Background New healthcare programmes that focus on the encounter between patients and healthcare services,
such as those advocated for in different forms on “centredness”, are being pushed to the forefront of the healthcare
agenda to, amongst other goals, combat rising costs. However, lack of consensus regarding which outcomes should
be evaluated to cover the needs of all stakeholders creates barriers to prioritising between competing alternatives.
The aim of this research was to develop a core outcome set (COS) for the evaluation of new healthcare programmes
adopting centredness within the encounter between patients and healthcare services.
Methods A COS was developed according to the Core Outcome Measures in Effectiveness Trials guidelines,
using the DelphiManager online platform. A list of outcomes was collected from literature, stakeholder group
representatives and patient partners. The outcomes underwent a two-round modified Delphi method with
representative groups including managerial decision-makers, researchers, health workers, and patients/patient
representatives. Outcomes scored 7–9 (critical) by 70% or more participants and 1–3 (limited importance) by no more
than 15% were deemed to have reached consensus at the conclusion of round two. The COS was finalised during the
consensus meeting, conducted with patient partners and written input from stakeholder representatives.
Results An initial list of 65 outcomes from literature were refined to 51 items at the end of the pilot phase. At the
completion of round two, eight outcomes had been scored critical by all stakeholder groups. A further 28 outcomes
scored critical by at least one stakeholder group were included during the consensus meeting. The COS included
36 outcomes divided into six categories, i.e., general health, capabilities and support systems, care processes,
organisational, economics, and eHealth.
Conclusion This was a first attempt at developing a COS for new healthcare programmes that adopt centredness
within the encounter between patients and healthcare services, resulting in 36 outcomes divided into six categories
judged critical by many of the included stakeholders. While providing a first step towards understanding stakeholder
needs for implementing or participating in these healthcare programmes, variation between groups highlights the
difficulties in allocating resources and attributing value to healthcare programmes practicing centredness.
Benjamin P. Harvey, Emmelie Barenfeld, Joakim Öhlén, Jana Bergholtz, Carl Johan Orre, Tomas Lindroth and Hanna Gyllensten
Disease Category: Effective practice/health systems
Disease Name: N/A
Age Range: Unknown
Sex:
Nature of Intervention: N/A
- Clinical experts
- Consumers (patients)
- Patient/ support group representatives
- Researchers
- Service providers
- COS (Other)
- Consensus meeting
- Delphi process
- Interview
- Literature review