The Derby renal unit has been in existence since 1969, when the first patients were dialysed.
Today the unit has 245 haemodialysis and 85 peritoneal dialysis patients, and the new hospital is now attached to a satellite of Nottingham University’s medical school.
Renal services at the Royal Derby Hospital include a 24-bed inpatient area (including 4 renal high dependency beds and another 4 medical high dependency beds). The unit also includes 56 chronic haemodialysis stations.
The renal unit also has a dedicated outpatient area where all the clinics are held. The clinics are multi-disciplinary with involvement from dieticians, dialysis nurses, anaemia nurses, pharmacists, kidney care nurses and other professionals including a vascular consultant and diabetologist.
The unit covers a population of between 700,000-1,000,000, providing both acute and chronic renal failure support covering Southern Derbyshire and parts of South Staffordshire, North Derbyshire and North West Leicestershire. The unit also has a home haemodialysis training facility and 9 isolation beds.
Most of the patients are on unit-based haemodialysis. 50 patients are on home haemodialysis and 85 patients on peritoneal dialysis. The unit also follows approximately 250 transplant patients, who are followed up 3 months after the transplant surgery.
The department carries out between 150-200 renal biopsies every year, and place 150-200 catheters (tunnelled haemodialysis or CAPD) under X-ray guidance. The renal unit at the Royal Derby Hospital is a very research active department. The Centre for Kidney Research and Innovation (CKRI) encompasses academic nephrology at the University of Nottingham and clinical nephrology at the Royal Derby Hospital. The Centre’s aim is to deliver an innovative programme of clinical and translational research in kidney disease and dialysis therapy, which will directly lead to improvements in treatments and outcomes for patients. They have an extremely strong track record in obtaining grant funding, publishing their results in peer-reviewed journals and in providing high quality training for research fellows. Their key areas of research activity are Acute Kidney Injury (AKI), Chronic Kidney Disease (CKD), the haemodynamic and cardiovascular effects of dialysis and clinical application of MRI in renal disease.
The Library and Knowledge Service has a long standing relationship with the renal unit, and has it’s own dedicated Clinical Librarian who supports the unit by attending weekly ward rounds, undertaking complex literature searches, providing information skills training and supporting journal clubs.
In the autumn, the Library received a request for assistance from their Senior Clinical Educator (Haemodialysis). The SCE is currently completing a systematic review looking at Randomised Controlled Trials (RCTs) that compare different cannulation techniques for haemodialysis. Cannulation is the process of inserting a cannula (i.e. a tube) into a bodily cavity, duct, or vessel in order to drain fluid or administer medication.
The SCE has a haemodialysis patient as a co-author. She wanted a librarian to spend some time with the patient whilst he is on haemodialysis, talking through how to read medical literature including critical appraisal techniques. The patient could not attend a session away from the haemodialysis unit as he works full time, as well as attending haemodialysis 3 times a week. Unfortunately the clinical librarian was currently on long-term sickness absence so I, as Training Librarian, was asked to provide the training. My role is primarily to develop and deliver a range of information skills training to Trust staff. I also undertake literature searches to support patient care, service development and research.
Haemodialysis (HD) is the most common method used to treat end-stage renal disease
It has been available since the 1960s but has obviously seen many improvements since then.
However, despite some advances in dialysis machines in recent years, haemodialysis is still a complicated and inconvenient therapy
Most patients have dialysis three times a week for 3-5 hours; either a morning, afternoon or evening 'slot', depending on availability and capacity at the dialysis unit
The systematic review that the Senior Clinical Educator is undertaking, can be viewed on Prospero, the International Prospective Register of Systematic Reviews (https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=94656)
The systematic review is entitled, ‘Comparison of outcomes of buttonhole and rope ladder cannulation of arteriovenous fistulae used for haemodialysis for patients with end-stage kidney disease: a systematic review of randomised control trials’.
Review question Question: What effect do different cannulation techniques (buttonhole, rope ladder, area puncture) have on the outcomes of patency, infection rate and patient experience for arteriovenous fistulae or grafts cannulated by healthcare professionals for adults undergoing in-centre haemodialysis for end stage kidney disease?
