Louise LocockDeputy Research Director

Health Experiences Research Group

What is Healthtalkonline?Formerly known as DIPEx www.dipex.org

(Database of Individual Patient Experiences)Award-winning websites www.healthtalkonline.org

and www.youthhealthtalk.org Based on qualitative research studies of health

experiences (now ~ 60 conditions covered)Free to patients and the public, families, health

professionalsPartnership between DIPEx charity and Health

Experiences Research Group in University of Oxford

Research methodsStand alone qualitative interview studies (40-50

interviews throughout UK per collection)

Diverse/ maximum variation sample (different experiences, and different types of people – class, ethnic group, age gender)

Interviews at home - unstructured ‘tell me your story’ followed by semi-structured sections

Digital video and audio recorded

Analysis and selection of interview clips for website

Transcripts from interviews read and coded by theme, using computer software

Themes include anticipated and emerging issues

What’s important to patients

25 summaries on website on key themes, in easy to understand language, illustrated with clips (200-250 each condition)

OutputsAs well as website:

Peer review journal articles (85+ since 2001)Conference presentations – to academic and

practitioner audiencesTeaching materialsInforming policy and service improvement (e.g.

NICE guidelines and quality standards; experience-based co-design; experience-led commissioning)

Background on shared decision makingDepartment of Health project with Patient

Experience and Public Engagement Team, with TV HIEC

To improve understanding, interest and support for shared decision making among patients and clinicians working in the NHS

MethodsRe-analysis of material already on

HealthtalkonlineReviewed clips on 30 of the 60 conditions

currently on the website long term conditions (eg diabetes, chronic pain)elective treatment choices (eg hip replacement)life-threatening illness (eg cancers)Decisions for others/involving values

(termination, relative in intensive care)Over 1000 extracts analysed by theme

SDM website under ‘improving care’Eight theme summaries:

What is shared decision making? Why do people want to be involved in SDM?Why do people sometimes not want a decision to be shared? Different types of patient/ doctor relationships Different types of decisions, settings and participants What information needs to be exchanged? Decisions involving values and difficult personal choices What might go wrong when decisions are not shared?

SDM websiteWide variation in preference for, and

experiences of, different consultation styleStrongly directiveProtectively paternalistSupportively directiveNegotiatedSupportively self-directiveSelf-directed/consumerist

SDM websiteNo particular pattern linking type of condition to

preferences for sharing in the decision or notCan vary from time to time, in different situations,

with different professionalsImportance of showing varied preferences, not

one route is always bestBut being unable to communicate and establish

preferred approach can have serious consequences for trust, relationship, decisional satisfaction

Mismatch of expectation and perception