{"id":2724,"date":"2024-11-14T22:47:25","date_gmt":"2024-11-14T22:47:25","guid":{"rendered":"https:\/\/www.coaliciondelasamericas.org\/eng\/?page_id=2724"},"modified":"2024-11-18T21:48:51","modified_gmt":"2024-11-18T21:48:51","slug":"program-report","status":"publish","type":"page","link":"https:\/\/www.coaliciondelasamericas.org\/eng\/program-report\/","title":{"rendered":"Program Report"},"content":{"rendered":"\n

Knowledge Management and Transfer 2024<\/h4>\n\n\n\n
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OVERVIEW<\/strong><\/p>\n\n\n\n

A LIFE-LONG LOCAL COMMITMENT<\/strong><\/p>\n\n\n\n

NMOs are founded by interested local parties committed, and frequently dedicated for life, to improving the attention  people with clotting disorders in their countries.<\/p>\n\n\n\n

<\/p>\n<\/div>\n\n\n\n

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\"Knowledge<\/figure>\n<\/div>\n<\/div>\n\n\n\n

These local leaders are well aware of the present situation, the challenges to be met, and how to accompany each one of their members.<\/p>\n\n\n\n

Likewise, NMOs have the support of COA and the World Federation of Hemophilia, which accompany their local consolidation, understand specific situations, and are aware of their commitment to the community.<\/p>\n\n\n\n

COA has aimed to undertake a long-term project for the American communities with clotting disorders on the principle of treatment sustainability for all, depending on the level of development of each NMO.<\/p>\n\n\n\n

Therefore, the \u00abKnowledge Transfer\u00bb course as an accompaniment of the selected NMOs will be the first step towards empowering each cornerstone in America. Throughout the last decades, every person involved has been relevant to achieving the objectives both specific and general in each organization.<\/p>\n\n\n\n

In this context we ask ourselves, Are the young and the elderly two kinds looking at different places within an NMO? <\/strong>In recent years COA has acknowledged the need for starting a transfer process of knowledge and values between pioneers\/founders and new members. There is no abyss between them nor are they two \u201ccivilizations\u201d incapable of communicating. We only need to facilitate mutual understanding and intergenerational dialogue based on non- hierarchical conversation as a human connection that builds trust.<\/p>\n\n\n\n

METHODOLOGICAL APPROACH AND POPULATION SURVEYED<\/strong><\/p>\n\n\n\n

Two data collection tools have been used:<\/p>\n\n\n\n

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  • A semi-structured Survey Form (with open and closed questions) sent to the 26 NMOs that are part of the COA.<\/li>\n\n\n\n
  • A course on Knowledge Management, Transfer and Administration addressed to the NMOs, which allowed for the exchange among the different tiers in each organization (leader, members, and volunteers- youngsters).<\/li>\n<\/ul>\n\n\n\n

    This information enabled a qualitative study based on said diagnostic tools, with the following characteristics:<\/p>\n\n\n\n

      \n
    • Target Population<\/u><\/strong>: NMO members (leaders, volunteers) and people selected to take the course on Knowledge Management, Transfer and Administration.<\/li>\n\n\n\n
    • Geographic area<\/u><\/strong>: Countries in America.<\/li>\n\n\n\n
    • Time<\/u><\/strong>: Between May and July 2024, surveys and course exchanges were completed.<\/li>\n<\/ul>\n\n\n\n

      The survey mode was the assisted self-administration of the questionnaires sent by COA members. Although surveys were individualized with the name of the sender, it is worth pointing out that the answer and final delivery of questionnaires was performed individually, without assistance from any COA member, so that each organization could speak out freely. This measure enhanced the quality of the reported data and opinions.<\/p>\n\n\n\n

      For analysis purposes, WHF material was used: the Annual Global Survey and World Clotting Disorders Registry, as a framework for the samples and information completion provided by the Organizations. Probability sampling 1<\/sup> was used for the \u201cleaders\/pioneers\u201d and \u201csuccessors\u201d groups.<\/p>\n\n\n\n

      \"Knowledge<\/figure>\n\n\n\n

      1<\/sup> Probability sampling is a sample selection method that assures the randomization and \u00a0 representativity of the sample<\/p>\n\n\n\n

      .<\/p>\n\n\n\n

      People providing information through both data collection tools have the following characteristics:<\/strong><\/p>\n\n\n\n

