June 2, 2011

X. Methodology

This report presents information on barriers to accessing pain treatment in 40 countries.

Countries were selected in two steps to ensure a broad and diverse sample. First, the five most populous countries in each of the sixWHO regions were chosen. Second, specific countries were selected where additional diversity of experience or in-depth understanding of experience was desired.

In Europe, 10 countries were selected in order to include a range of countries from both Western Europe and formerly Communist countries of Eastern and Central Europe. Countries in different regions (including Cameroon, Uganda, El Salvador, Ecuador, Guatemala, Jordan, Georgia, and Cambodia) where Human Rights Watch had on-going work were also included.

From this overall list of countries, four countries were excluded because collecting information was impractical or constituted an unacceptable level of risk for the healthcare workers (the Democratic Republic of Congo, Uzbekistan, Burma, and Sudan). In their place, the next-most-populous country in the relevant WHO region was chosen. Among selected countries, one (Italy), was excluded after repeated efforts to contact appropriate survey respondents yielded no responses.

The primary means of collecting this data was surveying healthcare workers by telephone interview. The survey questions (see Annex 2) ask about common barriers to access to pain treatment identified in Human Rights Watch’s March 2009 report: “Please, do not make us suffer any more…”: Access to Pain Treatment as a Human Right. The telephone interviews took place between July 2009 and October 2010.

The healthcare workers interviewed for this research were identified through professional associations and nongovernmental organizations that work on access to pain treatment and palliative care. Two survey respondents were interviewed in each country except Guatemala, China, and Cambodia, where there were three survey respondents. Most survey respondents (77 of 82) were medical doctors, many of whom also held academic appointments. Three survey respondents were nurses, one was the head of a national hospice and palliative care association with experience as a hospice administrator, and one was a technical advisor for a nongovernmental organization working to integrate palliative care into the country’s health system. Many of the healthcare workers were palliative care specialists; others were specialists in pain management, anesthesiology, or oncology.

Healthcare workers were initially contacted by email, with a description of the project and the survey questions. Healthcare workers who agreed to participate were then interviewed by telephone to collect their survey responses. At the preference of the respondent, interviews were conducted in English, Spanish, French, Russian, or Mandarin. In addition, internet research was used to gather secondary materials relevant to the survey questions, such as national palliative care policies, cancer and HIV/AIDS control policies, essential medicines lists, and drug control laws and regulations.

The healthcare workers’ survey responses and the results of the secondary research were compared and the healthcare workers were then contacted by email seeking clarification of discrepancies between the survey answers they each provided or between their answers and any relevant documents collected. Survey respondents from 35 countries responded with clarifying information.

Once clarifying information was received, letters presenting the survey results were sent to the Ministry of Health and the Competent National Authority—the body responsible for implementing the 1961 Single Convention on Narcotic Drugsin each country. The letters explained the research and invited clarification of the initial research findings or additional relevant information. The letters were sent by post and, where possible, fax or email. Replies were received from Poland, Jordan, Georgia, Uganda, and El Salvador.

The initial survey results were also published on a password protected website. Through the email newsletters of the Worldwide Palliative Care Alliance and the International Association for Hospice and Palliative Care, members of these organizations were invited to comment on the initial findings with clarifications or additional relevant information.

The maps and tables of opioid consumption in this report were prepared using publically available data to compare the availability of medicines to treat moderate to severe pain in countries around the globe.[141] Data on each country’s consumption of the principal medicines used to treat moderate to severe pain is published each year by the International Narcotics Control Board.[142] Using expert estimates of the prevalence and severity of pain in terminal cancer and HIV/AIDS patients,[143] and WHO data on cancer and HIV/AIDS mortality,[144] a calculation of each country’s ability to provide pain treatment for its terminal cancer and HIV/ AIDS patients was made, as an indicator of the availability of treatment for all patients with moderate to severe pain in the country. A table of relevant data and calculations can be found in appendix 3.

Survey responses are presented in five regional chapters: Africa, Americas, Europe, the Middle East, and North Africa (corresponding to WHO’s Eastern Mediterranean Region) and Asia (corresponding to WHO’s South East Asia and Western Pacific Regions).

[141]This method was adapted from the methodology presented in Seya et al., “A First Comparison Between the Consumption of and the Need for Opioid Analgesics at Country, Regional, and Global Levels,” Journal of Pain & Palliative Care Pharmacotherapy, vol. 25, (2001), p. 6.

[142]International Narcotics Control Board, “Narcotic Drugs: Estimated World Requirements for

2010: Statistics for 2008,” 2010, http://www.incb.org/incb/en/narcotic_drugs_reports.html (accessed 27 October 2010) pp. 208 – 258.

[143] Kathleen M. Foley et al., “Pain Control for People with Cancer and AIDS,” in Dean T. Jamison et al., eds., Disease Control Priorities in Developing Countries, 2nd ed. (New York: Oxford University Press, 2006), p. 982.

[144] World Health Organisation, “Global Health Observatory,” 2009, http://apps.who.int/ghodata/ (accessed 28 October 2010).