Patient engagement practices in clinical research among patient groups, industry, and academia in the United States: A survey

PLoS ONE

Volumn 10, Issue 10, 2015, Pages

  Smith, Sophia K ^a   Selig, Wendy ^b   Harker, Matthew ^c   Roberts, Jamie N ^c   Hesterlee, Sharon ^d   Leventhal, David ^e   Klein, Richard ^f   Patrick Lake, Bray ^c   Abernethy, Amy P ^g  

^a DUKE UNIVERSITY   (United States)

^b WS Collaborative   (United States)

^c DUKE CLINICAL RESEARCH INSTITUTE   (United States)

^d Parent Project Muscular Dystrophy   (United States)

^e PFIZER INC   (United States)

^f CENTER FOR DRUG EVALUATION AND RESEARCH   (United States)

^g FLATIRON HEALTH   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ACADEMIA; ARTICLE; ATTITUDE TO HEALTH; CLINICAL PRACTICE; CLINICAL RESEARCH; CONTRACT; EXPECTATION; HUMAN; INDUSTRY; INTERPERSONAL COMMUNICATION; NAMED GROUPS BY OCCUPATION; PATIENT ATTITUDE; PROTOCOL COMPLIANCE; RESEARCH SUBJECT; UNITED STATES; CLINICAL TRIAL (TOPIC); COOPERATION; MEDICAL RESEARCH; PATIENT PARTICIPATION; QUESTIONNAIRE;

BIOMEDICAL RESEARCH; CLINICAL TRIALS AS TOPIC; COOPERATIVE BEHAVIOR; HUMANS; INDUSTRY; PATIENT PARTICIPATION; SURVEYS AND QUESTIONNAIRES; UNITED STATES;

EID: 84949008675     PISSN: None     EISSN: 19326203     Source Type: Journal    
DOI: 10.1371/journal.pone.0140232     Document Type: Article

References (22)

1. National Library of Medicine. Health Hotlines: Directory of Information Resources Online. Available: http://healthhotlines.nlm.nih.gov/. Accessed 27 April 2015.
2. Gallin EK, Bond E, Califf RM, Crowley WF Jr., Davis P, Galbraith R, et al. Forging stronger partnerships between academic health centers and patient-driven organizations. Acad Med. 2013; 88(9):1220-1224. PMID: 23887007. doi: 10.1097/ACM.0b013e31829ed2a7
3. Gallin E, Bond E, Califf R, CrowleyW, Davis P, Galbraith R, et al. Partnerships with patient advocacy groups/voluntary health organizations can bridge gaps in clinical research. White paper. 2011. Available: http://www.clinicalresearchforum.org/vertical/sites/%7B97FFC4B0-AA89-45B2-8F74- 9693F47D3CB0%7D/uploads/2011-CRF-Whitepaper-partnering-with-VHOs.pdf. Accessed 1 March 2015.
4. Frost JH, Massagli MP. Social uses of personal health information within PatientsLikeMe, an online patient community: what can happen when patients have access to one another's data. J Med Internet Res. 2008; 10(3):e15. PMID: 18504244. doi: 10.2196/jmir.1053
5. PCORnet. The National Patient-Centered Clinical Research Network. Patient-powered research networks (PPRNs). Available: http://www.pcornet.org/patient-powered-research-networks/. Accessed 1 March 2015.
6. Michael J. Fox Foundation. Trial finder. Available: https://foxtrialfinder.michaeljfox.org/. Accessed 11 March 2015.
7. Juvenile Diabetes Research Foundation. JDRF clinical trials connection. Available: https://trials.jdrf.org/patient/. Accessed 11 March 2015.
8. Crohnology. Available: https://crohnology.com/. Accessed 11 March 2015.
9. Peay HL, Hollin I, Fischer R, Bridges JF. A community-engaged approach to quantifying caregiver preferences for the benefits and risks of emerging therapies for Duchenne muscular dystrophy. Clin Ther. 2014; 36(5):624-637. PMID: 24852596. doi: 10.1016/j.clinthera.2014.04.011
10. Eberling J, Vincent L, Goldman JG, Weintraub D, Kulisevsky J, Marras C, et al. Therapeutic development paths for cognitive impairment in Parkinson's disease: report of a regulatory roundtable. J Parkinsons Dis. 2014; 4(4):585-589. PMID: 24989876. doi: 10.3233/jpd-140385
11. Institute of Medicine. Public Engagement and Clinical Trials: New Models and Disruptive Technologies: Workshop Summary. Washington, DC: The National Academies Press. 2012.
12. Clinical and Translational Science Awards Consortium. The principles of community engagement. Agency for Toxic Substances and Disease Registry; 2011. Available: http://www.atsdr.cdc.gov/communityengagement/pdf/PCE-Report-508-FINAL.pdf Accessed 28 February 2015.
13. Goss CH, Mayer-Hamblett N, Kronmal RA, Ramsey BW. The cystic fibrosis therapeutics development network (CF TDN): a paradigm of a clinical trials network for genetic and orphan diseases. Adv Drug Deliv Rev. 2002; 54(11):1505-1528. PMID: 12458158.
14. Hollin IL, Peay HL, Bridges JF. Caregiver preferences for emerging duchenne muscular dystrophy treatments: a comparison of best-worst scaling and conjoint analysis. Patient. 2015; 8(1):19-27. PMID: 25523316. doi: 10.1007/s40271-014-0104-x.
15. Bartek RJ. Foundation-industry relationships-a new business model joint-venture philanthropy in therapy development. Curr Top Med Chem. 2014; 14(3):313-318. PMID: 24283968.
16. Hamburg MA. Speeches by FDA Officials. Available: http://www.fda.gov/NewsEvents/Speeches/ucm419920.htm. Accessed 16 March 2015.
17. U.S. Food and Drug Administration. Patient-Focused Drug Development. Available: http://www.fda. gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm347317.htm. Accessed 17 June 2015.
18. U.S. House Committee on Energy and Commerce. Available: http://energycommerce.house.gov/press-release/21st-century-cures-act-unanimously-approved. Accessed 17 June 2015.
19. Clinical Trials Transformation Initiative. CTTI website. Available: http://www.ctti-clinicaltrials.org/. Accessed 13 March 2015.
20. Landy DC, Brinich MA, Colten ME, Horn EJ, Terry SF, Sharp RR. How disease advocacy organizations participate in clinical research: a survey of genetic organizations. Genet Med. 2012; 14(2):223-228. PMID: 22261756. doi: 10.1038/gim.0b013e3182310ba0
21. Zamosky L. Social media offers new recruitment strategy for clinical trials. iHealthBeat; 2012. Available: http://www.ihealthbeat.org/insight/2012/social-media-offers-new-recruitment-strategy-for-clinical-trials. Accessed 3 March 2015.
22. Merrill Corporation, BayBio. Successful public-private partnerships: a guide to effective patient foundation and life science industry collaborations. White paper. 2013. Available: http://bit.ly/1C5mqnH. Accessed 11 March 2015.