PMID- 29720875
OWN - NLM
STAT- PubMed-not-MEDLINE
LR  - 20220330
IS  - 1177-889X (Print)
IS  - 1177-889X (Electronic)
IS  - 1177-889X (Linking)
VI  - 12
DP  - 2018
TI  - Patient engagement in type 2 diabetes mellitus research: what patients want.
PG  - 595-606
LID - 10.2147/PPA.S159707 [doi]
AB  - BACKGROUND: As patients are the ultimate stakeholder in their health, their 
      perspectives should be included along with researchers, providers, and funders of 
      research design, execution, and interpretation. Despite the high prevalence of 
      type 2 diabetes mellitus (T2DM), patients are rarely directly included in these 
      decisions. PURPOSE: We sought to determine areas of research most important to 
      patients with T2DM, identify ways through which patients with T2DM want to engage 
      in research, and evaluate online patient research networks as a source for 
      obtaining patient perspectives on research engagement. PATIENTS AND METHODS: This 
      study used an online patient community forum (PatientsLikeMe) to host two 
      asynchronous moderated discussions, each with three to four prompted discussion 
      posts. A qualitative summary of themes was derived from the posts. RESULTS: 
      Eighty-eight participants with T2DM took part. Participants were mostly white 
      (86%), averaged 58.6 years of age, half were female (50%), and over half (62%) 
      resided in the US. Research priorities included managing T2DM with comorbidities, 
      controlling blood sugar levels, finding a cure, and understanding causes of T2DM. 
      Participants wanted to see direct applications of research to their lives. 
      Clinical research was perceived to have overly restrictive eligibility criteria 
      and to measure outcome sets that do not adequately address patient health 
      concerns. Participants indicated broad interest in partnering in research and a 
      willingness to apply their skills and educational background to specific stages 
      in the research process. CONCLUSION: Patients with T2DM would like researchers to 
      address outcomes that have meaning in patients' daily lives. Initiatives to 
      involve patients in research should leverage and enable patients to contribute as 
      participants, advisors, or co-investigators, going beyond research topic 
      prioritization to full participation throughout the research process based on 
      their abilities and interest. This study provides support for the use of online 
      patient research network discussions to generate rich qualitative data to engage 
      patients in research.
FAU - Simacek, Kristina F
AU  - Simacek KF
AD  - PatientsLikeMe, Cambridge, MA, USA.
FAU - Nelson, Tanya
AU  - Nelson T
AD  - Janssen Scientific Affairs, LLC, Raritan, NJ, USA.
FAU - Miller-Baldi, Mignon
AU  - Miller-Baldi M
AD  - Janssen Medical Information Center, Titusville, NJ, USA.
FAU - Bolge, Susan C
AU  - Bolge SC
AD  - Janssen Scientific Affairs, LLC, Raritan, NJ, USA.
LA  - eng
PT  - Journal Article
DEP - 20180420
PL  - New Zealand
TA  - Patient Prefer Adherence
JT  - Patient preference and adherence
JID - 101475748
PMC - PMC5918623
OTO - NOTNLM
OT  - diabetes mellitus
OT  - patient engagement
OT  - patient involvement
OT  - qualitative research
OT  - research priorities
OT  - social media
OT  - social networking
COIS- Disclosure KFS is an employee of PLM and holds stock options in the company. SCB, 
      MBB, and TN are employees of the Janssen Pharmaceutical Companies of Johnson & 
      Johnson and stockholders in parent company Johnson & Johnson. The authors report 
      no other conflicts of interest in this work.
EDAT- 2018/05/04 06:00
MHDA- 2018/05/04 06:01
PMCR- 2018/04/20
CRDT- 2018/05/04 06:00
PHST- 2018/05/04 06:00 [entrez]
PHST- 2018/05/04 06:00 [pubmed]
PHST- 2018/05/04 06:01 [medline]
PHST- 2018/04/20 00:00 [pmc-release]
AID - ppa-12-595 [pii]
AID - 10.2147/PPA.S159707 [doi]
PST - epublish
SO  - Patient Prefer Adherence. 2018 Apr 20;12:595-606. doi: 10.2147/PPA.S159707. 
      eCollection 2018.