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Shared decision-making on Healthtalkonline

Shared decision-making on Healthtalkonline. Louise Locock Deputy Research Director Health Experiences Research Group. What is Healthtalkonline ?. Formerly known as DIPEx www.dipex.org (Database of Individual Patient Experiences)

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Shared decision-making on Healthtalkonline

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  1. Shared decision-making on Healthtalkonline Louise Locock Deputy Research Director Health Experiences Research Group

  2. 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 professionals • Partnership between DIPEx charity and Health Experiences Research Group in University of Oxford

  3. Ann McPherson, co-founder

  4. Research methods • Stand 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

  5. 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)

  6. Outputs • As well as website: • Peer review journal articles (85+ since 2001) • Conference presentations – to academic and practitioner audiences • Teaching materials • Informing policy and service improvement (e.g. NICE guidelines and quality standards; experience-based co-design; experience-led commissioning)

  7. Background on shared decision making • Department 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

  8. Methods • Re-analysis of material already on Healthtalkonline • Reviewed 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

  9. 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?

  10. SDM website • Wide variation in preference for, and experiences of, different consultation style • Strongly directive • Protectively paternalist • Supportively directive • Negotiated • Supportively self-directive • Self-directed/consumerist

  11. SDM website • No particular pattern linking type of condition to preferences for sharing in the decision or not • Can vary from time to time, in different situations, with different professionals • Importance of showing varied preferences, not one route is always best • But being unable to communicate and establish preferred approach can have serious consequences for trust, relationship, decisional satisfaction • Mismatch of expectation and perception

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