EXECUTIVE SUMMARY CML Life Africa 4 th Annual Meeting November 15-17, 2015 Marrakech, Morocco Prepared by Danielle Matia, MPH and Catherina Scheepers, MS January 2016 200 NE Pacific St, Ste 103 Seattle, WA 98105 USA
EXECUTIVE SUMMARY On 15-17 November 2015, The Max Foundation hosted the fourth annual meeting of CML Life Africa, the Africa network of patient organizations dedicated to chronic myeloid leukemia (CML). This meeting was made possible thanks to Novartis Oncology with support from Ariad Pharmaceuticals. For the past decade, The Max Foundation has invested efforts to establish and support patient organizations in Africa and beyond. In 2012, in partnership with patient leaders from Africa, The Max Foundation established CML Life Africa, a network of CML patient organizations represented in Africa. For four consecutive years, with the support of industry and international organizations, The Max Foundation has hosted the annual meeting of CML Life Africa, a capacity building workshop for patient leaders. As a result, CML patient leaders in 16 countries continue to be mentored, supported, and guided in the growth of their own local patient support associations. CML Life Africa 2015 was a two and half day workshop. Patient leaders from fifteen countries were invited to participate. A total of 18 patient leaders represented their respective organizations, both Morocco and South Africa had two representatives attend. The goals of the workshop were as follows: 1. Get feedback reports from advocates on the goals each of them set for 2015 2. Identify challenges and find solutions to help participating organizations grow 3. Provide training on how to use the new CML patient booklet 4. Address some issues of corporate governance, as identified by participants 5. Agree on a project for the Africa region to be carried out by all the organizations during 2016 Building on the success of the 2014 meeting, which borrowed from the format of workshops carried out by Max in Latin America, the 2015 CML Life Africa workshop included a feedback report by each group leader on the status of their goals and recommendations from the past year. CML patient group leaders gathered for a 2 1/2 day meeting that included a workshop, as well as advocacy training on corporate governance and proposal writing. A focus of the workshop was to help patient leaders learn the benefits of individualized selfassessment of corporate governance issues within their respective organizations. To achieve that goal, Clive Meyer, an accountant from South Africa and trustee of CML South Africa (CML SA), offered one-on-one consultation to each leader. Capacity building training focused on effective issues management and community governance, training on use of educational materials, and proposal writing. Page 2
The workshop concluded with the identification of a social media campaign for World CML Day as the common project for 2016. A survey conducted of participating advocates was positive and reflected the engagement of the leaders and an interest in a continuation of the workshops. The Max Foundation wishes to thank all of the participating leaders for their investment and engagement throughout the workshop. We thank all of the expert speakers, as well as the corporate sponsors that made the workshop possible. Participants Country Organization 1 Cameroon AMACAS LMC 2 Ethiopia CML Patients' Foundation Ethiopia 3 Ghana Ghana Patient Support Group 4 Kenya HENZO Kenya 5 Morocco AMAL 6 Morocco AMAL 7 Nigeria MAXCARE Nigeria 8 South Africa CML SA 9 South Africa CML SA 10 Tanzania Tanzania Patient Support Group 11 Egypt CanSurvive 12 Uganda Leukemia & GIST Advocacy Fraternity 13 Niger Association de lutte contre les leucémies au Niger (ALL Niger) 14 Senegal Senegal CML group 15 Mali CML Espoire Mali 16 Cote d Ivoire Leucemie Espoire Cote d Ivoire 17 Togo APGSB 18 Tunisia CML Tunisia Of the 18 patient leaders present this year, 4 were participating in CML Life Africa Workshop for the first time. They represented patient associations from Cote d Ivoire, Togo, Ethiopia and Morocco s second advocate. In addition, the following team members from The Max Foundation were in attendance: Page 3
Country Name Position 1 South Africa Catherina Scheepers Program Officer Southern Africa 2 Senegal Mame T. Fall MaxStation Senegal 3 Argentina Ines Garcia-Gonzalez Latin America Region Head 4 USA Danielle M. Matia Africa and Middle East Region Head Meeting Platform The fourth CML Life Africa workshop was built as a follow-up on the work done during the 2014 meeting. Each patient leader was tasked to report back to the general assembly on progress and activities carried out by respective groups to achieve goals set for 2015. Each advocate was asked to make a 7-10 min presentation as follow-up to the 2014 meeting showing goals the group needed to work on and recommendations of methods to achieve these goals. This presentation was to include challenges faced and other activities and successes during the year. Groups that were participating for the first time were asked to prepare a 7-10 min presentation on their current group status; addressing whether the group is a registered entity, its size, how patients are reached, its main areas of practice, source of funding, activities/events/support done and current needs and challenges. Capacity building training focused on corporate governance issues and how to resolve them, training on use of the CML patient booklet, and hands on review of proposal writing using The Maximize Life Grant RFP as a basis for capacity building in 2016. The workshop concluded with the identification of a common project for 2016: A social media campaign for CML Day featuring various iterations of the letter X this letter shape often being used to represent the human DNA double helix. The project was dubbed Crazy X. Presentation were followed by discussion on the four phases of group development. This discussion engaged advocates into a different level of introspective review on the status of their organization as it relates to their 2015 goals. Advocates were also introduced to the concept of tools versus goals. A clarification of these two concepts helped advocates avoid losing sight of the principal goals that their advocacy work should accomplish. Details of Day 2 Corporate Governance Clive Meyer, one of the trustees of CML SA lead this discussion. He started out by working with individual patient leaders on governance issues that individual organizations face and made recommendations tailored to the issues. These individual meetings were followed by a plenary presentation focused on the major questions that arose Page 4
