The Hep-CORE policy score: A European hepatitis C national policy implementation ranking based on patient organization data

Background New hepatitis C virus (HCV) treatments spurred the World Health Organization (WHO) in 2016 to adopt a strategy to eliminate HCV as a public health threat by 2030. To achieve this, key policies must be implemented. In the absence of monitoring mechanisms, this study aims to assess the extent of policy implementation from the perspective of liver patient groups. Methods Thirty liver patient organisations, each representing a country, were surveyed in October 2018 to assess implementation of HCV policies in practice. Respondents received two sets of questions based on: 1) WHO recommendations; and 2) validated data sources verifying an existing policy in their country. Academic experts selected key variables from each set for inclusion into policy scores. The similarity scores were calculated for each set with a multiple joint correspondence analysis. Proxy reference countries were included as the baseline to contextualize results. We extracted scores for each country and standardized them from 0 to 10 (best). Results Twenty-five countries responded. For the score based on WHO recommendations, Bulgaria had the lowest score whereas five countries (Cyprus, Netherlands, Portugal, Slovenia, and Sweden) had the highest scores. For the verified policy score, a two-dimensional solution was identified; first dimension scores pertained to whether verified policies were in place and second dimension scores pertained to the proportion of verified policies in-place that were implemented. Spain, UK, and Sweden had high scores for both dimensions. Conclusions Patient groups reported that the European region is not on track to meet WHO 2030 HCV goals. More action should be taken to implement and monitor HCV policies.


Data Dictionary Codebook
All personal and patient group contact information will remain private. Responses to the survey will be reported according to country and respective patient group.
Please provide the following information for the individual who will be most responsible for completing this survey. The WHO Global Health Sector Strategy on Viral Hepatitis, 2016-20211 recommends removing "legal, regulatory, and policy barriers that hinder equitable access to hepatitis services" such as high-threshold harm reduction services, brosis level restrictions and drug abstinence policies for hepatitis C treatment.
descriptive 20 policy_barriers_equity_mx_q On a scale of 1-5 please indicate how well you think this recommendation is being implemented today in your country.
radio (Matrix), Required 0 Not implemented at all (1) 1 Somewhat implemented (2) 2 Moderately implemented (3) 3 Mostly implemented (4) 4 Fully implemented (5 The WHO Global Health Sector Strategy, 2016-20211 recommends to, "end policies and practices that condone or encourage stigma and discrimination against people at risk for hepatitis or living with hepatitis" such as employment discrimination based on disease status.
descriptive 24 policy_stigma_discrim_mx_q On a scale of 1-5, please indicate how well you think this recommendation is being implemented today in your country.
radio (Matrix) 0 Not functioning at all in practice (1) 1 Slightly functioning in practice (2) 2 Moderately functioning in practice (3) 3 Mostly functioning in practice (4) 4 Fully functioning (5 On a scale of 1-5 please indicate how well you believe this is functioning in practice. radio (Matrix), Required 0 Not functioning at all in practice (1) 1 Slightly functioning in practice (2) 2 Moderately functioning in practice (3) 3 Mostly functioning in practice (4) 4 Fully functioning (5 On a scale of 1-5, please indicate how well you believe this is functioning in practice. radio (Matrix), Required 0 Not functioning at all in practice (1) 1 Slightly functioning in practice (2) 2 Moderately functioning in practice (3) 3 Mostly functioning in practice (4) 4 Fully functioning (5) 129 nsp_prison_2 Show the eld ONLY if: [contact_info_country] = '21' According to a recent review8 of the state of viral hepatitis care in European prisons, your country provides needle and syringe programmes (NSPs) in prisons and needle exchange is technically available but is limited due to extra requirements.
descriptive 130 nsp_prison_2_mx_q Show the eld ONLY if: [contact_info_country] = '21' On a scale of 1-5, please indicate how well you believe this is functioning in practice.

radio (Matrix), Required
0 Not functioning at all in practice (1) 1 Slightly functioning in practice (2) 2 Moderately functioning in practice (3) 3 Mostly functioning in practice (4) 4 Fully functioning ( On a scale of 1-5, please indicate how well you believe this is functioning in practice.

radio (Matrix), Required
0 Not functioning at all in practice (1) 1 Slightly functioning in practice (2) 2 Moderately functioning in practice (3) 3 Mostly functioning in practice (4) 4 Fully functioning (5 (1) 1 Slightly functioning in practice (2) 2 Moderately functioning in practice (3) 3 Mostly functioning in practice (4) 4 Fully functioning (5 On a scale of 1-5 please indicate how well you believe this is functioning in practice in your country. radio (Matrix), Required 0 Not functioning at all in practice (1) 1 Slightly functioning in practice (2) 2 Moderately functioning in practice (3) 3 Mostly functioning in practice (4) 4 Fully functioning (5 (1) 1 Slightly functioning in practice (2) 2 Moderately functioning in practice (3) 3 Mostly functioning in practice (4) 4 Fully functioning (5 On a scale of 1-5 please indicate how well you believe this is functioning in practice in your country. radio (Matrix), Required 0 Not functioning at all in practice (1) 1 Slightly functioning in practice (2) 2 Moderately functioning in practice (3) 3 Mostly functioning in practice (4) 4 Fully functioning (5 (1) 1 Slightly functioning in practice (2) 2 Moderately functioning in practice (3) 3 Mostly functioning in practice (4) 4 Fully functioning ( (1) 1 Slightly functioning in practice (2) 2 Moderately functioning in practice (3) 3 Mostly functioning in practice (4) 4 Fully functioning (5 On a scale of 1-5, please indicate how well you believe this is functioning in practice in prisons in your country. radio (Matrix), Required 0 Not functioning at all in practice (1) 1 Slightly functioning in practice (2) 2 Moderately functioning in practice (3) 3 Mostly functioning in practice (4) 4 Fully functioning (5 On a scale of 1-5, please indicate how well you believe this treatment provision is functioning in practice in prisons in your country. radio (Matrix), Required 0 Not functioning at all in practice (1) 1 Slightly functioning in practice (2) 2 Moderately functioning in practice (3) 3 Mostly functioning in practice (4) 4 Fully functioning (5)