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Information about Andrew

Published on February 19, 2008

Author: Lassie


Slide1:  Tapping into patients’ experiences of illness Andrew Herxheimer What I’ll talk about:  What I’ll talk about How we began Who we are, our aims What we do, how we do it Modules on the site, modules in progress Future plans How it began:  How it began At a medical sociology conference in 1995 Ann McPherson & I were struck by how little interest doctors take in individual patients’ experiences. She had had breast cancer, I had had a knee replacement; each of us had learnt a lot that was not known or not recognised. We thought it wrong not to learn from these experiences, and to lose them for ever. So we decided to try to collect them systematically. The DIPEx team:  The DIPEx team Andrew Herxheimer clinical pharmacologist co-founder Ann McPherson GP co-founder, medical director Rachel Miller GP and health services researcher Sasha Shepperd lecturer in general practice Sue Ziebland medical sociologist research director Alison Chapple, Suman Prinjha, Carol Dumelow, Julie Evans, Kate Field, Maria Salinas, Jane Carter, Damien Ridge, qualitative researchers* Jane Williams programme administrator* Ruth Sanders, Paul Merry website team* Francie Smee research secretary* * full time What DIPEx is:  What DIPEx is a database of patients’ experiences presented as video, audio, and /or text each disease module is separate and based on a stand-alone qualitative research project the interviews are linked to reliable information about the illness itself, its management and effective treatments, patients’ FAQs, and links to other resources Who it is for::  Who it is for: patients at all stages of their illness journey their families and friends teachers health professionals policy makers researchers Aims - 1:  Aims - 1 to identify the questions and problems that matter to patients when they are ill or have a health related problem to offer support and information to patients, their family and carers Aims - 2:  Aims - 2 to be an educational resource for medical students, doctors in training, nurses and other health professional to promote a more balanced encounter between patients and health professionals to provide a patient-centred perspective to researchers, managers and commissioners of services DIPEx website :  DIPEx website Analysis of a broad range of people’s narrative descriptions of their experiences Linked to evidence based information about treatments, resources, support groups Overlapping information needs - presented for patients, family, teachers, students, health professionals, policy makers, researchers DIPEx database : Narratives:  DIPEx database : Narratives summaries of main themes from interviews illustrated with video, audio and written clips from the interviews – people telling their stories DIPEx database : Evidence:  DIPEx database : Evidence descriptions of the condition, prevalence, prevention information about treatments, including evidence of effects questions and answers All indexed and searchable DIPEx database: Links:  DIPEx database: Links links to other websites, e.g. Cochrane Library, National electronic Library of Health British National Formulary, literature Support groups and voluntary organisations Interview methods:  Interview methods Literature and field review ‘maximum variation’ sample - widest practicable range of UK experience (from 1ry & 2ry care, and support groups) interviews at home, experienced qualitative researchers – one to two hours or more illness narrative + semi-structured interview digital video and audio recording Analysis and presentation:  Analysis and presentation Transcripts from interviews are annotated Categories include anticipated and emerging themes More interviews collected until analytic categories are saturated Brief summaries present themes in accessible language, illustrated with clips Consent procedures:  Consent procedures Research Ethics Committee approval Two stages of consent before interview - consent to video or audio taped interview after interview - copyright form for deposit of interview with DIPEx All names and identifiers removed How patients are involved:  How patients are involved whole site is based on patients’ experiences advice is obtained from relevant patient support groups patients are on the advisory panel for each module informal feedback and evaluations the Steering Group includes a patient Completed modules :  Completed modules High blood pressure prostate cancer breast cancer bowel cancer testicular cancer cervical cancer cervical screening epilepsy parents of children with congenital heart disease Modules in progress :  Modules in progress rheumatoid arthritis heart failure ovarian cancer living with dying breast screening depression chronic pain antenatal screening carers of people with dementia sexual health of young persons teenage cancer pregnancy Evaluation with patients:  Evaluation with patients Breast cancer focus groups in London and Glasgow Prostate cancer focus groups in Manchester, Newport Individual interviews / trial use of DIPEx Development as a teaching tool:  Development as a teaching tool Pilot with fast track medical students Pilot with GP trainers and course organisers Communication skills – foreign nursing staff Pilot use in Open University course for health workers on 'Knowledge, Information & Care' Customised teaching resources:  Customised teaching resources Learners’ toolkit to use with DIPEx website Customised analysis of DIPEx interviews on the whole patient