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      • Organization leaders have been in charge of their NMOs for between 1 month and 15 years and show the basic knowledge necessary for accomplishing their tasks, except for two cases (Peru and Trinidad-Tobago), as well as knowledge of culture and institutional history.<\/li>\n\n\n\n
      • Five (5) out of twenty-three (23) organizations have leaders who have held office for more than ten (10) years, personifying the history of difficulties and characteristics of the NMOs.<\/li>\n\n\n\n
      • Eighteen (18) out of twenty-three (23) organizations have leaders with less than four (4) years in office, which indicates that access to relevant positions within the Organization by members and\/or volunteers has been made easier.<\/li>\n\n\n\n
      • The average age of those entering the organizations is 39, mainly as volunteers; later they become members and eventually hold a position in the Board of Directors.<\/li>\n\n\n\n
      • Regarding the leaders, those of five (5) organizations average sixty (60) years of age. In eleven (11) organizations, leaders average forty-five (45) years of age. Out of the remaining reporting organizations, six (6) of their leaders average thirty-three (33) years of age.<\/li>\n<\/ul>\n\n\n\n

        DIMENSIONS, PERSPECTIVES, and STUDY APPROACH<\/strong><\/p>\n\n\n\n

        Both the Questionnaire and the Course were designed to address some of the dimensions relevant to the main issue in the NMOs, i.e. the absence of transition between \u201cleaders\/pioneers\u201d and \u201cnew leaders\u201d.<\/p>\n\n\n\n

        On the one hand, it was important to survey matters related to the situation and conditions of each NMO. Inclusion of young people, women, and volunteers among their members and organization structure was especially relevant. These factors were grouped in a first dimension in the survey and later, by means of several practical works, they were studied in depth in the course.<\/p>\n\n\n\n

        On the other hand, the leaders’ views regarding their organizations were sought, as they were qualified and experienced in their significant roles and therefore able to provide inside information. It is worth stressing that although the leaders’ opinions were always subjective, the course allowed us to appreciate an \u00abobjective\u00bb contrast in the NMOs and identify their level of commitment to COA and WHF guidelines. In this second dimension, it was relevant to survey the NMOs’ present conditions and above all to learn, by means of practical works,  the way members\/volunteers taking part in the course project the future.<\/p>\n\n\n\n

        Finally, the third dimension includes the perception of the present situation (generational gap) and that of the future knowledge transfer processes and generational handover, as well as the difficulties and conditioning factors implied therein.<\/p>\n\n\n\n

        In sum, according to the protagonists\u2019 perspective about life within the organization that enabled them to become professionals in the management of people with clotting disorders, through COA and WHF as well as the pharmaceutical industry, it does not seem that these \u00abpioneers\u00bb are agreeable to the idea of the imminent transition stage, the end of their function as NMO leaders, and a change in their role within the organization.<\/p>\n\n\n\n

        In this interrelation, COA as well as WHF and the pharmaceutical industry are specifically concerned about the handover of responsibilities and accrued knowledge to the new generations of NMO members and volunteers. As is well known, the vicissitudes of each organization and the incidence of each leader have greater or lesser effects when said leaders have to leave their position hastily due to unexpected factors, as has happened.<\/p>\n\n\n\n

        The data and testimonies in this report account for this, and are a vibrant call of attention both to COA authorities and WHF as well as the community involved in clotting disorders, regarding the present situation of the NMOs related to control handover which, in some cases, might seriously compromise the NMO functioning and services.<\/p>\n\n\n\n

        \"Knowledge<\/figure>\n\n\n\n

        .<\/p>\n\n\n\n

        \"Dimension<\/figure>\n\n\n\n

        .<\/p>\n\n\n\n

        \"Dimension<\/figure>\n\n\n\n

        .<\/p>\n\n\n\n

        EXECUTIVE SUMMARY OF THE STUDY<\/strong><\/p>\n\n\n\n

        This study included twenty-three (23) surveyed organizations that address clotting disorders in America, take part in COA, and are National Member Organizations acknowledged by the WHF. It also included fifteen (15) organizations that took part in the Knowledge Transfer course, with members and volunteers qualified for addressing the matter of succession and changes in organization paradigms.<\/p>\n\n\n\n

        It is worth mentioning that both the survey and the course tackled intergeneration issues affecting the organizations at present and the gap between NMO pioneers and the young. The latter is a matter of concern regarding the proper transfer of knowledge between both generations. The main findings appear below.<\/p>\n\n\n\n

        In sum, the young are making a resounding and anguished call of attention to the leaders, Boards of Directors, and older volunteers for them to start a thriving and determined support of the strengthening of the young\u2019s skills in various matters: not only do they want to actively participate but also to have a voice and vote.<\/p>\n\n\n\n

