MoodNetwork: An Innovative Approach to Patient-centered Research.
Med Care
; 56 Suppl 10 Suppl 1: S48-S52, 2018 10.
Article
em En
| MEDLINE
| ID: mdl-30074951
ABSTRACT
INTRODUCTION:
Research has often been viewed as a passive process by which participants enroll in studies developed by researchers. It is becoming clearer that to understand the nuances of mood episodes and how to prevent them, we need to conduct large clinical trials that have the power to investigate moderators and mediators, or catalysts and mechanisms of change. MoodNetwork, the first online, patient-centered research community for individuals with mood disorders, aims to change the way that traditional research has been conducted by involving patients, their caregivers, and advocates in the process of research. The aim of this report is to share lessons learned from developing MoodNetwork.METHODS:
Participants enroll by completing a demographic survey and consent form. Once enrolled, participants are encouraged to complete optional surveys about their mood disorders and areas of research priority. Stakeholder and advocacy partners developed the website, web-based surveys, and recruitment materials.RESULTS:
MoodNetwork has enrolled 4103 participants to date. Of this sample, 96.9% report experiencing depression and 79.7% endorse symptoms of mania or hypomania. Participants rated reducing stigma and alleviating symptoms as their 2 largest research priorities. Recruitment has been slower than expected. Recruiting a diverse sample has been challenging, and this impacts the Network's ability to conduct comparative effectiveness research studies.DISCUSSION:
We discuss lessons learned from recruiting individuals with mood disorders to MoodNetwork, an innovative approach to conducting clinical trials. We identify and review 5 strategies for increasing enrollment as well as future directions.
Texto completo:
1
Base de dados:
MEDLINE
Assunto principal:
Participação do Paciente
/
Assistência Centrada no Paciente
/
Transtornos do Humor
/
Pesquisa Comparativa da Efetividade
/
Rede Social
/
Avaliação de Resultados da Assistência ao Paciente
Tipo de estudo:
Prognostic_studies
Limite:
Humans
País/Região como assunto:
America do norte
Idioma:
En
Revista:
Med Care
Ano de publicação:
2018
Tipo de documento:
Article