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. 2021 Mar 6;5(4):e12488. doi: 10.1002/rth2.12488

TABLE 1.

Overview of the process of standard set development

Meeting dates Working group Meeting objectives
Jul 19, 2018 Core and steering group a
  • Introduce HaemoValue project

  • Value‐Based Health Care education

  • Define medical condition

(1) Oct 15, 2018 Core and steering group
  • Define medical condition and patient group

  • Discuss long list of health outcomes

(2) Dec 20, 2018 Core and steering group
  • Discuss short list of health outcomes

  • Discuss long list of risk‐adjustment variables

(3) Jan 21, 2019 Patients and Health Care Professionals Panel b
  • Review and discuss short list of health outcomes

(4) Feb 12, 2019 Core and steering group
  • Review short list health outcomes and definitions

  • Discuss short list risk‐adjustment variables

(5) Mar 11, 2019 Patients and Health Care Professionals Panel
  • Review and discuss short list of risk‐adjustment variables

(6) May 6, 2019 Patients and Health Care Professionals Panel
  • Finalize international set of health outcomes

  • Select most relevant risk‐adjustment variables

(7) May 20, 2019 Core and steering group
  • Discuss final international set of health outcomes and definitions

  • Discuss final list of risk‐adjustment variables

(8) May 27, 2019 International Academic Council c
  • Review of HaemoValue process and methodology

  • Review of prefinal international set of health outcomes

  • Comment on value of international standard set of health outcomes

(9) Jun 17, 2019 Patients and Health Care Professionals Panel
  • Review final international set of health outcomes and risk‐adjustment variables

a

The core group consisted of four epidemiologists and hematologists and two patient representatives; the steering group consisted the core group and an additional eight hematologists, a nursing specialist, a representative from the World Federation of Hemophilia, and two patient representatives.

b

The Patients and Health Care Professionals Panel consisted of 17 hemophilia care professionals of eight different disciplines and 15 patient representatives, including persons with hemophilia, parents of children with hemophilia, and female carriers of hemophilia.

c

The International Academic Council consisted of two hematologists, a gynecologist, a nursing specialist, a physiotherapist, a public health expert, and a value‐based health care expert.

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