had known little about before starting so he needed to think, for example, “How would I feel if I had just been diagnosed with Crohn'sand what would I need to know?” The student considers that this thought process allowed him to write the information in a way anyone could understand while getting across key messages he thought would be important. Once he had the information he needed he fitted it into a leaflet and attempted to make it look like an interesting read. On reflection, the student noted that having originally felt lost at being asked to design a leaflet that would be judged by the public, the student had found a strategy to cope that worked personally. The student came to realise the benefits this exercise had offered him as a student nurse including the ability to give information that needed to be easily understood by the patient. The student also noted that this exercise acted as a reminder about the importance of not talking at a professional level, using “all the jargon” that to health care professionals seem simple while forgetting that in hospital, the patient already vulnerable and in an alien environment, is unlikely to understand. The student noted: “this crucial lesson will hopefully stay with me and in doing soimprove my ability to nurse and include the patient in their care”. When the student was told he had achieved the highest mark, he expressed surprise that his work had impressed the judges from NACC so much. In his own words, he had “started in the dark, not knowing in which direction I was supposed to go, and that to find I had taken the right path was reassuring.” Not only had he received the top mark but he had proven to himself that he could provide work at a level that the public would like. In addition to producing academic work, the student stated he found it harder to do this work than a standard essay as there was no template to follow.
Patients' and Carers' Experience The Chairman of the expert panel described the experience as ‘quite a task’ but one he believed that panel members treated seriously and professionally. All panel members reported they had enjoyed the opportunity and were impressed with both the effort put in by the students and the research they had done. They suggested that students in future should consider giving a more accurate account of the prospect of surgery, emphasise the role of diet and give better explanation of medical terms. Some of the written comments were quite blunt and in the Chairman's opinion for example, “would not do some individuals' self-esteem a lot of good” as patients had been honest with their opinions.
Discussion and Conclusion Similar to the findings of Barrow et al. (2002) when they evaluated the EBL approach in an undergraduate nursing programme within one English university, the summative and formative evaluation of the whole learning experience presented and discussed in the article above, revealed an overall positive student experience, even though some of the students found enquiry based learning stressful due to the knowledge that the real experts i.e. the people affected by Crohn's disease would be examining and commenting on their work. In addition, the requirement of the students to direct their own learning and be responsible for their own project management was seen originally as stressful but eventually as very useful. In this instance, enquiry based learning using people affected by inflammatory bowel disease as the assessors, has proved valuable to: the students, the experts themselves and the university teachers, even though it also provided significant challenges to all three groups (Edelson et al., 1999). However, it is acknowledged that the evaluation of the benefits of involvement in this project for the experts was very informal, and it is recommended in future that consideration is given to a more formal triage evaluation of all three groups involved in such projects i.e. the students, the experts and the university teachers. In particular it would be interesting and valuable to know how this method of enquiry involving experts as partners in the development of learning affects the registered nurses' future practice as indicated by Morgan and Jones (2009). It is unsurprising but worth noting here that both students and members of the expert panel independently highlighted presentation and language as key to designing effective patient information leaflets. The general student experience and in particular the student exemplar used here showed that, in contrast to lectures and exam assessment, he carried out thorough background research and tried to appreciate the condition from the patient's perspective. Engaging an expert panel to assess the undergraduate students demonstrated that patients and carers can become partners in developing nursing education to suit their own needs.
Recommendations and Summary 1. Using EBL involving an expert patient group as assessors was a positive experience for all three groups involved: learners, the experts and the academic staff. 2. Evidence based learning was not an easy learning approach to take and was seen as stressful with an increase in the administrative workload, particularly at the outset. 3. This experience was stated as valuable to all three groups involved but rigorous research is recommended in order to unpick exactly what is gained for the expert patients and for the students, in particular what benefits this learning approach has, if any, for the nurses' future practice. 4. The paramount importance of both presentation and language used in any patient leaflet or material is now firmly embedded in all the students' minds and this point will be emphasised with renewed vigour to future students. 5. Probably the most important lesson for the students and the university teachers was that it is not only feasible but advisable to use the ‘experts’, not only in teaching students but also in assisting in the assessment process.