        DIMENSION 1 \u2013 LEADERS\u2019 STATUS AND CONDITION.<\/strong><\/p>\n\n\n\n

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        • The average score of NMOs according to the questionnaire and the survey was 40 over 100. This average shows an interest in the organization\u2019s development and roots, but also that they are still not quite able to amalgamate its parts.<\/li>\n\n\n\n
        • Five (5) NMOs reported that the new goals proposed by COA and WHF were positive and enriched their organizations\u2019 growth and local consolidation. They also considered the increasing inclusion of young people at different levels of the organization as an opportunity.<\/li>\n\n\n\n
        • Eight (8) surveyed organizations admitted not having a strategic plan known by the community. Two (2) deemed it necessary to introduce such a plan.<\/li>\n\n\n\n
        • In most cases, course participants have stressed the importance of having a positive \u201cleader\u201d that shows strength in the face of challenges, learns from his or her failures, and encourages teams to do the same. Thus, successors should be a model for improvement and the achievement of future objectives, even at difficult times for the local community with clotting disorders.<\/li>\n\n\n\n
        • Leaders answering the survey pointed out and emphasized the work of members and volunteers of their organizations as much as that of medical teams and staff accompanying the local community with clotting disorders.<\/li>\n\n\n\n
        • During the course it was possible to identify the fact that many of the tasks undertaken by NMOs are carried out amid criticism, which hinders their local development and performance. In broader sense, when NMOs have had to face commitments out of the country (exchange with other organizations,\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 participation\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 in\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 congresses,\u00a0\u00a0 etc.),\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 they\u00a0\u00a0\u00a0 have\u00a0 difficulty achieving objectives and deviate from COA\u2019s common goals.<\/li>\n\n\n\n
        • Out of the fifteen (15) countries enrolled in the Knowledge Transfer course, ten (10) accessed COA\u2019s Education Platform with more than twenty-five (25) participants in the synchronic classes, showing interest in the matter but reporting difficulties at the time of accessing contents. This denotes that NMOs take advantage of both mode and opportunity but sometimes their contexts and environments are not uniform and there are disparities among organizations and members; consequently, soft content courses should be adjusted to each local reality.<\/li>\n<\/ul>\n\n\n\n

          .<\/p>\n\n\n\n

          Data obtained in the NMO survey show a tendency towards the inclusion of young leaders: eleven (11) NMOs representing 48% of the total have a Youth Committee formed by between two (2) and five (5) members. When asked whether members between eighteen (18) and thirty-five (35) have taken part in WHF and COA training sessions and workshops, 100% of said organizations answered affirmatively. But when these eleven (11) organizations were asked whether members between eighteen (18) and thirty-five (35) received training to work in their NMOs, three (3) answered negatively.<\/p>\n\n\n\n

          It is commendable that the twenty-three (23) NMOs, especially those that boast a Youth Committee, deem it important to increase young people\u2019s participation in training and workshops, identifying strengths and encouraging them to take part in projects.<\/p>\n\n\n\n

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          • In that sense, when the leaders surveyed have been asked for their opinion about the existence of members capable of being their successors, their answers have been as follows: 100% have said that knowledge transfer is indeed important; 50% report the inclusion of young people in their organizations; 26% answered negatively, and 38% see this matter as transversal but lack a Protocol or line of action to carry out the succession process.<\/li>\n\n\n\n
          • The course has evidenced each leader\u2019s commitment to their young and the likelihood that these \u201cnew leaders\u201d should implement critical thought and active participation. Only 13% of the total organizations have been able to carry out an unconditioned and thorough SWOT matrix and implement it methodologically. Twenty-two percent of the total organizations have identified Strengths, Weaknesses, Opportunities, and Threats sporadically but without a critical analysis of the best ways to revert both Weaknesses and Threats. The remaining 65% considered organizational introspection an unnecessary action and were indifferent towards this proposal.<\/li>\n<\/ul>\n\n\n\n
              \n
            • Last but not least, the leaders\/founders and those with more than ten (10) years in the Board of Directors show resistance to exchanging positions with their members or volunteers between eighteen (18) and thirty-five<\/li>\n<\/ul>\n\n\n\n

              (35). Said leaders represent 13% of the total organizations and despite looking favorably upon the inclusion of young members, they relegate them to secondary positions in the organization. This situation is replicated in 100% of the total organizations when asked about the age of their Board of Directors, which ranges between thirty-five (35) and forty-five (45). It is worth mentioning that in 61% of NMOs the number of Board members ranges six (6) to ten (10); 26% have less than five (5) and only 13% have more than ten (10).<\/p>\n\n\n\n

