PatientsLikeMe IOM Survey. Paul Wicks, PhD.

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Valentine Parker
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1 PatientsLikeMe IOM Survey Paul Wicks, PhD.

2 Outline Rationale Methods Results Participants Health Care Providers Data Sharing Beliefs Care Coordination Reasons for Joining PatientsLikeMe Sharing on PatientsLikeMe

3 Rationale In collaboration with Consumer Reports, a webbased survey ( CR poll ) was fielded by the IOM to 1,069 demographically representative US Adults who had seen at least one healthcare provider in previous 12 months. Only 38% of poll respondents reported having at least one chronic condition, but it was not possible to record what conditions were bothering patients in the poll. We sought to compare some key findings in the general population with members of PatientsLikeMe

4 Methods Registered members of PatientsLikeMe who had logged into the site at least once in the preceding 90 days were invited to take part in a modified version of the CR poll. We used iterative pilots to optimize messaging in order to maximize open rates. In total, 13,524 participants were invited to the survey between September and October 2012, with a single automated reminder message three days after initial invite.

5 Results Total invited population: 13,524 Complete 2,890 (21.3%) Incomplete 558 (4.1%) Opt-out 802 (5.9%) No response 9,274 (68.3%) 73.5% of sample from United States All further analyses in this presentation are US only for sake of comparability but other countries represented: Canada 8.4% UK 6.5% Australia 2.6% New Zealand 1.2%

6 Demographics (US Only) IOM PLM N 1,068 2,125 Sex (% Female) 52% 77% Chronic Condition 38% 91% Age Groups 18-34* 20% 11% % 50% % 39% SF1 State of Current Health Excellent / V Good 55% 17% Good 31% 29% F / Poor 13% 54%

7 Main HealthCare Provider IOM PLM Doctor 79% 72% None 11% N/A Nurse Practitioner 4% 6% Specialist 2% 17% Physician Assistant 2% 3% Nurse 1% 0.5% Other 1% 2% Confidence HCP stays informed of latest medical information IOM PLM 5 Very confident 42% 47% 4 37% 32% 3 17% 14% 2 2% 5% 1 Not at all confident 1% 3%

8 Overall HCP Satisfaction IOM PLM 10 (Very Satisfied) 29% 38% 68% 9 19% 19% 71% 8 20% 14% 7 12% 11% 6 7% 6% 5 7% 5% 4 3% 3% 3 2% 2% 2 1% 1% 1 (Not at all Satisfied) 1% 2%

9 Communicating w/ Provider IOM PLM In-Person Office Visits 94% 94% Phone Calls 31% 57% 5% 19% E-visit 3% 9% Fax 1% 4% Text 1% 2%

10 Patient Activation in HCP Consultation Visits How comfortable are you IOM PLM Asking questions 87% 92% Telling your HCP if you don t understand something they are saying 86% 91% Telling the truth about your health behaviors 85% 90% Explaining your personal ideas, preferences and goals for your tests and treatments 77% 85% Sharing new information you ve heard 75% 84% Bringing materials to discuss 65% 82% Asking for a second opinion 62% 70%

11 Data Sharing (Q17) Do you believe your XXX is currently used to help improve the care of future patients who might have the same or similar condition? XXX IOM Health Data Don t know 47% 48% 38% My XXX should be used to help improve the care of future patients who might have the same or similar condition XXX IOM Health Data Health Data outside of PLM Strongly Agree 40% 67% 74% Somewhat Agree 49% 27% 23% Somewhat Disagree Health Data outside of PLM Yes 32% 31% 57% No 19% 21% 6% 7% 5% 2% Strongly Disagree 3% 2% 0% Health Data within PLM Health Data within PLM

12 Who Most Believes PLM Is Using Their Health Data to Improve Care? Condition N Yes No Don t Know MS % 5% 38% Fibromyalgia % 5% 35% Parkinson s % 5% 28% ALS % 6% 26% Epilepsy % 5% 38% RA 86 47% 1% 53% Lupus / SLE 69 52% 6% 42% Major Depression 51 62% 2% 35% Diabetes Type II 22 45% 9% 46% Psoriasis 17 35% 18% 48% Bipolar I 27 63% 0% 37% Chronic Fatigue 24 54% 13% 33% Bipolar II 25 56% 16% 28% HIV 23 61% 0% 39% Psoriatic Arthritis 10 60% 0% 40% Kidney Transplant 11 73% 0% 27%