Acknowledgements Chairman and expert patient and carer panel members of Crohn's and Colitis UK Clyde Branch.
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Appendix 1. Inflammatory Bowel Disease Service Standard D. Patient Education and Support Standard D1 — Provision of information ● All patients must be offered appropriate information about their care, treatment options and condition at all stages of their illness. Information should be appropriate to the age, understanding and communication needs of the patient and carers. ● Written information about IBD in straightforward English should be provided in outpatient clinics, ward, and endoscopy areas. ● Information should be available in languages other than English where the catchment population requires this. ● Communications relating to informed consent should be written in clear, straightforward language and staff should ensure they are understood by the patient before signing. ● Patients being considered for surgery, especially pouch surgery or ileostomy, should be offered written and/or audiovisual information, and where possible the option to talk with patients who have had pouch surgery or a permanent ileostomy. They should also be provided with information about their post-operative care, including histology. ● Information should be provided to all inpatients about their care following discharge and the arrangements for follow up. D2 — Education for patients The IBD Service should provide education opportunities for patients and their families, as individuals or in groups, to enable them to understand their illness and the options for treatment and to support them in managing their own care. D3 — Information about patient organisations All patients should be provided with contact information for the relevant patient organisations. D4 — Support for patient organisations There should be regular contact and support from the IBD Team for educational activities for patients e.g. NACC Group meetings, NACC or ICRA paediatric events, IA (The Ileostomy and Internal Pouch Support Group) meetings, local pouch support groups.
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Morgan, A., Jones, D., 2009. Perceptions of service user and carer involvement in healthcare education and impact on students' knowledge and practice: a literature review. Medical Teacher 31 (2), 82–95. NHS Choices, 2010. Available from: http://www.nhs.uk/Conditions/Expertpatientsprogramme-/Pp/Introduction.aspx. Pine, J., Aschbacher, P., 2006. Students' learning of inquiry in ‘inquiry’ curricula. Phi Delta Kappan (on line) 88 (4), 08–313. Royal College of Physicians, 2006. UK Inflammatory Bowel Disease Audit 2006: national results for the organisation and process of IBD Care in the UK. Available from: http://ibdaudit.rcplondon.ac.uk/college/ceeu/ceeu_uk_ibd_audit_2006.pdf. Rush, B., Barker, J.H., 2006. Involving mental health service users in nurse education through enquiry based learning. Nurse Education in Practice 6 (5), 254–260. Sambell, K., 2011. The impact of enquiry-based learning: student perspectives of the links between discipline-based research, teaching and studentship. Ahttp://www.gla.ac.uk/ services/planning/information/learningteachingstrategypubliclyavailableinformation/. University of Glasgow Code of Assessment Schedule A. Primary verbal descriptors for attainment of intended learning outcomes. Accessed September 2011. Available from http://www.gla.ac.uk/media/media_124293_en.pdf. University of Glasgow Learning and Teaching Strategy (publicly available information) accessed September 2011. Available from: http://www.gla.ac.uk/services/planning/ information/learningteachingstrategypubliclyavailableinformation/.
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Nurse Education Today journal homepage: www.elsevier.com/nedt
Patients assessing students' assignments; Making the patient experience real Jane Munro a,⁎, Fiona Whyte a, 1, Jim Stewart b, Andrew Letters c a b c
Nursing and Healthcare, University of Glasgow, G12 8QQ, UK Crohn's and Colitis UK Clyde Group, UK Nursing and Healthcare, University of Glasgow, G12 8QQ, UK
a r t i c l e
i n f o
Article history: Accepted 4 November 2011 Keywords: Patient experience Patient engagement Enquiry based learning Undergraduate nurse education
s u m m a r y The care of patients with inflammatory bowel disease (IBD) frequently falls short of the highest standards. This is noted in several publications, including national standards, despite nursing students being taught the importance of listening to and understanding patients. Teaching staff at the University of Glasgow primarily responsible for teaching third year undergraduate nursing students undertook a radical rethink of the planning, delivery and assessment of lectures on IBD. The subject had previously been delivered in a modified lecture format. Although the topic could be included in the end-of-year exams, there was little evidence to show whether this traditional teaching method had any effect on students' clinical practice. In a novel approach to learning and assessment, students were invited to research and produce an information leaflet for newly diagnosed patients with IBD. The leaflets were then assessed and grades awarded by an expert panel of patients and carers. Such enquiry based learning (EBL) intended to demonstrate in practice, the key role patients can play in both undergraduate nurse education and in service planning and delivery in the National Health Service (NHS). The panel found the exercise both interesting and insightful, while the students reported being invigorated and felt the expert assessment meant they were forced to achieve a higher level of work. © 2011 Elsevier Ltd. All rights reserved.
