PatientsLikeMe ™

PatientsLikeMe users sometimes have the impression that I am a patient in their community.  I am not.  So far as I know, I do not have any of the conditions for which we currently have communities.  But I have spent more than the past 10 years working with organizations that have focused on improving the patient-centeredness of health care.  These include The Picker Institute, Harvard Program in Refugee Trauma, Dana-Farber Cancer Institute, and now, PatientsLikeMe.

Selected publications:

(1)    Hornung CA, Massagli MP. Primary‑Care Physicians' Affective Orientation Toward Their Patients.  Journal of Health and Social Behavior 1979;20(1):61‑76.

(3)        Hornung CA, Massagli MP.  A Hospital's Outputs as a Function of Supply and Demand Characteristics.  Journal of Health and Social Behavior 1980;21(4):302‑14.

(9)    Clarridge BR, Massagli MP.  On the Use of Female Spouse Proxies in Common Symptom Reporting.  Medical Care 1989;27:352‑366.

(10)  Fowler Jr FJ, Massagli MP,  Weissman J, Seage III GR, Cleary PD, Epstein AM. Some Methodological Lessons for Surveys of Persons with AIDS.  Medical Care 1992;30:1059-1066.

(11)  Haas JS,  Weissman JS, Cleary PD, Goldberg J, Gatsonis C, Seage III GR, Fowler Jr FJ, Massagli MP, Makadon H, Epstein AM. 1993. Discussion of Preferences for Life-sustaining Care by Persons with AIDS:  Predictors of Failure in Patient-Doctor Communication. Archives of Internal Medicine 1993;153:1241-1248.

(12)  Cleary PD, Fowler Jr FJ, Weissman J, Massagli MP, Wilson I, Seage III GR, Gatsonis C,  Epstein AM.  Health-Related Quality of Life in Persons with AIDS.  Medical Care 1993;31:569-580.

(14)  Weissman JS, Makadon HJ, Seage III GR, Massagli MP, Gatsonis CA, Craven DE, Stone VE, Bennett IA, Epstein AM. 1994. Changes in Insurance Status and Access to Care by Persons with AIDS in the Boston Health Study.  American Journal of Public Health 1994;84:1997-2000.

(15)  Massagli MP, Weissman JS, Seage III GR, Epstein AM. Correlates of Employment after AIDS Diagnosis in the Boston Health Study.  American Journal of Public Health 1994;84:1976-1981.

(16)  Fowler Jr FJ, Cleary PD, Massagli MP, Weissman JS, Epstein AM. The Role of Reluctance to Give-up Life in the Measurement of the Value of Health States.  Medical Decision Making 1995;15:195-200.

(17)  Epstein AM, Seage III GR, Weissman JS, Cleary PD, Fowler Jr FJ, Gatsonis CA, Massagli MP, Stone VE, Coltin K, Craven DE, Goldberg J, Makadon H.  1995.  Costs of Medical Care and Out of Pocket Expenditures for Persons with AIDS in the Boston Health Study." Inquiry - The Journal of Health Care Organization Provision and Financing 1995;32:211-221.

(19)  Weissman JS, Levin K, Chasan-Taber S, Massagli MP, Seage III GR, Epstein AM.  The Validity of Self-reported Health Care Utilization by AIDS Patients.  AIDS 1996;10:775-783.       

(21)    Seage III GR, Gatsonis CA, Weissman JS, Haas J, Cleary PD, Fowler Jr. FJ, Massagli MP, Stone VE, Craven DE, Makadon H, Goldberg J, Coltin K, Levin KS, Epstein AM.  The Boston AIDS Survival Score (BASS):  A Multidimensional AIDS Severity Adjustment.  American Journal of Public Health 1997;87:567-573.

(22)    Weissman JS, Haas JS, Fowler Jr FJ, Gatsonis CA, Massagli MP, Seage III GR, Cleary PD.  The Stability of Preferences for Life Sustaining Care Among Persons with AIDS.  Medical Decision Making 1999;19(1):16-26.

(24)    Mollica RF, McInnes K, Sarajlic N, Lavelle J, Sarajlic I, Massagli MP.  Disability Associated With Psychiatric Comorbidity and Health Status in Bosnian Refugees Living in Croatia. Journal of the American Medical Association 1999;282,5:433-39.

(25)    Ngo-Metzger Q,  Massagli MP, Clarridge BR, Manocchia M, Davis RB, Iezzoni LI, Phillips RS.  Patient-Centered Quality Measures for Asian Americans:  Research in Progress.  American Journal of Medical Quality. 2000;15(4):167-73.

