A case of community dissemination when research is over in Malawi Joseph Mfutso-Bengo Center of bioethics for southern & Eastern Africa-CEBESA

Introduction Engaging communities in biomedical research is an ethical requirement for research involving human subjects (CIOMS, Nuffield Council on Bioethics). Community engagement (CE) is a critical aspect of planning & implementing biomedical research. Disseminating results to research communities after research is over is one of the import aspects of CE.

Engaging communities in biomedical research is an ethical requirement for research involving human subjects (CIOMS, Nuffield Council on Bioethics).

Community engagement (CE) is a critical aspect of planning & implementing biomedical research.

Disseminating results to research communities after research is over is one of the import aspects of CE.

Introduction continues To comply with this requirement, CEBESA organized dissemination workshops btwn 10th March & 17 th April, 2008. Workshops were held in Maziabango, Mpemba and Bangwe in BT & UNC Tidziwe Centre in LL. Were attended by 32 health workers/research staff & 128 research participants including community leaders.

To comply with this requirement, CEBESA organized dissemination workshops btwn 10th March & 17 th April, 2008.

Workshops were held in Maziabango, Mpemba and Bangwe in BT & UNC Tidziwe Centre in LL.

Were attended by 32 health workers/research staff & 128 research participants including community leaders.

Objectives of dissemination workshops To disseminate Phases 1 & 2 results of Bioethics Research Project to research participants & research staff in Madziabango, Mpemba, Bangwe in BT & UNC Tidziwe Centre in LL. To discuss results with research participants & health/research staff of the 3 HCs & UNC. To encourage further discussion on major challenges in conducting biomedical research in areas with limited resources.

To disseminate Phases 1 & 2 results of Bioethics Research Project to research participants & research staff in Madziabango, Mpemba, Bangwe in BT & UNC Tidziwe Centre in LL.

To discuss results with research participants & health/research staff of the 3 HCs & UNC.

To encourage further discussion on major challenges in conducting biomedical research in areas with limited resources.

Analysis of the workshops Workshops were a good experience. Was a wonderful reunion with research participants & research staff. Participated actively in the meetings - Made comments & asked questions. Commended Bioethics team for remembering them & being exemplary in disseminating results.

Workshops were a good experience.

Was a wonderful reunion with research participants & research staff.

Participated actively in the meetings - Made comments & asked questions.

Commended Bioethics team for remembering them & being exemplary in disseminating results.

Issues that came out Social responsibility of researchers -Participants noted that most of the researchers that conduct research in their communities & HC don’t care about their social problems - they leave the communities/HC as worse as before -Called on researchers to be very responsive to the needs of communities/HC where they conduct research e.g. dig boreholes in communities where water is a problem Donate drugs to the HC Give a hand in providing services at HC

Social responsibility of researchers

-Participants noted that most of the researchers that conduct research in their communities & HC don’t care about their social problems - they leave the communities/HC as worse as before

-Called on researchers to be very responsive to the needs of communities/HC where they conduct research e.g.

dig boreholes in communities where water is a problem

Donate drugs to the HC

Give a hand in providing services at HC

Issues that came out Social responsibility of researchers -Participants noted that most of the researchers that conduct research in their communities & HC don’t care about their social problems - they leave the communities/HC as worse as before -Called on researchers to be very responsive to the needs of communities/HC where they conduct research e.g. dig boreholes in communities where water is a problem Donate drugs to the HC Give a hand in providing services at HC

Social responsibility of researchers

-Participants noted that most of the researchers that conduct research in their communities & HC don’t care about their social problems - they leave the communities/HC as worse as before

-Called on researchers to be very responsive to the needs of communities/HC where they conduct research e.g.

dig boreholes in communities where water is a problem

Donate drugs to the HC

Give a hand in providing services at HC

Why do people refuse to participate in research? Failure to follow traditional customs Fear of strangers Superstition and blood drawing Poor informed consent procedure Lack of study benefits Ignorance of health research Lack of cultural sensitivity Poor timing

Failure to follow traditional customs

Fear of strangers

Superstition and blood drawing

Poor informed consent procedure

Lack of study benefits

Ignorance of health research

Lack of cultural sensitivity

Poor timing

Issues that came out continued Sensitization of communities - Participants complained that some researchers don’t sensitize communities before they conduct their research (in the communities or at the HC). - Researchers just consult Chiefs and then start doing their research. -The chief is not the only stakeholder -Felt this was unwelcome & called on researchers to engage communities b4 conducting research in their communities/HC.

Sensitization of communities

- Participants complained that some researchers don’t sensitize communities before they conduct their research (in the communities or at the HC).

- Researchers just consult Chiefs and then start doing their research.

-The chief is not the only stakeholder

-Felt this was unwelcome & called on researchers to engage communities b4 conducting research in their communities/HC.

Issues that came out continued Desperation of research participants to access medical treatment -Participants noted that most research participants choose to participate in research out of desperation for medical treatment & hence, don’t pay attention to consent procedures - -Recommended that consent process should be ongoing throughout research

Desperation of research participants to access medical treatment

-Participants noted that most research participants choose to participate in research out of desperation for medical treatment & hence, don’t pay attention to consent procedures

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-Recommended that consent process should be ongoing throughout research

Issues that came out continued Dissemination of research results - Participants appreciated the need to give a feedback of research results to participants - Requested that it should become a norm for researchers to disseminate research results after research is over - Feel it’s their right to know research results - Results of research that takes long to complete to be disseminated in phases

Dissemination of research results

- Participants appreciated the need to give a feedback of research results to participants

- Requested that it should become a norm for researchers to disseminate research results after research is over

- Feel it’s their right to know research results

- Results of research that takes long to complete to be disseminated in phases

Rules of community engagement Not every interested person is a stakeholder The community can help identify real stakeholders The bigger the risk and research benefit the bigger the need to engage the community

Not every interested person is a stakeholder

The community can help identify real stakeholders

The bigger the risk and research benefit the bigger the need to engage the community

Conclusion continues Enlightened by the outcome of the workshops, CEBESA has developed 4 benchmarks for CE The benchmarks are intended to strengthen mutual understanding btwn communities & research institutions/researchers Benchmarks include; Community Consultation/permission Community Sensitization Community Involvement / Ownerhsip Community Feedback/ Dissemination of research results

Enlightened by the outcome of the workshops, CEBESA has developed 4 benchmarks for CE

The benchmarks are intended to strengthen mutual understanding btwn communities & research institutions/researchers

Benchmarks include;

Community Consultation/permission

Community Sensitization

Community Involvement / Ownerhsip

Community Feedback/ Dissemination of research results

Part of the CEBESA Team

Thandi distributing the handouts

Participants looking at the leaflets

Mr. Masiye stressing a point

Part of the research staff that attended one workshop

Gratitude Thank you all for listening!!

Thank you all for listening!!