Evidence map›Paper›PMID 38629481›Full record

ArticleHealth expectations : an international journal of public participation in health care and health policy2024

Insights and recommendations for working collaboratively and improving care in Alzheimer's disease: Learnings from the Finding Alzheimer's Solutions Together (F.A.S.T.) Council.

Jannice Roeser, Nikki Bayliss, Marco Blom, Ruth Croney, Lydia Lanman, Jerson Laks, Marco Lyons, Lea Proulx, Marianna Tsatali, Karin Westerlund and 1 more

Abstract read
In one paragraph

Article in Health expectations : an international journal of public participation in health care and health policy, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

2 citing papers in PubMed.

  1. Making Room for Every Voice: Reimagining Person-Centred Care in the Neurosciences.Health expectations : an international journal of public participation in health care and health policy · 2025
    Article
  2. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

11 authors.

Jannice RoeserF. Hoffmann-La Roche Ltd, Basel, Switzerland.
Nikki BaylissAlzheimer's Disease International, London, UK.
Marco BlomAlzheimer Netherlands, Amersfoort, The Netherlands.ORCID 0000-0002-2962-2247
Ruth CroneyRoche Products Ltd, Welwyn Garden City, UK.ORCID 0009-0004-8176-3073
Lydia LanmanF. Hoffmann-La Roche Ltd, Basel, Switzerland.
Jerson LaksFederação Brasileira das Associações de Alzheimer, Rio de Janeiro, Brazil.ORCID 0000-0002-0022-3162
Marco LyonsRoche Products Ltd, Welwyn Garden City, UK.
Lea ProulxRoche Innovation Center, F. Hoffmann-La Roche Ltd, Basel, Switzerland.
Marianna TsataliAlzheimer Hellas, Thessaloniki, Greece.ORCID 0000-0002-5972-8616
Karin WesterlundStiftelsen Alois Alzheimer, Stockholm, Sweden.
Jean GeorgesAlzheimer Europe, Luxembourg, Luxembourg.ORCID 0000-0003-4862-3031

Funding

F. Hoffmann-La Roche Ltd
6 · The paper itself

Abstract

backgroundCollaborations between patient organisations (POs) and the pharmaceutical industry can help identify and address the unmet needs of people living with a disease. In Alzheimer's disease (AD), the scale and complexity of the current unmet needs call for a broad and cross-sectoral collaboration, including people living with Alzheimer's (PLWA), their care partners and the wider research community.

objectiveThis study aimed to describe learnings from the Finding Alzheimer's Solutions Together (F.A.S.T.) Council, a collaboration between POs and Roche, convened to better understand the unmet needs of PLWA and their care partners.

results1. Learnings from the collaboration, including clarifying objectives and members' expectations upfront, and establishing a set of guiding values and engagement principles. 2. Insights and recommendations for improving care in AD, including a wide range of unmet needs and potential solutions, systematically captured throughout the PLWA journey. These have resulted in several published reports and other outcomes, including (1) 'Portraits of care', highlighting the role of care partners, and the impact of coronavirus disease 2019 on care; (2) Clinical trial guidebook, recommending how PLWA and care partner experience can be incorporated into trial design; (3) 'Commitments Catalogue', highlighting progress by governmental organisations in achieving their commitments; and (4) a report to guide policy on improving diversity, equity and inclusion in clinical trials.

conclusionsClose collaboration between POs and the pharmaceutical industry in AD can enable effective research, in which PLWA and care partners are engaged as 'experts through experience' to help identify key unmet needs and co-create solutions with the wider AD research community. This paper and the work undertaken by the F.A.S.T. Council may act as a blueprint for meaningful collaboration between POs and the pharmaceutical industry. PATIENT OR PUBLIC CONTRIBUTION: The paper reports the collaboration between POs, the F.A.S.T. Council and Roche to progress towards a future in which PLWA can live fulfilling lives with their disease managed well. CLINICAL

trial registrationNot applicable.

Indexed as

Alzheimer DiseaseClinical Trials as TopicHumansLearningQuality ImprovementAlzheimer's diseasedementiaimproving dementia carepatient‐centred carepatient educationpatient engagement

Identifiers

PMID38629481
PMCPMC11022292

What OpenQuestion holds

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LicenceCC BY
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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.