13 Who believes PLM Is Using Their Data vs. Wants Data to be Used to Improve Care? Condition N Believe PLM using data to improve care Want PLM data to be used to improve care MS % 98% 94% Fibromyalgia % 98% 94% Parkinson s % 98% 97% ALS % 98% 96% Epilepsy % 98% 95% RA 86 47% 97% 94% Lupus / SLE 69 52% 97% 93% Major Depression 51 62% 98% 90% Diabetes Type II 22 45% 96% 91% Psoriasis 17 35% 94% 77% Bipolar I 27 63% 100% 89% Chronic Fatigue 24 54% 92% 92% Bipolar II 25 56% 88% 80% HIV 23 61% 96% 91% Psoriatic Arthritis 10 60% 100% 100% Kidney Transplant 11 73% 100% 100% Want non-plm data used to improve care

14 Team Coordination (Q18) Do your health care providers work as a team to coordinate your health care and share information about your health, to be sure that you receive the right care to stay healthy? IOM IOM PLM Yes 44% 52% No 20% 31% Don t Know 34% 17% I would like my health care providers, including my primary care provider, specialists, mental health professional and others, to work as a team to coordinate my health care and share information about my health to be sure that I receive the right care to stay healthy PLM Strongly Agree 62% 85% Somewhat Agree 33% 13% Somewhat Disagree 3% 2% Strongly Disagree 2% 1%

15 How Important Were The Following in Helping You Decide to Join PLM? Track my health over time Compare my experience with others Receive community support from others Share my experience to benefit others Very important Somewhat important Only a little important 54% 28% 13% 5% 64% 29% 6% 2% 54% 30% 12% 5% 59% 33% 7% 2% Not at all important

16 How do Join Reasons Vary By Disease? % Very important N Track my health over time* Compare my experience with others* Receive community support from others (ns) Average % 64% 54% 59% MS % 62% 56% 58% Fibromyalgia % 65% 59% 56% Parkinson s % 76% 58% 63% ALS % 70% 57% 62% Epilepsy % 58% 56% 62% RA 86 55% 71% 59% 66% Lupus / SLE 69 68% 67% 55% 57% Major Depression 51 57% 43% 39% 45% Diabetes Type II 22 59% 55% 55% 50% Psoriasis 17 35% 53% 35% 47% Bipolar I 27 89% 63% 63% 52% Chronic Fatigue 24 63% 54% 46% 58% Bipolar II 25 84% 44% 56% 40% HIV 23 65% 74% 57% 65% Psoriatic Arthritis 10 60% 60% 80% 90% Kidney Transplant 11 55% 100% 100% 91% Share my experience to benefit others (ns)

17 With Which of the Following People have you Shared your PLM Profile? PLM Healthcare Provider 19% Spouse / Partner 29% Child 9% Friend 23% Other caregiver 5% Another patient I know from outside PLM 16% Other 7% I have not created a PLM profile 3% None of the above 48%

18 Please Indicate How Likely You Think it is that Data from your PHR Might Be. Used to deny me health care benefits Used to limit my job opportunities Used without my knowledge Stolen by unknown individuals or companies Very likely Somewhat likely Somewhat unlikely 38% 34% 15% 12% 35% 31% 15% 19% 34% 41% 16% 8% 22% 39% 26% 13% Very unlikely

19 How do Sharing Concerns Vary By Disease? % Very likely N Used to deny me health care benefits (ns) Used to limit my job opportunities* Used without my knowledge (ns) Average % 35% 32% 22% MS % 33% 36% 23% Fibromyalgia % 42% 34% 24% Parkinson s % 25% 29% 22% ALS % 30% 30% 17% Epilepsy % 44% 37% 26% RA 86 49% 43% 38% 22% Lupus / SLE 69 41% 36% 41% 23% Major Depression 51 45% 41% 33% 20% Diabetes Type II 22 50% 36% 32% 23% Psoriasis 17 35% 18% 41% 18% Bipolar I 27 26% 56% 33% 11% Chronic Fatigue 24 42% 17% 38% 21% Bipolar II 25 52% 56% 36% 16% HIV 23 44% 35% 44% 30% Psoriatic Arthritis 10 30% 50% 40% 20% Kidney Transplant 11 36% 18% 9% 0% Stolen by unknown individuals or companies (ns)

20 Assuming Anonymity, Would you be Willing to Share your Health Data So that Yes No Don t Know Doctors can improve care 94% 2% 4% Hospitals can improve services 88% 4% 8% Researchers can learn about quality of health care, disease and prevention Public health officials can improve the health of my community Public health officials can learn about and improve the health of the whole population 92% 2% 6% 77% 9% 14% 81% 7% 12% Other patients can benefit from my experience 94% 2% 5% Drug companies can make safer products 84% 6% 10% Drug companies can make more effective products 83% 7% 10% Drug companies can learn more about my condition 78% 10% 13% Drug companies can improve their services 79% 9% 13%

SAMPLE PATIENT SURVEY QUESTIONNAIRE

SAMPLE PATIENT SURVEY QUESTIONNAIRE This document includes questions you could use- either as a stand alone document or as part of a larger survey- to assess a patient s satisfaction with their contraceptive care experience. --- Patient