Introduction Up to 55 students undertake the third year of the Bachelor of Nursing undergraduate degree programme at the University of Glasgow. Originally, students were taught the theory of nursing care for patients with Inflammatory Bowel Disease (IBD) through a series of traditional instructional technique lectures. At the end of the year, this knowledge could be tested in the written unseen summative examination which contributed to the final degree award. The treatment and care of patients with IBD has been the subject of considerable concern highlighted by the publication of national standards (Inflammatory Bowel Disease Standards Group, 2009). Simultaneously, the National Health Service (NHS) has placed increasing importance on involving patients in their care and planning health services. In response to these findings an internal departmental review of the IBD subject content highlighted the need for changes in approaches to both learning and assessment. The introduction of enquiry based learning (EBL) was an attempt to increase student awareness of the nursing
⁎ Corresponding author. Fax: + 44 141 330 5612. E-mail addresses: [email protected] (J. Munro), [email protected] (F. Whyte), [email protected] (J. Stewart), [email protected] (A. Letters). 1 Tel.: + 44 7880730292. 0260-6917/$ – see front matter © 2011 Elsevier Ltd. All rights reserved. doi:10.1016/j.nedt.2011.11.002
care patients with IBD required and to highlight the pivotal role patients play in informing nursing practice.
Background Inflammatory Bowel Disease National Audit Results; Shortfall in Service and Care Ulcerative colitis and Crohn's Disease are the main conditions described as IBD. They are lifelong conditions most commonly presenting in patients' teenage years and in their twenties. As many as 1.4 million people in the United States and 2.2 million in Europe suffer from these diseases (Edward, 2004). The key effects are inflammation and ulceration in the colon and rectum (ulcerative colitis) or anywhere in the gastrointestinal tract (Crohn's Disease). Both conditions can produce symptoms of urgency, diarrhoea, pain, profound fatigue and anaemia, with, for some patients, associated inflammation of the joints, skin, liver or eyes. In addition, malnutrition and weight loss are common. It is important to note that IBD follows an unpredictable relapsing and remitting course consequently there is significant variation in the pattern and complexity of the symptoms between different patients and in individuals over time. Education, working, social and family life are all disrupted by the unpredictable occurrence of flare-ups and symptoms may severely affect selfesteem and social functioning, particularly among the young and
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newly-diagnosed (Inflammatory Bowel Disease Standards Group, 2009). It is therefore clear that patients with IBD need complex and comprehensive nursing care which can only be achieved with an understanding of the long-term debilitating effects of the condition. However, a National Audit of Adult Inflammatory Bowel Disease Services and Care (Royal College of Physicians, 2006) revealed unacceptable variation in several important aspects of care. For example, only 52% of patients admitted with Crohn's Disease were weighed and 37% seen by a dietician. In response to these shortcomings, Standards for Inflammatory Bowel Disease Services were published (Table 1) to help ensure patients with IBD received “safe, effective and of consistently high standards of care”. From Instructional Technique to Enquiry Based Learning (EBL): The Logical Choice to Capture Patient and Carer Experiences The original instructional lecture format for this subject matter had been deemed acceptable because it allowed a large amount of information to be given to students without the need for a limit on class numbers. It had been a good medium for teaching facts about IBD and it was relatively straightforward to objectively measure what students had learned using the University of Glasgow's Code of Assessment Schedule A (2011). However, this format was not considered ideal to help students make the necessary transition from theoretical knowledge to practical application. The impact of lectures on the learner is mainly aural and it is not considered to be particularly effective for developing the higher-order thinking skills necessary for professional practice (Kern et al., 2010). Students were neither being placed at the centre of learning nor being given the opportunity to engage actively with the topic. It became obvious students needed a greater understanding of how IBD affects both patients and carers in order to enhance their care and determine what, in the patients' opinion, was the most beneficial kind of information and in what format they preferred. To attain these learning outcomes EBL was employed for the first time in this subject area. Literature Pertaining to Enquiry Based Learning Enquiry based learning is an approach which has been used routinely for some time in undergraduate medical education in various medical