PatientsLikeMe ™

Paul Wicks (BSc Dunelm, PhD London, CSci) is part of the research team at PatientsLikeMe. He was born in Reading, England and spent several years living in Switzerland and the United States during childhood. He developed an interest in human biology at A-Level and chose to read Psychology at Durham University. Following his undergraduate degree he was awarded a prize PhD studentship at the Institute of Psychiatry, King's College London. His supervisors were Dr. Laura Goldstein and Dr. Sharon Abrahams, both of whom have undergone clinical and academic training and are two of the leading authorities on the psychological consequences of ALS/MND. The PhD was under the overall supervision of Professor Nigel Leigh, an internationally renowned leader in the field of neurological conditions including rare disorders such as PLS, PMA, PSP and MSA.

For his PhD, Paul travelled the UK testing patients with rare forms of ALS/MND, specifically the genetically inherited familial form of the disease, and progressive muscular atrophy (PMA), which affects only the lower motor neurones. As an adjunct to his main project Paul also carried out the UK's largest survey of depression and anxiety in MND from a 12-month consecutive sample from King's College Hospital and collaborated with Dr Martin Turner on a neuroimaging project using PET. He completed his PhD thesis in three years and passed his viva with no corrections; a rare achievement.

During the three years of his PhD he became heavily involved in supporting the Motor Neurone Disease Association; helping to raise £30,000 of donations, writing information sheets, training healthcare professionals, and giving talks to local branches. He has spoken at a number of national and international conferences, and has twice won the British Neuropsychiatry Association prize for best speaker. More recently, Paul was employed by the Parkinson's Disease Society under Professor Richard Brown on a three year project to investigate depression in Parkinson's disease.

Paul joined the PatientsLikeMe team as a consultant in 2006 as a moderator in the forum, drawing on his experience at the BUILD forum. Working remotely from London the role quickly expanded to include curation of the treatment and symptom databases, carrying out scientific research, and designing new communities. As the company has grown, the R&D team has grown with it, to include 5 PhDs and 2 RNs working full-time on improving patient outcomes, the only team of its kind in the world.

The son of an IT marketing consultant, Paul has always been at one with technology and interested in communicating ideas. He was the webmaster at the BUILD (Building User Involvement in MND) project, the UK's largest forum for people with ALS/MND, for five years. He also created the research volunteer database "MindSearch" at the Institute of Psychiatry. Paul has consulted for UK GRAD, an organisation involved in teaching transferable skills to PhD students, and was founder and editor-in-chief of a web based magazine for PhD students in the UK.

Paul is happily married with two cats.

Publications

Brownstein CA, Brownstein JS, Williams DS III, Wicks P, Heywood JA (2009) The power of social networking in medicine 27(10):888-90

Wicks P, Abrahams S, Papps B, Al-Chalabi A, Shaw CE, Leigh PN, Goldstein LH (2009) SOD1 and cognitive dysfunction in familial amyotrophic lateral sclerosis, Journal of Neurology 256(2):234-241

Wicks P, MacPhee G (2009) Pathological Gambling amongst Parkinson's Disease and ALS patients in an online community (PatientsLikeMe.com), Movement Disorders 24(7): 1085-1088

Wicks P (2009) Sharing Information with PatientsLikeMe, British Journal of Neuroscience Nursing 5(3):132-133

Wicks P, Massagli M, Wolf C, Heywood J (2009) Measuring function in advanced ALS: Validation of the ALSFRS-R extension items, European Journal of Neurology 16(3):353-9

Smith CA, Wicks PJ (2008) PatientsLikeMe: Consumer Health Vocabulary as a Folksonomy, AMIA Annu Symp Proc 6:682-6

Frost JH, Massagli MP, Wicks P, Heywood J (2008) How the social web supports patient experimentation with a new therapy: The demand for patient-controlled and patient-centered informatics, AMIA Annu Symp Proc 6:217-21

Wicks P & Frost J (2008) ALS patients request more information about cognitive symptoms, European Journal of Neurology, 15 (5), 497-500

Wicks P, Turner MR, Abrahams S, Hammers A, Brooks DJ, Leigh PN, Goldstein LH (2007) Neuronal Loss Associated With Word Retrieval Deficits In Amyotrophic Lateral Sclerosis: An (11C)-Flumazenil PET Study, Amyotrophic Lateral Sclerosis, OnlineEarly doi: 10.1080/17482960701737716

Wicks P, Abrahams S, Masi D, Hejda-Forde S, Leigh PN, Goldstein LH (2007) Prevalence of depression in a 12-month consecutive sample of patients with ALS, European Journal of Neurology

Wicks P (2007) Excessive yawning is common in the bulbar-onset form of ALS, Acta Psychiatrica Scandinavica, (Correspondence) May 24th 2007

Wicks P, Abrahams S, Leigh PN, Goldstein LH (2007) re: A rapid screening battery to identify frontal dysfunction in patients with ALS, Neurology online (Correspondence) March 10th 2007

Wicks P, Ganesalingham J, Collin C, Prevett M, Leigh NP, Al-Chalabi A (2007) Three soccer playing friends with simultaneous amyotrophic lateral sclerosis, Amyotrophic Lateral Sclerosis; 8(3):177-179

Wicks P (2007) Recruiting your control group; lynchpin or afterthought?, The Psychologist, Volume 20, pt. 1

Wicks P, Abrahams S, Leigh PN, Williams T, Goldstein LH (2006) Absence of cognitive, behavioral, or emotional dysfunction in progressive muscular atrophy, Neurology, Volume 67, p. 1718-1719

Papps B, Abrahams S, Wicks P, Leigh, PN, & Goldstein, LH (2005) Changes in memory for emotional material in amyotrophic lateral sclerosis (ALS), Neuropsychologia, Volume 43, Issue 8 p. 1107-1114