Video Q&A: Patients leading the direction of clinical research - an interview with Paul Wicks

BMC Medicine

Paul Wicks¹ 

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

关键词: Patient reported outcomes;    Personalized medicine;    Participant-led research;   

Others  :  854475
DOI  :  10.1186/s12916-014-0118-1

 received in 2014-06-12, accepted in 2014-06-19,  发布年份 2014

【 摘 要 】

In this video Q&A, we talk to Paul Wicks about the emergence of participant-led research, and discuss how this field may be expected to develop in the near future, particularly with regard to personalized medicine.

【 授权许可】

   
2014 Wicks; licensee BioMed Central Ltd.

【 图 表 】

【 参考文献 】

• [1][http://www.Patientslikeme.com] webcite PatiensLikeMe. In .
• [2][http://www.patientslikeme.com/research/publications] webcite Research publications and talks from PatientsLikeMe. In .
• [3][https://www.patientslikeme.com/patients/view/40] webcite Stephen Heywood profile. In .
• [4][http://www.patientslikeme.com/conditions/9-als-amyotrophic-lateral-sclerosis] webcite ALS on PatientsLikeMe. In .
• [5][http://www.openresearchexchange.com] webcite Open Research Exchange. In .
• [6]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.
• [7]Fornai F, Longone P, Cafaro L, Kastsiuchenka O, Ferrucci M, Manca ML, Lazzeri G, Spalloni A, Bellio N, Lenzi P, Modugno N, Siciliano G, Isidoro C, Murri L, Ruggieri S, Paparelli A: Lithium delays progression of amyotrophic lateral sclerosis. Proc Natl Acad Sci U S A 2008, 105:2052-2057.
• [8][http:/ / alsn.mda.org/ article/ scientists-you-using-social-media-a dvance-als-research] webcite Davidson M: Scientists Like You: Using Social Media to Advance ALS Research. In .
• [9][http://www.patientslikeme.com/patients/view/10776] webcite Humberto-from-brazil’s journal. In .
• [10]Maier A, Holm T, Wicks P, Steinfurth L, Linke P, Münch C, Meyer R, Meyer T: Online assessment of ALS functional rating scale compares well to in-clinic evaluation: a prospective trial. Amyotroph Lateral Scler 2012, 13:210-216.
• [11][http://alslithium.atspace.com/] webcite ALS MND Lithium Treatment. In .
• [12]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.
• [13]O’Connor D: The Apomediated world: regulating research when social media has changed research. The Journal of Law, Medicine & Ethics 2013, 41:470-483.
• [14]Vayena E, Tasioulas J: The ethics of participant-led biomedical research. Nature Biotechnology 2013, 31:786-787.
• [15]Vayena E, Tasioulas J: Adapting Standards: Ethical Oversight of Participant-Led Health Research. PLoS Med 2013, 10:e1001402. doi:10.1371/journal.pmed.1001402
• [16]Bove R, Secor E, Healy BC, Musallam A, Vaughan T, et al.: Evaluation of an online platform for multiple sclerosis research: patient description, validation of severity scale, and exploration of BMI effects on disease course. PLoS ONE 2013, 8:e59707.
• [17]Wicks P, Sulham KA, Gnanasakthy A: Quality of life in organ transplant recipients participating in an online transplant community. Patient 2014, 7:73-84.
• [18][http://www.akusociety.org] webcite Alkaptonuria Society (AKU). In .
• [19][https://www.indiegogo.com/projects/cure-black-bone-disease] webcite INDIEGOGO. In .
• [20][http://www.themmrf.org] webcite Multiple Myeloma Research Foundation. In .
• [21][http://www.fittle.in/] webcite Fittle. In .