schools both in the UK and in North America; up until very recently this approach has been the predominant method of enquiry for students studying medicine from year one at the University of Glasgow. For nursing students this learning method is not one which has been used routinely, but rather one which is used, if the subject under investigation is considered appropriate. It tends to be used more frequently in senior years of the course where there is a definite shift in the curriculum towards student-centred education (Milligan, 1999). End of year evaluations from students completing an ordinary degree at third year and those with honours at fourth year concur with Collivers's findings in that it is a motivating and enjoyable way to learn (Colliver, 2000). In addition, it is hoped that this
Table 1 Service standards for the healthcare of people who have Inflammatory Bowel Disease (IBD). ● ● ● ● ● ●
Standard A — High quality clinical care Standard B — Local delivery of care Standard C — Maintaining a patient-centred service Standard D — Patient education and support Standard E — Information technology and audit Standard F — Evidence-based practice and research
learning method provides the students with enhanced skills for working as registered nurses but as yet there is no empirical evidence to prove or disprove this theory. Kveven et al. (2007) believe this method of learning encourages life long learners as the students are empowered to become active participants in their education due to their ability to make observations and to explore topics where they have to communicate with others rather than merely follow directions. These North American researchers have examined EBL using expert partners in the fields of science, history and food safety. Pine and Aschbacher (2006) agree with these beliefs and go on to add that EBL requires the learners to do more than merely internalise a body of existing knowledge and to ask and test their own questions. Enquiry based learning has helped students reach a point where they are not simply investigating questions posed by others, but forming their own research topics and converting that research into knowledge that is appropriate for a practice-based discipline. Furthermore, Hutchings (cited in Sambell, 2011) proposes that enquiry based learning does more than inspire students to learn for themselves, but in addition, brings a real research-orientated approach to the subject. It has also been observed that students are more enthusiastic and engaged with a subject when learning is perceived to be relevant to their needs (Edelson et al., 1999). Evidence based learning covers a spectrum of approaches which are presented in Table 2. Two further factors supported this choice of a research-based EBL approach. (1) A key component of The Expert Patient Programme (NHS Choices, 2010) is developing effective partnerships with healthcare providers. This suggests nurses need to be involved with: ∙ providing greater access to services, e.g. by supplying information on services appropriate to the patient ∙ keeping up to date with the latest developments and treatment options for chronic diseases ∙ empowering the patients to allow them to make the best choices for their treatment and lifestyle ∙ listening to feedback from the patient and being an active partner in developing care to suit their needs (2) Standard D of the Standards for Inflammatory Bowel Disease specifically ‘Patient Education and Support’ which places a similar emphasis on information provision and education (Appendix 1) The relevant academic staff, in conjunction with the head of the school, gave due pedagogical consideration about the introduction of EBL particularly as it involved working in such close partnership with patient representatives. This proactive strategy helped establish effective working relationships and a better appreciation of one another's remit in the process. Furthermore, from the outset, it ensured the process was closely aligned with the module learning outcomes specifically those relating to the students' ability to 1. integrate and use information from a variety of disciplines to demonstrate an holistic understanding of the needs of the individual patient 2. discuss issues of importance to the service user in the provision of health care for patients in hospital and primary health care settings In contrast to the passive approach of learning through lectures and assessment through examinations, students were asked to design an information leaflet for newly diagnosed patients. These would be assessed by an ‘expert ’ panel of patients and carers, a new departure as assessment had previously been undertaken by teaching staff. The intention was to ensure the nursing knowledge was generated from the patients ' experience.
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Table 2 Methods of enquiry based learning (EBL).
Patient and Carer Engagement in the Enquiry Based Learning and Assessment Process
for attainment of intended learning outcomes), (2011), already familiar to students for guidance in order to award the final grades.