during these consults. This provided an opportunity for group leaders to be engaged and voice opinions on how some of the issues should be tackled based on regional norms. Some of the issues raised during the discussion were: 1) Hard choices made by advocates when their only source of financial support is not in line with their over-all message of health and behavior - for example, alcohol and tobacco companies. 2) Knowing when to slow the growth of the organization in order to have a better footing in the future. Proposal writing Using the Maximize Life Campaign RFP, Cathy guided the leader through the process of putting together a proposal. Discussions centered on data collection needed before the proposal is written, as well as how to report back to the funder. Feedback on the Maximize Life Campaign was given to the group and suggestions on ways to improve the process were explored. The day ended with a dinner organized by Novartis. This dinner offered advocates the opportunity to meet members of Novartis Oncology Africa team and learn about Novartis vision for access in Africa, their work with advocacy groups and goals for collaboration with governments. A supplemental dinner symposium hosted by Novartis Africa team was also highly valued by the advocates as a great networking opportunity. Through presentations, they were introduced to the company s vision of access to treatment in Africa and role that government might play. Discussion also centered on how advocacy groups can influence the decision making processes regarding access to quality healthcare. Conclusion The meetings concluded with an internal review of activities carried out with the support of The Max Foundation. New participants to the CML Life Africa workshop were introduced to various ways The Max Foundation can support their group s growth and opportunity for funding. Challenges and Recommendations The main challenge for this year s event was the language barrier experienced by some of the representatives. There are 5 groups whose main language is French, following the discussion without translation was not possible for some of these representatives. Moving forward, the presence of a French interpretation service should be part of any CML Life Africa workshop to maximize every participant s contribution. Following the workshop, The Max Foundation s team translated all presentation and sent soft copies to all the French speakers to ensure that they have the same resources as their English speaking counterpart. Page 5
The compact format of the program made processing all the information challenging. Attendees appreciated the knowledge imparted, but wished for more time to be spend on some topics. This is a challenge that will require a creative solution, as the length of the workshop is dependent on funding availability. A suggestion would be emailing out pre-workshop information prior to the event, thus ensuring not all information is new and people are better prepared to participate. This year was the fourth time that patient leaders from Africa have come together. Through the years, we have noted that the majority of the patient leaders come out of the workshop energized and ready to advance their advocacy agenda. However, we have also notice that this mood can easily devolve into little or no concrete follow-up work by the participants. To promote growth, this year leaders have agreed to be accountable for achieving the goals they set. Leaders have to guide their respective organizations and work with their members to accomplish short term goals and be accountable to the network. Follow-up The members worked on identifying a common project for 2016. This project will be a social media campaign in September to coincide with World CML day. A project proposal will be drawn up by Advocate from Egypt, as she specializes in social media campaigns. The campaign will require all member groups to take and share photo s containing the letter X (representing DNA) on Facebook and Twitter. In preparation for the campaign, online group training on the use of Facebook will be held in January. This training also adds value to the capacity building of the groups. Policies for posting in the WhatsApp group were established and clarified. Members of the group will only post topics that promote the network group, share local events and are supportive of members facing challenges. At the end of the workshop, The Max Foundation s team prepared a report that has been sent to each patient leader. This report contains notes from the workshop discussion, summaries of the presentations as well as goals that each leader committed to accomplish during 2016. The Max Foundation s team will be tracking the progress of these goals by reaching out to individual leaders through telephone assessments at mid-year. Meeting Evaluation During the last session of the meeting, each participant was provided a feedback form. The following is a summary of the completed forms. Page 6
1. Meeting and Presentation Content The participants were asked to rate meeting structure, content, presentation, understanding of communication and usefulness of topics, on a scale from 1 to 5 with 1 being very dissatisfied and 5 being very satisfied. 3.65 3.6 3.55 3.5 3.45 3.4 3.35 Average measurement of meeting logistical arrangements 3.3 Travel accomodations Facilities Catering The inference from the data is that the average measurement for the meeting structure is well above the mean of 2.5, and well received by most. 2. Travel and Venue The meeting (and accommodation) was held at the Atlas Asni Hotel in Marrakech. The venue was chosen as it was recommended by the local CML patient groups and it met all the preset criteria. Delegates where requested to provide feedback regarding travel, accommodation, and venue and catering by rating it as; poor, satisfactory, good and excellent. Each statement is assigned a value (poor = 1, satisfactory = 2, good = 3, excellent = 4.) The scale is therefore between 1 (poor) and 4 (excellent). Page 7
Average measurement of meeting logistical arrangements 3.65 3.6 3.55 3.5 3.45 3.4 3.35 3.3 Travel accomodations Facilities Catering The travel received mostly 3 s and 4 s with the exception of one member stating it as poor. As travel measurement is not subdivided into areas such as travel management, ground transport or transit experience it is difficult to measure the reason of dissatisfaction. Most delegates stated the accommodation as good or excellent with three delegates rating it as satisfactory and one delegate not responding. The facilities received only ratings of good and excellent with one delegate not responding. The catering also received ratings of good and excellent with one delegate stating it as satisfactory and one delegate not responding. The overall measured average is well beyond the measurement mean of 2.5. Page 8
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