Patients' Perspectives of the Doctor- patient Relationship and Information Giving within the Health Context Adrienne Shaw, London South Bank University Gill Rowlands, London South Bank University Saima Ibrahim, London South Bank University Fiona Reid, St George’s University of London Michael Ussher St George’s University of London

2 Background 1 Effective communication is an essential element of patient care Less effective communication can lead to poorer health outcomes The ability to read understand and act on health information is increasingly important in the current context of health care

3 Background 2 Literacy levels in the UK are similar to the US with a prevalence of low literacy at 16% in the UK [1] and 14% in the US [2] Health Literacy (HL) is defined as ‘the capacity of individuals to obtain, process and understand basic health information and services needed to make appropriate health decisions’ [3]

Background 3 Low Health Literacy (HL) is a risk factor for poor health Little research on HL in the UK Few studies have examined the patient perspective

5 Objectives To study patients’ experience of doctor- patient communication and information giving in health care. To explore the view of patients with a range of literacy levels

6 Method 1 Setting; inpatient cardiology unit in London Sample; 321 patients aged over 18 admitted for investigations 64% male, mean age 64 years, 89% white Part of a wider study on HL in the UK

7 Method 2 Interview Stage 1 Quantitative US and UK based literacy screening tools Health behaviours questionnaire Stage 2 Qualitative (this study) Open ended questions about communication and information giving Thematic analysis

8 Results 1 22% of the sample found to have a low level of literacy Emergent themes Transmission of information Interaction with health professionals Patient self efficacy Use of language and terminology

9 Results 2 Transmission of information Leaflets ‘I’m a bit laid back back I suppose, I wouldn’t read a leaflet unless I was given it’ Pt 175 male age 56, AHL ‘There’s too much jargon (in health leaflets) they’re not written for lay people’ Pt 243 female age 51 LHL ‘ I’d like something like an ‘idiot’s guide’ to health problems’ Pt 73 male age 59 AHL ‘ I prefer to hear straight from the horse’s mouth’ Pt 65 male age73 AHL ‘..there was an information leaflet I saw, about diabetes and frightening statistics with photos of amputations and leg ulcers’ Pt 167 male age 59 AHL ‘I think leaflets worry you’ Pt 151 female age 78 AHL

10 Results 3 Transmission of information internet as a source discussion with doctors ‘ I don’t think the internet’s good for health, there’s too much information it’s a bit scary’ Pt 90 male age 46 AHL ‘ I wouldn’t use the internet (for health), I wouldn’t trust the information’ Pt 131 female age 74 AHL ‘ patients have to ask for information some doctors don’t tell you much’ Pt 162 male age 61 AHL ‘some doctors don’t speak clearly and too fast and accents can be difficult’ Pt 239 male age 80 AHL

11 Results 4 Transmission of information Interaction with doctors ‘my GP is shall I say not charismatic he’s got a poor bedside manner and doesn’t respond to questions’ Pt 135 female age 74 AHL ‘The personal contact is so important but I do find some doctors don’t listen to the patient’s view’ Pt 303 male age 64 AHL ‘some doctors talk down to patients, I think attitude is really important if they are friendly and relaxed it helps’ Pt 282 female age 63 AHL ‘having time with my doctor is important, I like an informal chat’ Pt 268 male age 72 LHL ‘I’d like more time with the doctors to explain things. At the moment its on a ‘need to know’ basis’ Pt 325 male age 74 AHL ‘ GPs need to be more sympathetic’ Pt 174 male age 68 LHL

12 Results 5 Patient self efficacy ‘it’s the patient’s responsibility to know about their condition and to communicate with doctors’ Pt 293 male age 46 AHL ‘patients should help themselves and learn more about health’ Pt 317 male age 73 AHL Patient self efficacy ‘doctors and nurses should encourage patients to read more health information and be more involved in their care’ Pt 282 female age 63 AHL ‘they should take time to explain in detail but sometimes the treatment or advice is not followed because its importance is not stressed’ Pt 313 male age 45 AHL ‘I prefer not to know…I’d rather leave it to the doctors they are the experts...a little knowledge can be dangerous’ Pt 291 male age 81 LHL

13 Practice implications Face to face most valued method of communication Time is needed for face to face communication, especially for complex disorders Internet is a useful potential resource but patients may need support to use it May be helpful to develop additional ways of transmitting information such as audiovisual (DVDs MP3 files, mobile texts etc)

14 Conclusions If patients are to be actively engaged in healthcare decision making, healthcare professionals need to work in partnership with patients to build patient knowledge and self- efficacy Practitioner time is still seen as the most effective way to communicate The most common way of transmission of additional information (leaflets) is still unsatisfactory for some Transmission of information needs to be tailored to patients’ information and literacy needs.

References 1 Williams, J., Clemens, S., Oleinikova, J., Tarvin, K. The skills for life survey: A national needs and impact survey of literacy, numeracy and ICT skills. Department of Education and Skills Research Report 490. Her Majesty’s Stationary Office, London. [Available online]: 2 Kutner, M., Greenberg, E., Jin, Y., Boyle, B., Hsu, Y. and Dunleavy, E. Literacy of everyday life: Results from the 2003 National Assessment of Adult Literacy (NCES ). U.S. Department of Education. [Available online]: 3 Selden, C.R., Zorn, M., Ratzan, S., Parker, R.M. Health literacy. Current bibliographies in medicine; no Bethesda, MD: National Library of Medicine; 2000

16 Acknowledgements This study was funded by STaRNet London Thank you