Could digital patient communities be the launch pad for patient-centric trial design?

Trials

Paul Wicks¹ 

[1] PatientsLikeMe, 155 2nd Street, Cambridge, MA 02141, USA

关键词: Clinical trials;    Protocol design;    Patient powered research networks;    Patient centered trial design;   

Others  :  806163
DOI  :  10.1186/1745-6215-15-172

 received in 2014-03-27, accepted in 2014-04-30,  发布年份 2014

【 摘 要 】

The system of medical discovery does not revolve around patients as unique individuals with preferences, needs, and desires. Rather it revolves around scientific scrutiny, the needs of the sponsor, and the desires for regulatory approval. The patient is only a subject. Is it any wonder, then, that some patients have rejected the current medical paradigm and sought to find their own path?

【 授权许可】

   
2014 Wicks; licensee BioMed Central Ltd.

【 参考文献 】

• [1]Shefner JM, Cudkowicz ME, Schoenfeld D, Conrad T, Taft J, Chilton M, Urbinelli L, Qureshi M, Zhang H, Pestronk A, Caress J, Donofrio P, Sorenson E, Bradley W, Lomen-Hoerth C, Pioro E, Rezania K, Ross M, Pascuzzi R, Heiman-Patterson T, Tandan R, Mitsumoto H, Rothstein J, Smith-Palmer T, MacDonald D, Burke D: NEALS Consortium: a clinical trial of creatine in ALS. Neurology 2004, 63:1656-1661.
• [2]Frost JH, Massagli MP, Wicks P, Heywood J: How the social web supports patient experimentation with a new therapy: The demand for patient-controlled and patient-centered informatics. AMIA Annu Symp Proc 2008, 217-221. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2656086/ webcite
• [3]Wicks P, Vaughan TE, Massagli MP, Heywood J: Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm. Nat Biotechnol 2011, 29:411-414.
• [4]Armon C: Is the lithium-for-ALS genie back in the bottle? Not quite. Neurology 2010, 75:586-587.
• [5]Wicks P, Vaughan T, Heywood J: Subjects no more: what happens when trial participants realize they hold the power? BMJ: Br Med J 2014, 348:g368.
• [6]Perlmutter J: Advocate involvement in I-SPY 2. Breast Dis Year Bk Q 2011, 22:21-24.
• [7]de Wit M, Abma T, Loon MK-V, Collins S, Kirwan J: Involving patient research partners has a significant impact on outcomes research: a responsive evaluation of the international OMERACT conferences. BMJ Open 2013, 3:e002241-e002241.
• [8]de Wit MPT, Koelewijn-van Loon MS, Collins S, Abma TA, Kirwan J: “If i wasn’t this robust”: patients’ expectations and experiences at the Outcome Measures in Rheumatology Conference 2010. Patient 2013, 6:179-187.
• [9]Wicks P, Heywood B, Heywood J: Online platform to accelerate patient involvement in open instrument development. Quality Life Res, 1 2013, 22(S1):55. doi:10.1007/s11136-013-0543-1
• [10]Bove R, Secor E, Vaughan T, Wicks P, Glanz B, Weiner H, Chitnis T, De Jager P: Comparison of demographic and disease characteristics in patients with multiple sclerosis at an MS clinic and on an online research forum. Neurology 2012, 78:P01.145.