(26)    Mollica, RF, Sarajlic N, Chernoff, M, Lavelle J, Sarajlic I, Massagli MP.  Longitudinal Study of Psychiatric Symptoms, Disability, Emigration, and Mortality Among Bosnian Refugees. Journal of the American Medical Association   2001;286,5:546-554.

(29)    Ngo-Metzger Q, Massagil MP, Clarridge BR, Manocchia M, Davis RB, Iezzoni LI, Phillips RS.  Linguistic and Cultural Barriers to Care: Perspectives of Chinese and Vietnamese Immigrants. J Gen Intern Med 2003;18:44-52.

(30)    Green AR, Ngo-Metzger Q, Legedza ATR, Massagli MP, Phillips RS, Iezzoni LI. Interpreter Services, Language Concordance, and Healthcare Quality:  Experiences of Asian Americans with Limited English Proficiency. J Gen Intern Med 2005; 20:1050-1056.

(31)    Ahn AC, Ngo-Metzger Q, Legedza ATR, Massagli MP, Clarridge BR, Phillips RS.  Complementary and Alternative Medical Therapy Use Among Chinese and Vietnamese Americans:  Prevalence, Associated Factors, and the Effects of Patient-Clinician Communication.  AJPH  2006: 96:647-653.

(32)    Mollica RF, Caridad KR, Massagli MP.  Longitudinal Study of Posttraumatic Stress Disorder, Depression, and Changes in Traumatic Memories Over Time in Bosnian Refugees.  The Journal of Nervous and Mental Disease 2007:195:527-579.

(33)    Ngo-Metzger Q, Sorkin DH, Phillips RS, Greenfield S, Massagli MP, Clarridge B, Kaplan SH.  Providing High-Quality Care for Limited English Proficient Patients:  The Importance of Language Concordance and Interpreter Use. J Gen Intern Med 2007; 22(Suppl 2):324-330.

(34)    Shah AD, Massagli MP, Kohli N, Rajan SS, Braaten KP, Hoyte L.  A reliable, valid instrument to assess patient knowledge about urinary incontinence and pelvic organ prolapse. Int Urogynecol J Pelvic Floor Dysfunct. 2008 May 15. [Epub ahead of print]

(35)    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 May 27;10(3):e15.<URL: http://www.jmir.org/2008/3/e15/>

(36)  Wicks P, Massagli MP, Wolf C, Heywood J.  Measuring function in advanced ALS: validation of ALSFRS-EX extension items.  European Journal of Neurology 2009, 16: 353–359.

(37)  Isaac T, Weissman JS, Davis RB, Massagli M, Cyrulik A, Sands DZ, Weingart SN.  Overrides of Medication Alerts in Ambulatory Care.  Arch Intern Med. 2009;169(3):305-311.

(38)  Weingart SN, Massagli M, Cyrulik A, Isaac T, Morway L, Sands DZ, Weissman JS.
Assessing the Value of Electronic Prescribing in Ambulatory Care: A Focus Group
Study. Int J Med Inform 2009, 78:571-578.

(39) Weingart SN, Simchowitz B, Shiman L, Brouillard D, Cyrulik A, Davis RB, Isaac T, Massagli M, Morway L, Sands DZ, Spencer J, Weissman JS. Clinicians’ Assessments of Electronic Medication Safety Alerts in Ambulatory Care. Arch Intern Med. 2009;169(17):1627-1632.

(40)  Weingart SN, Simchowitz B, Padolsky H, Isaac T, Seger AC, Massagli M, Davis RB, Weissman JS.  An Empirical Model to Estimate the Potential Impact of Medication Safety Alerts on Patient Safety, Health Care Utilization, and Cost in Ambulatory Care.  Arch Intern Med. 2009; 169:1465-1473.

(41)  Frost J and Massagli M.  PatientsLikeMe the case for a data-centered patient community and how ALS patients use the community to inform treatment decisions and manage pulmonary health.  Chronic Respiratory Disease 2009; 6(4) 225–229.

(42)  Wicks P, Massagli M, Frost J, Brownstein C, Okun S, Vaughan T, Bradley R, Heywood J. Sharing Health Data for Better Outcomes on PatientsLikeMe.  J Med Internet Res 2010;12(2):e19

(43)  Turner MR, Wicks P, Brownstein CA, Massagli MP, Toronjo M, Talbot K, Al-Chalabi A  Concordance between site of onset and limb dominance in amyotrophic lateral sclerosis.  J Neurol Neurosurg Psychiatry. 2010 Jun 18;