                \n
              • By drawing a comparative parallel with course attendance levels, it is possible to see why some organizations have been more proactive towards change than others and the way their leaders deem organizational growth hand in hand with the young necessary, understanding that inter- and trans-generation work leaves nobody behind; on the contrary, it enhances knowledge in each of the members and volunteers in the NMO.<\/li>\n<\/ul>\n\n\n\n

                DIMENSION 2: FACTS ACKNOWLEDGED BY NMOs<\/u><\/strong><\/p>\n\n\n\n

                Teaching the course allowed us to see clearly what the role and contribution of the organizations are towards the community with clotting disorders in their respective countries, and how relevant the influence of the State is in the achievement of their goals. On performing the SWAT matrix as well as the strategic SMART plan as a SWAT, more than half the NMOs found the State accountable for the problems they have to face, mainly due to their dependence in the short-, medium- and long-term. Two (2) out of every five (5) organizations foresee the actions of the Ministry of Health in their countries, in the short- and medium-term, as a problem for early detection and fair access to treatment. The effect of government measures, in general, related to the community with clotting disorders is of high impact. Everyone has stated, to a greater or lesser extent, that they have connections with and access to the decision-making authorities, but at the time of measuring impact among patients, the extent of their involvement is negative, detrimental, and in some cases, devastating. Although 80% of the NMOs have connections with some stratum of the State involved in public policies for people with clotting disorders, they cannot say that said policies are the expected ones or the most efficient for the community they represent.<\/p>\n\n\n\n

                Along these lines, five (5) out of every ten (10) organizations submit technical reports to the authorities that make decisions about the purchase of medicinal products, but when it becomes clear that not everyone (men, women, children) has access to the correct medication, the impact is clearly not the expected one.<\/p>\n\n\n\n

                  \n
                • Course participants see that those taking part in the lobbying actions aimed at strengthening the commitment of local leaders are \u201carbitrarily\u201d chosen, without seeking consensus of members and volunteers who \u201cpush for transformation\u201d; and in view of the scarce level of exchange, the possibility of getting successful results becomes much harder.<\/li>\n\n\n\n
                • Seventy-five percent of the organizations expressing these views have received with pleasure the information provided about key concepts in clotting disorders, medical care principles, therapeutic products, purchase models (bidding processes), and training in economics. However, in spite of the time invested, the expected successful results are often not achieved due to difficulties in trans-generational handover.<\/li>\n\n\n\n
                • In a broad sense, we believe that founding or pioneer leaders have handed down to the present generations some \u201cmust be\u201ds and \u2018\u201dstatus quo\u201ds that cannot be modified as they are considered a \u201clegacy stated by emotions, beliefs, behaviors, and habits\u201d.<\/li>\n<\/ul>\n\n\n\n
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                  • For this reason, two (2) out of every five (5) NMOs are promoting the creation of spaces for the young and, likewise, all of them agree that it is paramount to form committees with women participation, not as \u2018carriers\u2019 but as individuals rightfully entitled to receive integral care and access to treatment as any other person with clotting disorders.<\/li>\n\n\n\n
                  • Nine (9) out of ten (10) participants in the course have stated that the founding leaders, pioneers, or current managers have an \u201caltruist profile<\/strong>\u201d: they are committed and available, and offer their assistance either personal or economic, but lack the necessary empathy with the community as a whole.<\/li>\n\n\n\n
                  • Eight (8) out of every ten (10) participants in the course have put forth that there should be an economic incentive for NMO members and volunteers responsible for securing access to adequate diagnosis and correct treatment for both men and women. They are aware of budget restrictions in their organizations but consider that it is very difficult to carry out improvement actions without full- or part-time commitment to the achievement of their goals.<\/li>\n\n\n\n
                  • Currently, one (1) out of every two (2) NMO volunteer members has a training profile, varied interests, and good knowledge of Third Sector organizations, but is not allowed a voice by the decision makers. The same happens with the young, as four (4) out of every five (5) NMOs find it difficult to get in touch and attract them to the fulfillment of their goals.<\/li>\n\n\n\n
                  • Youngsters (Generation Z \u2013 1999 to 2012) attending the course have shown good perception of the mission, vision, values, and goals of their organizations, but think they should be more dynamic, updated, and closer to the realities they are faced with. They are interested but not usually committed.<\/li>\n\n\n\n
                  • On the contrary, Generation X (1965 to 1980) see as a vital point the shaping of a cycle leading to age integration: each stage should end handing down a legacy to future generations.<\/li>\n<\/ul>\n\n\n\n