journey e.g. the decision to visit the GP, experience of hospital outpatients, waiting lists, post-operative pain management, seeking information, and many more Resources to be available online or as DVD Exploiting DIPEx research resources:  Exploiting DIPEx research resources Now over 800 individual patient interviews, with permission for use in broadcasting, teaching and research 10 new illness collections in progress (40-50 patients in each) digital video, audio and written transcripts covering all stages of the patient journey up to date evidence-based information, Q&As a major teaching resource for all NHS staff the full data set can be analysed further for academic papers and reports Other modules planned (aim:100 in 5 years):  Other modules planned (aim:100 in 5 years) Teenage DIPEx asthma diabetes children whose parents have cancer Adult DIPEx leukaemia sickle cell & thalassaemia endometriosis HRT Parkinson’s disease motor neurone disease immunisation other mental health modules participation in clinical trials Costs and funding:  Costs and funding Each module now costs £~110,000 (13 months) funding sources: DoH, Macmillan, Cancer Research UK, British Heart Foundation, Citrina Foundation, Warburg Foundation, ARC, individual donations Information support from partner organisations (Cancer BACUP/British Heart Foundation) Individuals’ time given free, e.g Jon Snow (patron) John Peel, Jenni Murray, help and advice from the trustees of the DIPEx charity, pro bono help from other professionals Future: Collections across Topics:  Future: Collections across Topics Bereavement Participation in clinical trials The illness experiences of health professionals Experiences of using medicines; adverse effects An ill child’s v. a parent’s experience Gender differences Ethnic & cultural differences Ominous words that people use Future: Other cultures and languages:  Future: Other cultures and languages People in different cultures need their own stories Comparisons between cultures will give new insights and aid mutual understanding We need an international DIPEx network analogous to the Cochrane Collaboration Accounts of DIPEx published in German, Italian, Japanese, Spanish, Chinese Future: :  Future: Illustrating Cochrane Reviews with narrative clips describing patients’ experiences of the interventions Can enliven dry science and link it to everyday reality Pilot Examples: chemotherapy for metastatic colon cancer; tamoxifen for advanced breast cancer A challenge for medical science::  A challenge for medical science: We must integrate ‘scientific’ and experiential findings – quantitative and qualitative data describe different dimensions of the same phenomena. A slogan for the future: No numbers without words! Papers etc – 1 :  Papers etc – 1 A Herxheimer & al. DIPEx: a multi media approach to sharing experiences and information. Lancet 2000;355:1540-43 (updated versions in other languages) J Yaphe et al. How do self-help groups use patients’ stories? Health Expectations 2000;3:176-81 A Chapple et al. Is ‘watchful waiting’ a real choice for men with prostate cancer? Br J Urol Internat. 2002;90:257-64 A Chapple et al. Why men with prostate cancer want wider access to PSA testing. BMJ 2002; 325: 737-9 A Chapple et al. Prostate cancer: embodied experience and perceptions of masculinity. Sociol Health Illness 2002; 24:820-41   Rozmovits L, Ziebland S. Expressions of infantilisation in narratives of colorectal cancer patients. Qual Health Res in press A Chapple et al. The decision to have a prosthesis: a qualitative study of men with testicular cancer. Psycho-oncology in press Rozmovits L et al. What patients with prostate or breast cancer want from an internet site - their information needs. Patient Education and Counselling in press Rozmovits L, Rose P, Ziebland S. In the absence of evidence who chooses? A qualitative study of patients’ needs after treatment for colorectal cancer. Journal Hlth Serv Res and Policy in press   Papers etc – 2:  Papers etc – 2 Rozmovits L, Rose P, Ziebland S. In the absence of evidence who chooses? A qualitative study of patients’ needs after treatment for colorectal cancer. Journal Hlth Serv Res and Policy in press Ziebland S The importance of being ‘expert’: how men and women with cancer use the Internet. BSA Medical Sociology Conference, Sept 2002. Rozmovits L, Ziebland S. Expressions of infantilisation in narratives of colorectal cancer patients. Qual Health Res in press Chapple A, Ziebland S. Prostate cancer: embodied experience and perceptions of masculinity. Sociol Health Illness 2002; 24:820-41 Chapple A, Ziebland S. ‘I take the piss out of life, because it's the only way to get through it’: what jokes do for men with testicular cancer. BSA Med Sociology Conference, Sept 2002. Herxheimer A. Factoring in the patient – proposal for a third dimension in trial design. CERES News 2003; issue 33: 1-3. Herxheimer A. Illustrating Cochrane Reviews with narrative clips describing patients’ experiences of the interventions. 10th Cochrane Colloquium, Stavanger, August 2002 Cheshire J et al. A double partnership: between discourse analysts and DIPEx, and patients and providers. Br Assoc of Appl Linguistics, Cardiff, Sept 2002   AWARDS:  AWARDS Winner – Medical Social Innovations award, 2001 Finalist – IT Healthcare Effectiveness Awards, 2002 Short listed – Health Information Award, 2003 More information:  More information The Website: and DIPEx, Institute of Health Sciences Oxford OX3 7LF Tel + 44 (0) 1865 226672 e-mail:

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