Imperial College, November, 2013 Simon Collins: www.i-Base.info The role of patients acting on the social determinants of health, promoting patient rights.

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Presentation transcript:

Imperial College, November, 2013 Simon Collins: The role of patients acting on the social determinants of health, promoting patient rights and improving patient experience.

Imperial College, November, 2013 Simon Collins: The role of patients acting on the social determinants of health, promoting patient rights and improving patient experience. People taking an active role in their health in the NHS: an HIV positive perspective Simon Collins i-Base.info

Imperial College, November, 2013 Simon Collins: Andrew, Andy B, Andy C, Chris M, Chris P, Richard, Chris W, Space, Nick, Dolly, Wesley, Colvin, Jimi, Kevin, Mike, Paul, Mark, Steve.

Imperial College, November, 2013 Simon Collins: Collaborative approach is essential – from any perspective Reduce gap between clinical expertise and individual need. People should be able to receive care as partners in our own health. We are likely to have the strongest interest in staying alive.

Imperial College, November, 2013 Simon Collins: This can change over time as knowledge and information changes Limited: Doctor to decide Active: Every decision

Imperial College, November, 2013 Simon Collins: Strange situation Reliance on doctor as gatekeeper to care (treatment, health and life). Often specialised language – and potential cultural and class differences. All at a time of personal stress.

Imperial College, November, 2013 Simon Collins: Active patients can get better care: from appointments to treatment Interactions with health workers Access to treatment (choice and new medicines). Information and understanding. Shared decision making helps if future outcomes are worse.

Imperial College, November, 2013 Simon Collins: People are not always aware of these options. Many do not chose an active role. May be wrong in hindsight. Often needs confidence and persistence and to overcome fear of being a “difficult patient”

Imperial College, November, 2013 Simon Collins: Bereaved CD4 = 60 cells/mm : CD4 = 2. Cachexia, weight 45 kg Crypto/microspodia (MST 90 mg/d) Multiple OI’s: CMV in both eyes > d4T/3TC/indinavir No expectation of response.

Imperial College, November, 2013 Simon Collins: Weight increased >1kg / week Energy returned CD4 = 100: stop CMV treatment CD4 = 200 by year 2. Switched for side effects (kidney stones, lipoatrophy, toenails) and better formulations (TID> BD> QD)

Imperial College, November, 2013 Simon Collins: : people with similar experiences Volunteer phoneline: “does treatment really work?” Dr Fax, conferences, internet “every person is able to make their own treatment decisions”

Imperial College, November, 2013 Simon Collins: 3 vs 2 drugs (including research) indivavir vs saquinavir: 63 vs 43% Viral suppression > drug resistance. Use of viral load and resistance tests Long-term vs short term benefit HAART for PMTCT, d4T and lipoatrophy

Imperial College, November, 2013 Simon Collins: Medical meetings HIV Treatment Bulletin (HTB) HTB editions in S. Africa, Turkey, Balkans Treatment guides (>35 languages) Phoneline and online Q&A UK-CAB

Imperial College, November, 2013 Simon Collins:

Network of UK activists. Community Advisory Board ~ 600 members/120 organisations BHIVA guidelines and conferences Four meetings/year + online forum Language: HIV positive (not infected)

Imperial College, November, 2013 Simon Collins: “none of these drugs are for Africa” ECAB meetings (1997/8) >10 million people on ART (2013) Generics and patents (Yusef Hamied, Cipla: $10K/year to < $1 a day Second-line drugs, new drugs, etc. d4T (neuropathy, lipoatrophy)

Imperial College, November, 2013 Simon Collins:

Better drugs: more effective, easier to tolerate, less resistance Cost & access, paediatrics HCV and TB coinfections Cure research PipelineReport.org

Imperial College, November, 2013 Simon Collins: Powerful examples of where medical advances change peoples lives Powerful examples of where activism (community, health workers, politicians) show that change is possible.

Imperial College, November, 2013 Simon Collins: And the Band Played On Angels in America Blue (Derek Jarman) Fire in the Blood (Global access) How to survive a plague (ACT-UP/TAG) Philadelphia Precious United in Anger (ACT-UP)

Imperial College, November, 2013 Simon Collins: