Lizzie - Was just reading a rheumatology symposium write up. Found this, and think we can relate.
http://www.rheumatology.org.uk/includes/documents/cm_docs/2010/f/final_programme_2004.pdfBSR:
Rheumatoid arthritis from the patient’s perspective Pentland/Sidlaw
Chairs: Rod Hughes and Enid Quest
•
The patient as educator Jane Dacre
A discussion of trained patients as educators of doctors and other healthcare professionals. •
The patient as expert Kate Lorig
When one is diagnosed with a chronic disease life changes. Corbin and Strauss have identified three major management tasks for people with chronic disease;
medical management, role management, and emotional management. At the same time patients have told us that they need two types of knowledge, medical knowledge and knowledge gained from the experience of living with an illness.
Health care professionals, are experts at helping people with medical management
but are less adept at helping with role and emotional management. Patients who have lived with and managed a disease over time have much to offer each other.
This is especially true if this is done in a structured setting which allows sharing in a non judgmental atmosphere.
This talk will discuss the sharing of expert patient knowledge and will include some of the data we have collected over the years on the similarities and difference in professional and patient led groups.
•
The patient as recipient of treatment Jenny Donovan
Jenny will talk about research which shows how patients make rational and sensible decisions about the medications they take for their joint symptoms, based on the information they have available to them. She will also present evidence about how doctors and patients can have very different perceptions of issues discussed in consultations which can lead to confusion and dis-satisfaction, and also some work we have done very recently synthesising qualitative research studies which summarises the contribution that qualitative research can make to rheumatology.
• How do patients prioritise outcomes in RA Alison Carr
Clinical management is aimed at achieving a good outcome and most clinicians have an intuitive feeling for what constitutes a good outcome in their patients but this might vary between individual patients and even within individual patients over time. Definitions of good outcome from clinical trials are based on disease based measures of outcome (acute phase
response, pain) and increasingly on patient-based measures (function, quality of life) but do not take account of the ways in which patients prioritise outcomes in relation to: the stage and severity of their condition, their expectations or adaptation. This talk will present evidence of patient
priorities for outcome and discuss the implications for the ways in which outcomes are measured, analysed and interpreted.
Hmmmmm. Impressive. This is being echoed in the GP magazine 'Pulse' - and is strongly echoed on
twitter by physicians and patients, both, and on dedicated 'conditions' sites, like SAA & NASS. So, good to see this presentation - note date 2004! Been cooking a long time and still in development...
Had to smile at this one: (Good idea - but had to smile!) BSR Special Interest Groups
• arc/BSR Education SIG Carrick 2
Convenors: Lesley Kay and Andrew Hassell
The aim of the education SIG is to start a network of Rheumatology health professionals who are interested in the delivery of Rheumatology education to students and practitioners, and in educational research.
This is a joint initiative between the BSR and arc. In the first session we plan to outline current work of the arc education sub-committee and the BSR Education and Training Committee, and give some examples of current educational research.
OK Lizzie, go be proactive (as 'Pulse' would have patients do!)
