The dual role
Community member and team member at once
Tensions, advocacy, protocol adaptation, supervision, boundaries and the right to say no.
You are a community member and a member of the research team. Both are true at once. The role does not ask you to choose, and it does not remove the conflict. It gives you a place to bring it.
Why the tension is structural
The community interest and the research requirement do not always agree. A community may want the study to address the problem it feels most urgently. The study has a funded question and an approved protocol. A participant may want advice that the study cannot give. The team needs the data to be comparable, and comparability often removes the flexibility a community needs.
The IBISES model does not treat this as a personal failing of the link worker. It builds a place to discuss it: supervision sessions where the conflict between community interests and research requirements is a standing agenda item.
Four tensions you will meet
With the response that protects you
- Access versus protection. Researchers want entry. The community wants to know its members will not be harmed. Answer: name the safeguards, and let the community organisation hold the gate.
- Speed versus trust. The funder's timeline is short. Trust takes months. Answer: say the true timeline out loud, and negotiate what is possible rather than promising what is not.
- Standardisation versus cultural fit. A fixed protocol is easier to analyse. A culturally adapted one is easier to use. Answer: record every adaptation in the study log, so the team can see what changed and why.
- Advocacy versus neutrality. You are asked to represent a view you disagree with, or to stay neutral when the community is angry. Answer: separate the roles out loud. In a session you facilitate. Outside it you may advocate, in your own name.
Advocacy inside the team
The model established clear protocols that put community welfare first while keeping research integrity, and gave link workers a mechanism to raise community concerns inside the team. That mechanism is only real if it has four properties.
- It is named: a person, or a meeting, where concerns go.
- It is quick: a route that does not take a month.
- It can change something: protocol adaptations were the normal outcome in the case studies, not a failure.
- It is recorded: what was raised, what was decided, why.
Protocol adaptation, done properly
Five rules
- Adapt implementation, not the science, unless the team agrees and the approval allows it.
- Write down every adaptation, with the reason and the date.
- Check whether the ethics approval covers the change. If it does not, stop and ask.
- Tell the whole team, not only the person you spoke to.
- Include adaptations in the report. They are findings about feasibility.
Boundaries
Boundaries protect the community, the study and you. State them early, in plain words, to participants and to colleagues.
- You are not available at all hours. Give the study's contact route, not your personal number, unless the study agrees otherwise.
- You do not give clinical, legal or benefits advice.
- You do not pass on what a participant said to their family, their employer, or a professional.
- You do not use your role to settle a community dispute.
- You do not take on work outside your training because the team is short of time.
Saying no
The right to refuse a task is a competence, and it is assessed. It protects the study from a mistake and protects you from being blamed for one.
Three refusals, and how to phrase them
- Outside training: "I am not trained to take blood pressure readings. I can hold the queue and the forms, or we can move that task to someone trained."
- Outside approval: "The protocol does not cover me interviewing people who lack capacity. I will pause and ask the lead."
- Outside the agreement: "That is four extra sessions this month. My agreement covers six hours. Can we agree the extra time and pay before I start?"
Notice the shape: name the limit, offer what you can do, and put the decision where it belongs.
When the team asks you to be the community voice
A common failure is the invitation to speak for a whole community. You speak from your experience and your knowledge. You do not represent everyone.
Useful words: "I can tell you what I have heard from the people I work with, and I can tell you who else you need to ask." That answers the request without accepting a mandate you do not hold.
Supervision: what to use it for
- A conflict between what the community wants and what the study needs.
- Something you heard that troubles you, and the safeguarding route taken.
- What you would do differently next time.
- A task you are being asked to do that is outside your training or your agreement.
- Your own wellbeing after a hard session.
Supervision is not a performance review. If it becomes one, say so: the model depends on honesty about difficulty.
The test of understanding
Your community organisation wants the study to add a question about a local service. The protocol does not include it, and the team says no because the analysis is fixed. What do you do?
Take it to supervision and ask for a route. Options the team can consider: put the question in a separate co-design discussion and report it as contextual material; record it as a recommendation for the next study; ask whether a protocol amendment is possible and proportionate. Do not add the question on your own, and do not tell the community it is agreed. Report back what was decided and why.