Objectives: 1) Identify the results of randomised control trials that compare cannulation techniques for arteriovenous fistulae or grafts cannulated by healthcare professionals for adult in-centre haemodialysis 2) Identify valid outcomes used by randomised control trials that compare cannulation techniques for arteriovenous fistulae or grafts cannulated by healthcare professionals for adult in-centre haemodialysis 3) Identify the strength and limits of randomised control trials that compare techniques for arteriovenous fistulae or grafts cannulated by healthcare professionals for adult in-centre haemodialysis
Condition or domain being studied Haemodialysis is a life sustaining treatment for patients with end stage kidney disease, providing essential replacement of their lost kidney function. Adequate access to the circulation is critical to ensure haemodialysis treatments can be performed. This requires artificially formed ‘vascular access’ to provide adequate flows for haemodialysis and sustain access to the circulation for periods of years. Provision of sustainable vascular access with minimal complications is a significant challenge for haemodialysis patients and health care professionals
The aim of involving the patient is to capture the patient’s opinion in the context of his personal experience of needling (i.e. having cannulas inserted), alongside the systematic data extraction and critical appraisal performed by 2 other authors.
To understand whether the patient believes the findings are: Relevant to them
Whether they felt the patient experience was adequately reflected in the studies (another SR claims these studies do capture patient experience)
Is the patient interpreting the results in a way that is correct?
Has the author’s interpretation missed the point, from a patient's perspective?
The SCE thought it would be worth catching this in a systematic manner rather than just chatting to him, so she’s created a form for him to complete. The authors doing data extraction would then be able to analyse the patient’s thoughts and use it to assist in their interpretation of the formal data extraction and critical appraisal.
The form included these questions (incorporating different question types): How relevant were the findings to you as a haemodialysis patient? What are the 3 most relevant findings from the study from your perspective? How relevant were the outcomes, to you as haemodialysis patient undergoing regular needle insertions? Were there any additional outcomes you would have liked to have seen measured? Do you feel the outcomes captured the patients’ experiences of needle insertion adequately? Did you agree with the interpretation of the findings and conclusions drawn? Please state what you agreed / disagreed with (max. 3 points). Was there anything else you felt was good about the study? Was there anything else you felt was bad about the study?
I was asked my opinion re: the form and I made a few suggestions: Maybe use a shorter numerical scale, perhaps with a description of each number to avoid a default middle option Perhaps use other words other than relevant in some of the questions e.g. pertinent, significant, important, applicable, appropriate, Maybe ask a question saying "Do you think the patient experience was adequately reflected? If not, please explain." Maybe also ask if he thought the author's interpretation missed the point, from a patient's perspective?
Also of note, is that the patient is already an expert patient. In other words this is someone who understands their condition extremely well and is actively involved in managing their condition.
It is not necessarily someone who has been on the Expert Patients Programme, though this may be the case.
MS Trust https://www.mstrust.org.uk/a-z/expert-patients-programme
I began by chatting to him, finding out a bit about him what he’s enjoying about being involved with research. The aim was to find out his prior knowledge – how information literate he is, what level of awareness of journalistic spin he had.
Discovered he works in IT and is naturally suspicious and sceptical so questions what he reads and what is being put out by the media.
However he was not familiar with critiquing medical literature.
So I devised a training session for him, returning the following week.
The sessions was based on the introduction to critical appraisal sessions that I deliver as part of my usual role.
I explained the hierarchy of evidence – the pyramid demonstrating the evidence strength of each study type.
RCTs are the highest level of evidence beneath a systematic review.
Taken from: http://alertandoriented.com/the-devolution-of-evidence-based-medicine/
"Research design and evidence" by CFCF - Own work. Licensed under CC BY-SA 4.0 via Wikimedia Commons -
I then explained the concept of critical appraisal – “the process of carefully and systematically assessing the outcome of scientific research/evidence to judge its trustworthiness, value and relevance in a particular context” [https://www.cebma.org/resources-and-tools/what-is-critical-appraisal]
I introduced him to the Critical Appraisal Skills Programme (CASP). The Critical Appraisals Skills Programme is based in Oxford and has over 25 years expertise in delivering training to healthcare professionals. They have provided 8 tools tailored to different study types including systematic reviews and randomised controlled trials (RCTs).
We worked through the RCT one. It is divided into 3 sections: validity, results and applicability.
I also mentioned Behind the Headlines, an NHS guide to the science that makes the news headlines [https://www.nhs.uk/news/]
I also gave the patient the Fake News poster from IFLA
Source: International Federation of Library Associations (IFLA)
5 month’s later I returned to the patient to find out how he had got on and what impact my training had had.
I asked him how he thought it had helped him. He said it had provided a useful background to research for him and that it had helped with judging papers; he now looked for things that he hadn’t considered before, for example trial recruitment methods and loss to follow up (i.e. did they account for everyone who dropped out of a trial) He also looks for the motivations of the researchers (for example do they have any conflicts of interest e.g. drug company association) and no longer takes published research at face value.