An extensive literature review of service user and carer involvement in healthcare education by Morgan and Jones (2009) notes that involvement has followed an increasing focus on patient-centred services within the health service. Their findings demonstrate both students and service users benefit from involvement in health care programmes and corroborates with similar studies in the mental health field where for example Rush and Barker (2006) noted that all students reported a positive impact on their learning and service user involvement improved their enquiry based learning experience. Furthermore McAndrew and Samociuk (2003) found that users felt they were in the dominant position as they could offer real life experience. In terms of application to nursing practice, it is however worthwhile noting that there is limited evidence to suggest that service user involvement actually leads to changes in behaviour in practice or significantly benefits the service user receiving care (Morgan and Jones, 2009). This was noted and discussed when preparing students and service users for their role in order to help manage expectations and give the opportunity to consider mechanisms for improving practice in the future.
Students Involved in the Assignment As 52 students undertook this assignment it was obviously impossible to describe or discuss in any detail all the student's efforts. It was also felt unfair to compare and contrast a few pieces of work in this publication and it was therefore decided, for the purposes of this paper, to use one student's work as an exemplar. However, it is worth mentioning at this point, that all 52 students formally evaluated the experience positively and because of the success of the assignment it has been decided to further develop this form of patient informed learning and in future years the assignment will include a full reflective cycle, where following feedback from the expert patients, the students will be allowed to reflect and improve their leaflet.
Phase 1. The Student Brief Students were given the new task of designing a patient information leaflet that would be formatively assessed. Their work was intended to be suitable for a newly diagnosed patient with either condition and was to include information and education on the aetiology, symptoms, prognosis, treatment and support. Students were asked to consider presentation, language and graphics that would be appropriate to the patient group. Students were advised that, unlike in previous years, academic staff would not be assessing their work but a panel of ‘expert’ patients from the local branch of Crohn's and Colitis UK i.e. Clyde branch overseen and supported by the course academic staff. This development would align the anticipated assessment method with the current University of Glasgow Learning and Teaching Strategy (2011) which among other objectives, includes ‘Excellence in Learning and Teaching’ to ensure help staff continually develop assessment and feedback methods effective in promoting student learning. Panel members would use the University of Glasgow 22 point scale, Code of Assessment Schedule A, (a matrix of verbal descriptors
Phase 2. Establishing the ‘Expert Patient’ and Carer Assessment Panel Following a thorough briefing with staff and discussion with other committee members, the Chairman of the Crohn's and Colitis UK Clyde branch agreed to establish an ‘expert’ panel which would have the responsibility of assessing the submitted assignments. Crohn's and Colitis UK brings together people of all ages who have ulcerative colitis or Crohn's Disease, along with their families and the health professionals involved in their care. The six-strong panel was drawn from the Crohn's and Colitis UK Clyde group and both male and female members had a wide range of life experience and years of living with the disease (Table 3). The students' work was posted to the Chairman and a date agreed to discuss their findings. The panel was referred to the university code of assessment described above which was routinely used for formative and summative assessment across the university. Approval for the local branch involvement was sought from the Crohn's and Colitis UK head office and costs incurred for fuel, parking and postage were volunteered by the organisation. Ethical Considerations User involvement in any form of participatory activity raises many ethical issues. It was acknowledged that as the course of this chronic disease is often unpredictable some participants might be unable to fulfil the commitment due to ill health or frequent hospital appointments. Due consideration was given to the four pillars of health care
