Patient Reported Outcome Measurements Working Group: How to define the “best outcomes” for patients in order to support innovation projects and value-based healthcare systems?

Hervé Michel, Robert Picard, Jean-Marc Bourez

This working group will not only highlight the added value of Living Labs and Test beds on the definition and implementation of PROMs, but will also contribute, in association with the EIT Health High Value Care Forum, to paving the way towards successful EIT Health innovative projects.

Patient reported outcome measures (PROM) can be defined as quality indicators of healthcare from the patient’s point of view (Minvielle et al, 2019).

This is a key issue for both the success of innovation projects and the development of value-based healthcare systems in Europe.

For innovation projects, the identification of the best outcomes for and by patients is essential to the implementation of the solution by end-users and market development.

In current healthcare systems, PROMs appear as key and central dimensions for the development of value-based healthcare in Europe, as healthcare delivery and value should be driven by outcomes that truly matter to patients (EIT Health, 2020). PROMs aim to contribute to the improvement of healthcare quality; the comparison of hospitals and healthcare systems; payment on performance; the standardisation of healthcare delivery at international level; and personalised healthcare services.

Over the last 20 years, extensive work on PROMs has been conducted and implemented all over the world by national health systems, hospitals, and academic, research (ICHOM) and international (OECD) organisations.

Taking into account patient points of view and translating them into measurable outcomes that make sense to them remains a challenge.

The voice of Living Labs and Test Beds organisations has not yet been heard on this strategic topic, even though the core and specific added value of Living Labs and Test Beds is to engage with end-users and to ensure that healthcare services are useful and motivating from the point of view of the end-users.

First-hand experience and best practices on PROMs from EIT Health Living Labs and Test Beds will be shared and discussed through a working group organised within the EIT Health LL&TB programme and opened to EIT Health and non EIT Health members.

This working group will present how the EIT Health Living Labs and Test Beds can be mobilised to contribute to a better definition and implementation of PROMs to support innovations projects and development of value-based health care in Europe.

Objectives

This working group will be organised around presentations of concrete experience of PROMs by EIT Health Living Labs and Test Beds, enriched with contibutions from academics and international value-based healthcare experts, with the following objectives:

1. To present how Living Labs and Test Beds are in ideal position to utilise their engagement with end-users (patients/elderly people) for PROMs
2. To understand from the perspective of Living Labs and Test Beds what a PROM is: how do they use PROMs, in which context, with what results, and what is the specific value of LL and TB in PROMs?

• Why: What are the objectives and interests at stake associated with PROMs? Which objectives are specifically within the scope of Living Labs and Test Beds activities?
• What: what are the different ways of addressing these issues and measuring PROMs & PREMs?
• How: How do Living Labs and Test beds use these PROMs and PREMs in innovation projects, with what results and added value? Concrete examples and cases from EIT Health Living Labs and Test Beds

1. To highlight how patient-related outcome/ experience measurements can be translated to value-based healthcare across Europe: how can Living Labs and Test Beds contribute to this process ?

Organisation: MADoPA, Forum LLSA, French CLC, EIT Health Headquarters

Selection process of the LL&TB : see below detail of the call for participation

Calendar and content of the working group: 4 online two-hour sessions

• 1^st session: 13 November 10 am-12 pm

1. Introduction: Hervé Michel, MADoPA and Robert Picard, Forum LLSA
2. Presentation of notions of PROMs and PREMs: Dominique Pougheon, Sorbonne University Paris Nord
3. Case study: what conditions need to be met in order for stakeholders and patients to have trust in PROMs and PREMs? Feedback from Calydial, France

• 2^nd session: 27 November 10 am-12 pm

1. Case study: Why is it important to develop PREMs from a hospital perspective? The example of Hospital University Basel, Switzerland
2. Case study: PROMs for patients and health professionals, the example of self-management of patients with kidney transplantation, Innovation Skane, Sweden

• 3^rd session: 9 December 10 am-12 pm

1. Case study: PROM supported by metrology expertise, the example of Innov Autonomie, France
2. Case study: PREM in EIT Health innovation projects: feedback from the RW4C project applied to monitoring of cardiac insufficiency, MADoPA, France

• 4^th session: 18 December 10 am-12 pm

1. Case study: e-PROM for patients, the example of Mask-air, an app for the monitoring of allergic rhinitis, Kyomed, France
2. Round table with two international experts: what utility and added value of PROMs and PREMs in EIT Health projects and High value care strategy?

Provisional speakers: Dr. Christina Ackerman, ICHOM,Pr. Etienne Minvielle, Ecole Polytechnique, France,  and Dr. Jorge Fernandez, EIT Health

Information & Registration: by email to

herve.michel@madopa.fr , jerome.fabiano@eithealth.eu and robert.picard@forumllsa.org

Outcome

Deliverable: Living Labs best practices PROM report (challenges, positioning, methodologies, results, added value)                                                                                                                                                                                    Delivery date: January 2021

Participants

• EIT Health Living Labs and Test Beds (free)
• EIT Health partners (reduced fees in France*)
• Non EIT health partners (fees**)

*€2,500 for EIT Health partners (mainly covered in France by French CLC)

• €2,000 of co-funding from French CLC and €500 for Core French Partners
• €1,500 of co-funding from French CLC for French associate partners and €1,000 for associate French Partners

**€3,000 for non EIT Health stakeholders

References

EIT Health (2020), Implementing Value-Based Health Care in Europe: Handbook for Pioneers (Director: Gregory Katz

Minvielle E et al. (2019), Des enquêtes de satisfaction aux patients reported outcomes: histoire des indicateurs de qualité du point de vue du patient et perspectives, Risques & Qualité, Vol. XVI, n°4, pp 225-232