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Stakeholder Involvement in KCE Processes

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Presentation at Workshop, HTAi 2012, Bilbao (Spain)

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Stakeholder Involvement in KCE Processes

  1. 1. Stakeholder Involvement in KCE Processes Patrice Chalon24/06/2012 Piérart J., Léonard C., Chalon P., Daue F., Mertens R. Study nr 2011-73 Methods KCE Reports 174
  2. 2. KCE? 2
  3. 3. KCE? 3
  4. 4. KCE? 4 • Independent advice to policymakers on all aspects of health care and health insuranceWHAT? • Collect and analyze objective information from healthcare data, scientific literature and clinical practice • Use it to conduct scientific studies and develop expertise HOW?
  5. 5. Life cycle of a KCE report Pre- project fiche (PPF) Project fiche Start of procedures meetingexperts meetingexperts meetingexperts Pre-report validation Report Publication report on website; Press release Validation byBoard Workprogram Accepted byBoard Study proposal Evaluation byKCE Identify team (int or ext) ; if external : Public call for tender
  6. 6. Rationale  Already part of KCE’s research, BUT not systematic or diversified  Policy challenge relevant - unambiguous - realistic  Scientific challenge openness - scientific rigor and objectivity 6
  7. 7. Results 1. Key principles Literature & International comparison 2. Current experience at KCE Discussion groups with all experts 3. Strategic objectives 7
  8. 8. Key principles – Who? 8  Stakeholders are those who o are affected o have interests o are able to influence
  9. 9. Key principles – Why? 9  General objectives o openness o transparency  Specific objectives o gathering information (relevant questions - unambiguous results - realistic recommendations) o identification of controversy
  10. 10. Key principles – How? 10
  11. 11. Key principles – How? 11
  12. 12. Key principles – How? 12  Skills o Trustworthiness and respect o Own involvement o Openness; ‘perplexity’ o Objectivity and fairness o Leadership and support
  13. 13. Current experience at KCE Learnings 1. Longstanding practice 2. Involvement of Board 3. Involvement of Communities 4. To be understood by... 5. Stakeholders vs experts Requests 6. Independence is a priority 7. Clear distinction to include in the report 8. Training 9. Evaluation of impact 10.Knowledge base of Stakeholders Opportunities 11. Motivations of SH involvement 12. Adaptation to each project 13. Several levels of involvement are possible 14. Key values are crucial 15. Steering committee 16. EMA and citizen’s panel Fears 17. Timing is an obstacle 18. Patient’s involvment is the most difficult 19. Ready to share all information? 13
  14. 14. Strategic objectives 1.Make subject tangible 2.Get scope and research questions right 3.Gain acceptance of methods 4.Reach realistic answers 5.Get effective communicati on channels Policy makers / Institutions Payers Patients Health care profesionals Industry Academics Press 14
  15. 15. Strategic objectives Stakeholder involvement approaches 1.Make subject tangible 2.Get scope and research questions right 3.Gain acceptanc e of methods 4.Reach realistic answers 5.Get effective communi cation channels Search press + + On-site visits K + Individual interviews ‘typical’ stakeholders K K + + Individual interviews key informants + K + K Focus groups K + x Discussion forum K K K Delphi methods  +  + Scenario Building Exercise  +  Consensus conference  +  + Deliberative polling   Online discussion groups/list servers  + Survey (Web, telephone, paper self-administered, ...) K + Use of social media +  + + Workshop + + K + 15
  16. 16. Strategic objectives APPROACH 1 – On-site visits to healthcare providers or institutions Example(s) KCE Reports 20 [Molecular Diagnostics in Belgium], 2005 KCE Reports 46 [Home Monitoring of Infants in Prevention of Sudden Infant Death Syndrome], 2006 Objective Make the subject tangible (with the focus on the clinical and practical aspects). Timing At the onset of the project. Who to involve? Providers/healthcare institution currently using the technology (HTA) or providing the service (HSR) under study, or caring for the condition covered by the guideline. Selection Not necessarily via representative organizations; rather via personal contacts; look for large-volume centres and quality- conscious providers. Level of involvement Information of the researchers. Motivation Avoiding a purely theoretical stance. Desired output Good grasp of the concrete (clinical) practicalities of a technology, service or diagnostic or therapeutic approach, including the regulatory/financial particularities (if debatable). Appropriate format Non-interfering observation of the actual clinical processes, alternated/followed by discussion with the providers and (if needed and feasible) with patients. In any case, informed consent is to be obtained from the patient. Ideally, all researchers involved in the study should participate. In practice, at least those involved in the editing of the discussion and conclusions. Duration ½ to 1 day. Prior information need Stakeholders need little prior information. Researchers could benefit from prior acquaintance with the technology, medical condition, jargon, regulatory framework. Preparatory material None, or a set of remaining questions after preparatory reading work. Deliverable Brief description of the meeting (who, when , where), no other specific deliverable; an introductory chapter of the final study report, describing the problem, technology or service, may benefit from the personal observation notes of the researchers. Follow-up In principle not applicable. Level of controversy In theory, out of scope for this method; in practice, the very fact that the researches belong to the KCE may create specific perceptions among the providers, and bring out potentially controversial aspects during the visits. Hence, the nature of the visit, its objectives and the function in the project should be made very clear. Confidentiality All observations, and, a fortiori, all patient-related information should remain strictly confidential. Limits As representativity is not aimed for, the observations of the researchers cannot be considered to be formal results, and do, as such, not appear in the study report. Risks of the method Perception bias and preconceptions in the researcher, based upon a very limited, but potentially strong personal experience. This could require to express these potential preconceptions and test them with other actors, preferentially with opposing views. How to evaluate? Absence of signals that “researchers do not really know what they are talking about” or similar suggestions. 16 APPROACH 1 – On-site visits to healthcare providers or institutions Example(s) KCE Reports 20 [Molecular Diagnostics in Belgium], 2005 KCE Reports 46 [Home Monitoring of Infants in Prevention of Sudden Infant Death Syndrome], 2006 Objective Make the subject tangible (with the focus on the clinical and practical aspects). Timing At the onset of the project. Who to involve? Providers/healthcare institution currently using the technology (HTA) or providing the service (HSR) under study, or caring for the condition covered by the guideline.
  17. 17. Next steps Process notes 17 Trainings
  18. 18. 18 THANK YOU!

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