Insoluble fibre; excellent! Affects everyone differently—excellent My mum's favourite as it's not scare mongering and she liked its personal style Good nutritional treatment advice Surgery results in a colostomy not an ileostomy Again stoma mentioned too soon, not required in newly diagnosed patients. Too alarmist Symptoms should include frequency of stools It would be a stoma not an external pouch Steroids not Cohn's causes bone thinning No links on advice on where to go for more info Removing the whole colon is not the only surgical treatment available High fibre diet is NOT recommended for Cohn's Disease; be wary of saying that, even if having no symptoms. Should say something like “only if you can tolerate them” Not much about diet or treatment though Too medical Pity no diagrams Presentation, layout, graphics are basic Does not explain medical terms It is a disease, not a ‘disorder’ Too basic, not a lot of effort has gone into this Impersonal
Table 3 Details of the ‘expert patient and carer panel’ members. Patient 1
Patient 2
Patient 3 Carer 1 Carer 2 Carer 3
This patient was one of the ‘much younger’ members of Crohn's and Colitis UK Clyde Group with Crohn's disease who had spent the majority of the previous 9 months in hospital A volunteer for Crohn's and Colitis UK for many years and who was considered by other members to be the person with the best knowledge of the diseases in the Group The wife of the Chairman who has had ulcerative colitis for about 10 years or so The mother of Patient 1 The best friend of Patient 1 The Chairman of the Crohn's and Colitis UK west of Scotland branch
ethics i.e. autonomy, beneficence, non maleficence and justice (Beauchamp and Childress, 2001) specifically that participants could withdraw at any time without prejudice. Interestingly the Chairman also believed local members of Crohn's and Colitis UK would benefit by embarking on an innovative project with the local university and promote the proactive activities of the local branch at a national level. Furthermore he considered it an excellent opportunity to increase nurses' understanding of IBD and what it is like to live with them with the eventual outcome of enhancing their nursing care helping to meet Standard D of the Standards for Inflammatory Bowel Disease relating to patient education and support. It was also agreed at the end of the project that the collaboration would be widely publicised in the organisation's national newsletter.
Fantastic, clear, concise Clear concise reading
No links or referencing Layout a tad confusing Too short Negative
Language Length
Positive
In addition to the University of Glasgow Code of Assessment Schedule A (2011), the Chairman also designed two marking schedules or ‘marking frames’. All assignments were made anonymous using the students' university registration numbers. Marking Frame 1 was designed to assess whether or not the student had responded to the brief in their leaflet i.e. ‘to design a patient information leaflet on either Crohn's/Colitis for a patient who has been recently diagnosed outlining the possible causes, treatments, prognosis and support available. The schedule was presented in a grid format with the criteria being assessed against the students' university registration number and scored out of a possible 5 (1 meeting the criteria the least, 5 the most). Using this frame was a matter of ‘had the item been covered’ then ‘how well’. Marking Frame 2 was more about issues of judgement that the panel as patients and carers considered important e.g. length, language, interest and helpfulness. No guidelines were laid down on how to judge this and space was made available for panel members to add comments if they wished. The Chairman noted that ‘unlike other Crohn's and Colitis UK Clyde group activity, the assessment process was not done by committee i.e. sitting together discussing the assignments’. This allowed individuals the opportunity to draw their own conclusions and document these in their own time and way without the restrictions of a committee structure. Furthermore, because of their illness and the unpredictable nature of the condition, members were often unable to attend meetings therefore each panel member either handdelivered or posted the assignments to the next. The Chairman started the process by ‘marking’ each of the leaflets against both marking frames without consulting anyone else. The coursework was then passed to the next panel member with his completed frames but no detailed comments. This process continued until all panel members had the opportunity to grade them and make comments. Comments were organised under the themes of length, language, interest and helpfulness (Table 4). Each reviewer then gave an overall grade by matching the individual student's performance for both marking frames against the
Table 4 Extract from expert panel comments on patient information leaflets.
