Patient Engagement Synapse

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I have been a patient advocate for almost 20 years. I am a severe asthma patient. I have worked on: - developing guidelines on asthma and COPD, asthma in children, multidisciplinary guideline for asthma, EAACI Allergen Imunnotherapy - AIT guideline for clinical practice - developing standards of care an patients versions of the standards of care for asthma - ERS CRC Severe Heterogeneous Asthma Research collaboration, Patient-centred (SHARP) patient co-chair (2017 - ) - “RAAK-hay fever project.” A project on how to individualise hay fever projections. (HS Leiden, Generade, LUMC, Naturalis, LIS, TNO project) (2017- ) - “myAirCoach. Analysis, modelling and sensing of both physiological and environmental factors for the and predictive self-management of Asthma”, (Horizon 2020 project) (2015 - ) - “Sarcopenia and Physical fRailty IN older people: a multi-componenT Treatment Strategies” SPRINTT- project (IMI project) (2015- ) - ERS task force Severe Asthma and severe exacerbations, (ERS project) (2015- ) - “VIMP to support implementation of AdViSHE”. (ZonMw project) (2016- ) - “Assessment of the Validation Status of Health Economic decision models as part of Disease models used for decisions on expensive drugs: a new instrument to enable structured model assessment.” (AdViSHE)(ZonMw project)(2011 – 2015) “Husbandry and health” Dutch research project on the health effects of husbandry on the people living in the area (a ministry of Health RIVM, TNO project) (2014 - 2017) - Unbiased BIOmarkers in PREDiction od respiratory disease outcomes (UBIOPRED) IMI project (2008 - ) Patient reviewer for BMJ. Patient member of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) and their Patients Representatives Roundtable. EUPATI fellow. Frequent speaker and organiser of workshops at conferences and meetings, Publications: - Van Voorn et all, The missing stakeholder group: Why patients should be involved in health economic modelling, Appl Health Econ Health Policy, DOI 10.1007/s40258-015-0200-7 - Van der Scheer et all, E-health technologie in het gebruik. Kritische vragen bij gegevensbescherming en ontwerp, Tijdschrift voor gezondheidszorg en ethiek, 2016, jaargang 26, nr. 3 - Hamerlijnck D., The importance of patient involvement in clinical trials, to be published in the ERS RED book for , ERS 2017 conference - Hamerlijnck D., Teunissen G.J., Why involve patients as stakeholders in health economic moddeling?, to be published.

Organizations

Dutch Lung Foundation LED-group

Healthy lungs and against lung diseasesTo promote research into lung diseases, medicine development and local contact with patients. Patients are involved in setting the research agenda, evaluating the research applications and advising on which applications should be funded. We are a group of patient advocates that are part of many research projects in the Netherlands and EU on lung diseases .

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Initiatives

  Patient engagement in the selection and development of clinical outcome assessments (COA)

Evidera, Boehringer Ingelheim, PFMD ,
+ 12

Global

Completed less than one year ago

Resources

THE IMPORTANCE OF PATIENT INVOLVEMENT IN CLINICAL TRIALS - Article

28 May 2018

Patients and public are important stakeholders in health technology assessment but the level of involvement is low – a call to action

13 Jan 2021 Publication

Commitments

Dominique Hamerlijnck

Patient advocate/experience expert

I will listen to my fellow patients and try and put forward their needs, questions, wishes and opportunities in as many places and to as many people as possible.

Work in progress
Dominique Hamerlijnck

Patient advocate/experience expert

I will work together with others to create dialogue on an equal basis, each with our own expertise to create a new reality where patients are an integral part of co-creating the future in care, medicine, medical devices, HTA, CEA and wherever else it is needed or necessary.

Work in progress
Dominique Hamerlijnck

Patient advocate/experience expert

I will engage, inform, empower as many patients as I can to take part in all initiatives where we are asked to participate and will try and get patients involved where the patient voice is not yet heard.

Work in progress