Die Gesundheitswelt der Zukunft denken

SCTO, 6th Symposium, June 17th 2015, St. Gallen Dr. Jörg Haslbeck, DrPH, MScN Program Director, Careum Research, Research Institute Kalaidos University of Applied Science, Zürich

Patient perspective: Is the promise to involve patients being fulfilled?

Dr. Jörg Haslbeck, 17.06.2015 2

«No patients, no conference!» Being involved, being on stage

See EUPATI (2015), Lucien Engelen (2013) and Mesko (2014) on BMJ „patients included“ certificate

•  Overarching ethical and political mandate for patient engagement

•  Democratization of health care – end of paternalism?

•  Growing concensus about crucial role of patient engagement

«New era of patient engagement» «The blockbuster drug of the century: an engaged patient»?

Dr. Jörg Haslbeck, 17.06.2015 3 Leonard Kosh (2015) respectively (2012); BMJ (2013);

Dr. Jörg Haslbeck, 17.06.2015 4

Continuum and areas of engagement «It has to be systemic»

Press/Richards PXJ (2015); Carman et al. Health Affair (2013: 225); Domecq et al. BMC Health Serv Res (2014)

•  Health services delivery

•  Policy

•  Professional education

•  Missing here – Research - passive (data point) - active (peer researcher)

Preparatory phase

Agenda setting Prioritization of research topics and funding

Execution phase

Study design and protocol Recruitment Data collection and analysis

Translation phase

Dissemination Implementation Evaluation

Areas of patient engagement in research Phases and patients‘ role: advisory and leadership position

Dr. Jörg Haslbeck, 17.06.2015 5 Brodt et al. PXJ (2015); Domecq et al. BMC Health Serv Res (2014); Shippee et al. Health Expect (2013); Wright (2012)

Roles •  Co-investigator and contributors •  Advisors •  Editors, co-authors and patient peer reviewers

•  Valued members of research team <> empowerment of involved patients and stakeholders

•  Enhanced patient-centred nature of project and quality of research

•  Greater comprehension of goals amongst all team members

•  Better enrolment, less attrition •  Understandable questions in instruments and

interview guides •  Additional insights for data analysis

•  More meaningful reporting, improved relevancy •  Changed translation & dissemination to new

communities in policy & practice

•  Better reach-out to vulnerable / hard-to-reach groups

Contributions and observed benefits Evidence-base still evolving

Dr. Jörg Haslbeck, 17.06.2015 6 Boote et al. Health Policy 2010); Domecq et al. BMC Health Serv Res (2014); Esmail et al. J Comp Eff Res (2015); Kreis et al. Health Expect (2013); Wright (2012)

Self-management of medication regimen in chronic illness

•  Qualitative longitudinal study (2004-2008)

•  Patient perspective at the centre

•  No PE in preparation and execution

•  Validation of findings with self-help groups

Patient and family caregiver perspectives on living with chronic conditions

•  Systematic literature search & scoping review (2013/14)

•  Growing awareness about relevance of patient view

•  Various disciplines, in particular nursing

•  Hardly PE in preparation and execution

Patient view: Yes! Total PE? Maybe…

Patient Engagement in Research Personal experience – Snapshot Swiss (Nursing) Research

Dr. Jörg Haslbeck, 17.06.2015 7 Haslbeck Public Health Forum (2010); Haslbeck (2010); Haslbeck et al. (2015, i. E.).

•  Few adverse effects •  Patient frustration with lengthy process

•  Extra time needed to complete research •  Time constraints of patients

•  Incremental funding needed

•  Worry of both researchers and patients that PE might appear tokenistic, thus devaluating the input

•  Theoretical concerns: PE might lead to irrelevant concerns and issues making research unfeasible

•  Still weak evidence-base supporting PE, no comparative data

Restraints of patient engagement in research There are barriers and obstacles, are there!?

Dr. Jörg Haslbeck, 17.06.2015 8 Domecq et al. BMC Health Serv Res (2014); Esmail et al. J Comp Eff Res (2015)

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Research agendas (i. e. SRAN) •  Moving from collaboration to true patient

engagement

Funding (e. g. SNF) •  engagement plan as part of grant application •  «easy to find/use» tools & guidelines for PE •  networks for shared learning and knowledge

synthesis

Dissemination / Journals (e. g. «Pflege») •  plain language summaries

•  PE as explicit part of manuscripts as well as guidelines for authors and referees

•  patient peer review, partnering with patients

Areas for «pushing the envelope» in Switzerland Food for thought (and maybe a personal wish list)

Dr. Jörg Haslbeck, 17.06.2015 9 Vgl. Imhof et al. Pflege (2008);

•  Focus on early adopters willing to engage patients in research

•  Use of variety of PE approaches and their heterogeneity as assets for investigating complexity in healthcare

•  Shared learning – training and resources for researchers to improve PE

•  Work in progress – but an «army of patients» is motivated to help

Patient engagement – not a «fast-selling item» Engaging patients: crucial for shift towards patient person-centred care

Dr. Jörg Haslbeck, 17.06.2015 10 Vgl. Press/Richards PXJ (2015); Wright (2012)

«Those who say it cannot be done, should not interrupt those doing it.»

Chinese Proverb

Dr. Jörg Haslbeck, 17.06.2015 11

Mehr zum Thema… … fortlaufend im Careum-Blog: http://blog.careum.ch/

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Thank you.