Phase 3. Patient and Carer Generated Code of Assessment; Methodology and Data Analysis
Does not go into enough detail at all American terms used. Little mistakes like this make it impersonal for reader Doesn't explain some medical terms e.g. mucosa, palpitation It is indeed a scary read
Helpfulness/accuracy Interest
Good headings, information accurate
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Really liked the section on surgery Well thought out, well explained and non-alarmist Very good. Info great, presentation okay
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University of Glasgow Code of Assessment Schedule A (2011). All assessors stated which assignment they preferred. All the marking frames were then returned to the Chairman who collated the responses and drew up a shortlist of about 10 student registration numbers and related information leaflets. He then passed these to his wife, who has had ulcerative colitis for about 10 years. She then went through the shortlist adding her comments and views. Finally, the Chairman pulled all the information together and found there was unanimity among the assessors identifying the winner and two ‘runners-up’. Limitations in the assessment process are acknowledged. Marking was not carried out entirely independently due to practical and time restrictions i.e. patients were participating in their own time, often between hospital appointments and in general did not live in close proximity to one another. This limitation was discussed from the outset; however, the Chairman gave strong reassurance that knowing the members of the branch individually meant that the panel members were chosen as ‘expert patients’ whose opinions would be frank, objective and honest based on personal experiences of their illness. The Chairman stated that each of the panel members he noted brought something unique to the exercise. Phase 4. Feedback Mechanisms Employed The Chairman met the course leader and head of school to discuss and approve their findings and return the marking frames for future reference. The winning student was notified and written comments were returned to all students as part of the feedback. Comments about the winning leaflet (Diagram 1) included: ∙ ∙ ∙ ∙
Like the first page, presentation and graphics are great Like the title on the first page Very good statistics Loved the thought bubbles/questions
∙ ∙ ∙ ∙
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Excellent referencing/links Excellent Tonnes of effort put in My favourite
Student Feedback — Retrieval and Analysis Similar to the Chairman, the course leader would have preferred to meet with the student face to face however this was not possible due to clinical commitments. The course leader therefore met him briefly to agree to an acceptable feedback mechanism. For practical purposes it was agreed the student would e-mail the course leader his thoughts under four headings; • • • •
Perceived challenges Organisation and management of work Reflection and changes to clinical practice Thoughts on EBL as a learning technique
The student was initially reluctant to participate due to other commitments and lack of confidence however after additional reassurance submitted a detailed and insightful account. The student was thanked for his participation. The Student Experience The student given the highest grade then gave his reflections on having his work judged by patients and carers instead of academic staff. He noted that “early on it became clear to me that this would not be a routine assessment of written work. The people assessing the leaflet were not likely to be of a medical/nursing background, had suffered from one of these conditions and would probably have read a lot of leaflets pertaining to the subject”.
Diagram 1. Extract from student information leaflet.
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The student felt this approach to assessment “piled on the pressure” to get everything exactly right with no room for mistakes. The student foresaw two main challenges: Presentation: if a leaflet looked boring the chances are that he wouldn't read it and therefore he couldn't expect others to read it either. Language: the student remembered being told that information for patients should be aimed at upper primary school ages and he anticipated difficulties in writing about a disease like Crohn's or ulcerative colitis for an adult reader using simplistic terms. The student researched information for the leaflet using patient information websites and NHS publications to give him an indication of the level of language used in a leaflet for the public. He also found websites useful for identifying information needed for someone newly diagnosed with a condition, with topics such as symptoms and available treatments. The student then set about creating a leaflet, ordering the information in a logical way. It was at this point he had the insight to realise that the student was still approaching the task the “wrong way around” in that the student was still thinking as a health professional when really the student needed to look at this through the eyes of a patient. It was a condition the student had known little about before starting so he needed to think, for example, “How would I feel if I had just been diagnosed with Crohn'sand what would I need to know?” The student considers that this thought process allowed him to write the information in a way anyone could understand while getting across key messages he thought would be important. Once he had the information he needed he fitted it into a leaflet and attempted to make it look like an interesting read. On reflection, the student noted that having originally felt lost at being asked to design a leaflet that would be judged by the public, the student had found a strategy to cope that worked personally. The student came to realise the benefits this exercise had offered him as a student nurse including the ability to give information that needed to be easily understood by the patient. The student also noted that this exercise acted as a reminder about the importance of not talking at a professional level, using “all the jargon” that to health care professionals seem simple while forgetting that in hospital, the patient already vulnerable and in an alien environment, is unlikely to understand. The student noted: “this crucial lesson will hopefully stay with me and in doing soimprove my ability to nurse and include the patient in their care”. When the student was told he had achieved the highest mark, he expressed surprise that his work had impressed the judges from NACC so much. In his own words, he had “started in the dark, not knowing in which direction I was supposed to go, and that to find I had taken the right path was reassuring.” Not only had he received the top mark but he had proven to himself that he could provide work at a level that the public would like. In addition to producing academic work, the student stated he found it harder to do this work than a standard essay as there was no template to follow.