I then asked if he now felt that he had a greater understanding of the pitfalls in research He said he is now able to spot bias by purposeful omissions – what have they not said He also has a greater confidence in reading between the lines and being able to spot buried information
I also asked what other benefits he has found with being involved in research He said he is now more motivated to learn more about his treatment and feels more confident in reading papers on his condition. He said it has also given him an added dimension to his hospital visits, he can see the research behind the scenes He said it’s been interesting seeing what other research projects are out there concerning his condition
Lastly I asked if there were any unforeseen benefits He said it had made him realise how good at research we are at the Royal Derby Hospital and also how good the department is at infection control.
So, what benefits can this type of intervention have for patients?
One major benefit is enhanced information literacy skills.
This can take the form of bibliotherapy, which is:
Bibliotherapy…. “……directed reading with a therapeutic dialogue or interaction between the patient and a facilitator, often librarian, who has received special training.” (Rani & Hemavathy 2016)
Also information therapy. This is:
Information Therapy “…a new term for supplying patients with health information, enabling them to make informed decisions about their health and care, participate in their own well-being, and thus decrease the utilization of healthcare resources.” (Rani & Hemavathy 2016)
[Rani, A. N. & Hemavathy, V. (2016). Information Therapy. International Journal of Science and Research 5(1), 417-418.]
Patients are increasingly being involved in research. In turn, research is enriched by direct patient and public involvement.
The NIHR (National Institute for Health Research) states that “Patients, carers, and the public are essential to our work. You are our greatest strength and we could not do our work without your help. Involving you in our work is one of our key organisational goals.”
NIHR INVOLVE – “INVOLVE defines public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. This includes, for example, working with research funders to prioritise research, offering advice as members of a project steering group, commenting on and developing research materials, undertaking interviews with research participants.”
The National Institute for Health and Care Excellence (NICE)’s approach to patient and public involvement is based on two key principles: 1) that lay people, and organisations representing their interests, have opportunities to contribute to developing NICE guidance, advice and quality standards, and support their implementation, and 2) that, because of this contribution, our guidance and other products have a greater focus and relevance for the people most directly affected by our recommendations.
The King’s Fund, the health policy think tank, has a suite of resources on their work on the role of patients and the public in health and care and service design
The King’s Fund’s work on the role of patients and the public in health and care and service design.
Going forward the Senior Clinical Educator will sit with the patient to ask him what he felt were the benefits of being involved in the systematic review, which will, in turn, influence patient involvement in future research.
A publication is also planned concerning our patient involvement in the systematic review- a pre-cursor to supporting methodological development of Patient & Public Involvement in Systematic Reviews. I have been asked to be one of the co-authors.
Thank you for listening. Do you have any questions?
By Barry Mangham [CC BY-SA 3.0 (https://creativecommons.org/licenses/by-sa/3.0) or GFDL (http://www.gnu.org/copyleft/fdl.html)], from Wikimedia Commons
Providing critical appraisal training to a haemodialysis patient - Toft
Providing critical appraisal training to a
haemodialysis patient involved in a
Suzanne Toft BA (Hons) PGDip MScEcon MCLIP
Training Librarian (Chartered)
Background to research patient is involved in
How health librarians can interact and engage with patients
involved in research
Benefits to patient
Library received request from Senior Clinical Educator (Haemodialysis)
Renal unit very research active
Long standing relationship with Library
https://units.renal.org/index.pl?c=derby [Accessed 2 April 2019]
Most common method used to treat end-stage renal disease
Available since 1960s
Still a complicated and inconvenient therapy
Three times a week for 3-5 hours
(Kidney Care UK, undated)7
Comparison of outcomes of buttonhole and rope ladder cannulation of arteriovenous fistulae
used for haemodialysis for patients with end-stage kidney disease: a systematic review of
randomised control trials
https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=94656 [Accessed 2 April 2019]
Aim to capture patient’s opinion in context of his personal experience of
alongside systematic data extraction and critical appraisal performed by 2
Does patient believe the findings are relevant to them?
Does the patient feel that the patient experience is adequately reflected in the
Is the patient interpreting the results in a way that is correct?
Has the author’s interpretation missed the point, from a patient's perspective?
Patient’s Contribution to SR
https://www.uhdb.nhs.uk/service-renal-services [Accessed 2 April 2019]
Patient experience to be captured in a systematic manner, rather than
just chatting to him.
Created a form for patient to complete.
Authors doing data extraction can then analyse patient’s thoughts and
use it to assist in interpretation of the formal data extraction and
Librarian was asked her opinion/ thoughts regarding the form
made suggestions regarding numerical scale and words used
The Expert Patient Programme is a free self management course for people with a
long-term condition. (Multiple Sclerosis Trust 2018)9.
