A case of community A case of community dissemination when dissemination when research is over in research is over in

MalawiMalawiJoseph Mfutso-BengoJoseph Mfutso-Bengo

Center of bioethics for Center of bioethics for southern & Eastern Africa-southern & Eastern Africa-

CEBESACEBESA

IntroductionIntroduction Engaging communities in biomedical research Engaging communities in biomedical research

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

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

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

Introduction continuesIntroduction continues

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

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

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

Objectives of dissemination workshopsObjectives of dissemination workshops To disseminate Phases 1 & 2 results of To disseminate Phases 1 & 2 results of

Bioethics Research Project to research Bioethics Research Project to research participants & research staff in Madziabango, participants & research staff in Madziabango, Mpemba, Bangwe in BT & UNC Tidziwe Mpemba, Bangwe in BT & UNC Tidziwe Centre in LL.Centre in LL.

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

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

Analysis of the workshopsAnalysis of the workshops Workshops were a good experience.Workshops were a good experience.

Was a wonderful reunion with research Was a wonderful reunion with research participants & research staff.participants & research staff.

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

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

Issues that came out Issues that came out Social responsibility of researchersSocial responsibility of researchers

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

-Called on researchers to be very responsive to the -Called on researchers to be very responsive to the needs of communities/HC where they conduct needs of communities/HC where they conduct research e.g.research e.g. dig boreholes in communities where water is a dig boreholes in communities where water is a

problemproblem Donate drugs to the HCDonate drugs to the HC Give a hand in providing services at HC Give a hand in providing services at HC

Issues that came outIssues that came out Social responsibility of researchersSocial responsibility of researchers

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

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

a problema problem Donate drugs to the HCDonate drugs to the HC Give a hand in providing services at HC Give a hand in providing services at HC

Why do people refuse to Why do people refuse to participate in research?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

Issues that came out Issues that came out continuedcontinued

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

Issues that came out Issues that came out continuedcontinued

Desperation of research Desperation of research participants to access medical participants to access medical treatmenttreatment-Participants noted that most research -Participants noted that most research

participants choose to participate in participants choose to participate in research out of desperation for medical research out of desperation for medical treatment & hence, don’t pay attention to treatment & hence, don’t pay attention to consent proceduresconsent procedures

---Recommended that consent process should -Recommended that consent process should

be ongoing throughout researchbe ongoing throughout research

Issues that came out Issues that came out continuedcontinued

Dissemination of research resultsDissemination of research results- Participants appreciated the need to give a - Participants appreciated the need to give a

feedback of research results to participantsfeedback of research results to participants- Requested that it should become a norm for - Requested that it should become a norm for

researchers to disseminate research results researchers to disseminate research results after research is overafter research is over

- Feel it’s their right to know research results- Feel it’s their right to know research results- Results of research that takes long to complete - Results of research that takes long to complete

to be disseminated in phasesto be disseminated in phases

Rules of community Rules of community engagementengagement

Not every interested person is a Not every interested person is a stakeholderstakeholder

The community can help identify real The community can help identify real stakeholdersstakeholders

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

Conclusion continuesConclusion continues

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

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

Benchmarks include;Benchmarks include;– Community Consultation/permissionCommunity Consultation/permission– Community SensitizationCommunity Sensitization– Community Involvement / OwnerhsipCommunity Involvement / Ownerhsip– Community Feedback/ Dissemination of Community Feedback/ Dissemination of

research resultsresearch results

Part of the CEBESA Team Part of the CEBESA Team

Thandi distributing the handoutsThandi distributing the handouts

Participants looking at the leafletsParticipants looking at the leaflets

Mr. Masiye stressing a pointMr. Masiye stressing a point

Part of the research staff that attended one Part of the research staff that attended one workshopworkshop

GratitudeGratitude Thank you all for listening!!Thank you all for listening!!