Patients' and Carers' Experience The Chairman of the expert panel described the experience as ‘quite a task’ but one he believed that panel members treated seriously and professionally. All panel members reported they had enjoyed the opportunity and were impressed with both the effort put in by the students and the research they had done. They suggested that students in future should consider giving a more accurate account of the prospect of surgery, emphasise the role of diet and give better explanation of medical terms. Some of the written comments were quite blunt and in the Chairman's opinion for example, “would not do some individuals' self-esteem a lot of good” as patients had been honest with their opinions.
Discussion and Conclusion Similar to the findings of Barrow et al. (2002) when they evaluated the EBL approach in an undergraduate nursing programme within one English university, the summative and formative evaluation of the whole learning experience presented and discussed in the article above, revealed an overall positive student experience, even though some of the students found enquiry based learning stressful due to the knowledge that the real experts i.e. the people affected by Crohn's disease would be examining and commenting on their work. In addition, the requirement of the students to direct their own learning and be responsible for their own project management was seen originally as stressful but eventually as very useful. In this instance, enquiry based learning using people affected by inflammatory bowel disease as the assessors, has proved valuable to: the students, the experts themselves and the university teachers, even though it also provided significant challenges to all three groups (Edelson et al., 1999). However, it is acknowledged that the evaluation of the benefits of involvement in this project for the experts was very informal, and it is recommended in future that consideration is given to a more formal triage evaluation of all three groups involved in such projects i.e. the students, the experts and the university teachers. In particular it would be interesting and valuable to know how this method of enquiry involving experts as partners in the development of learning affects the registered nurses' future practice as indicated by Morgan and Jones (2009). It is unsurprising but worth noting here that both students and members of the expert panel independently highlighted presentation and language as key to designing effective patient information leaflets. The general student experience and in particular the student exemplar used here showed that, in contrast to lectures and exam assessment, he carried out thorough background research and tried to appreciate the condition from the patient's perspective. Engaging an expert panel to assess the undergraduate students demonstrated that patients and carers can become partners in developing nursing education to suit their own needs.
Recommendations and Summary 1. Using EBL involving an expert patient group as assessors was a positive experience for all three groups involved: learners, the experts and the academic staff. 2. Evidence based learning was not an easy learning approach to take and was seen as stressful with an increase in the administrative workload, particularly at the outset. 3. This experience was stated as valuable to all three groups involved but rigorous research is recommended in order to unpick exactly what is gained for the expert patients and for the students, in particular what benefits this learning approach has, if any, for the nurses' future practice. 4. The paramount importance of both presentation and language used in any patient leaflet or material is now firmly embedded in all the students' minds and this point will be emphasised with renewed vigour to future students. 5. Probably the most important lesson for the students and the university teachers was that it is not only feasible but advisable to use the ‘experts’, not only in teaching students but also in assisting in the assessment process.
Acknowledgements Chairman and expert patient and carer panel members of Crohn's and Colitis UK Clyde Branch.
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Appendix 1. Inflammatory Bowel Disease Service Standard D. Patient Education and Support Standard D1 — Provision of information ● All patients must be offered appropriate information about their care, treatment options and condition at all stages of their illness. Information should be appropriate to the age, understanding and communication needs of the patient and carers. ● Written information about IBD in straightforward English should be provided in outpatient clinics, ward, and endoscopy areas. ● Information should be available in languages other than English where the catchment population requires this. ● Communications relating to informed consent should be written in clear, straightforward language and staff should ensure they are understood by the patient before signing. ● Patients being considered for surgery, especially pouch surgery or ileostomy, should be offered written and/or audiovisual information, and where possible the option to talk with patients who have had pouch surgery or a permanent ileostomy. They should also be provided with information about their post-operative care, including histology. ● Information should be provided to all inpatients about their care following discharge and the arrangements for follow up. D2 — Education for patients The IBD Service should provide education opportunities for patients and their families, as individuals or in groups, to enable them to understand their illness and the options for treatment and to support them in managing their own care. D3 — Information about patient organisations All patients should be provided with contact information for the relevant patient organisations. D4 — Support for patient organisations There should be regular contact and support from the IBD Team for educational activities for patients e.g. NACC Group meetings, NACC or ICRA paediatric events, IA (The Ileostomy and Internal Pouch Support Group) meetings, local pouch support groups.
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