Delivered by accredited tutors; most have a long-term health condition
Course aims to give people:
Confidence to self-manage their health
To be active participants in the care of their condition.
Covers general topics e.g. healthy eating, dealing with pain & fatigue,
relaxation techniques, coping with negative feelings, etc.
Find out prior knowledge
Carryout training session at bedside
Introduction to Critical Appraisal
Looking at RCTs
Role of Librarian
Hierarchy of Evidence
"Research design and evidence" by CFCF - Own work. Licensed under CC BY-SA 4.0 via Wikimedia Commons. http://alertandoriented.com/the-devolution-of-
evidence-based-medicine/. [Accessed 2 April 2019]
Hierarchy of Evidence
Critical appraisal using CASP tools
Behind the Headlines & Fake News
How did it help you?
Background was very helpful
Helped with judging papers
Helped with assessing research motivations
No longer take research papers at face value
Do you feel you now have a greater understanding of research pitfalls?
Able to spot bias by purposeful omissions by the authors – now reading what is not being
Greater confidence to read between the lines of research and spot buried information
Other benefits being involved in research?
Motivation to learn more about treatment
Gave added dimension to his hospital visits
Interesting to see what other research projects are out there concerning patient’s condition
Other, unforeseen benefits?
Realised how good at research we are at the Royal Derby Hospital
How good we are at infection control
Follow-up with patient
Benefits to patient include enhanced information literacy skills
“……directed reading with a therapeutic dialogue or interaction between the patient and
a facilitator, often librarian, who has received special training.”
(Rani & Hemavathy 2016)11
“…a new term for supplying patients with health information, enabling them to make
informed decisions about their health and care, participate in their own well-being, and
thus decrease the utilization of healthcare resources.”
(Rani & Hemavathy 2016)11
Patient and Public Involvement
National Institute for Health Research (NIHR) - https://www.nihr.ac.uk/patients-
NIHR INVOLVE - https://www.invo.org.uk/find-out-more/what-is-public-
NICE - https://www.nice.org.uk/about/nice-communities/nice-and-the-
The King’s Fund - https://www.kingsfund.org.uk/topics/patient-involvement
Senior Clinical Educator to sit with patient - what did he feel were the
benefits of being involved in the systematic review?
Planning a publication about our patient involvement in the systematic
review - a pre-cursor to supporting methodological development of
Patient Public Involvement (PPI) for Systematic Reviews.
Authors to be the Senior Clinical Educator, one of her PhD supervisors, the
patient and the librarian.
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information therapy in reducing anxiety in patients undergoing in vitro
fertilisation treatment. Health Information & Libraries Journal, 34(1), pp.
2. Chartered Institute of Library and Information Professionals (2018). What
is information literacy? [online] Available at:
https://www.cilip.org.uk/news/news.asp?id=421972 [Accessed 30 Jan.
3. Forster, M. (2013). Information literacy as a facilitator of ethical practice
in the professions. Journal of Information Literacy, 7(1), pp.18-29.
4. Health Careers (2019). Library, knowledge and information services.
[online]. Available at: https://www.healthcareers.nhs.uk/explore-
knowledge-management [Accessed 30 Jan. 2019].
5. Health Education England (2019). Health literacy. [online]. Available at:
https://www.hee.nhs.uk/our-work/health-literacy [Accessed 30 Jan.
6. Kelham, C. (2014). Health care librarians and information literacy: an
investigation. Health Information & Libraries Journal, 31(3), pp. 235–
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health/treatments/dialysis/Haemodialysis/ [Accessed 2 April 2019].
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role of prescribed information in disease self-management. APLAR
Journal of Rheumatology 8, 69–76.
9. Multiple Sclerosis Trust (2018). Expert Patient Programme [online].
Available at https://www.mstrust.org.uk/a-z/expert-patients-
programme [Accessed 2 April 2019].
10. Health Education England Library and Knowledge Services Leads (HEE
LKSL) (2016). NHS Library Quality Assurance Framework (LQAF)
England Version 2.3a April 2016 [online]. Available at
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11. Rani, A. N. & Hemavathy, V. (2016). Information Therapy. International
Journal of Science and Research 5(1), 417-418.
12. Richards, T., Montori, V. M., Montori, V. M., Godlee, F., Lapsley, P. & Paul, D.
Let the patient revolution begin. BMJ 2013, 346, f2614.
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Pillars of Information Literacy: A Research Lens for Higher Education
[online]. Available at
[Accessed 2 April 2019]
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the role of the health librarian. Health Information & Libraries Journal,
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Partners for Progress in Health Literacy Research and Practice. Studies in
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[Accessed 30 Jan. 2019].
University Hospitals of
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Telephone: 01332 788148