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A flow chart showing the process of setting up a collaboration. The process of setting up a collaboration begins with considering the purpose of a collaboration; only collaborate if there are reasons to. Potential collaboration partners should then be identified; this process may take time. Following the identification of your partner(s), every organisation involved should understand the purpose of the collaboration. Make sure this has been properly discussed before moving on. A terms of reference agreement should then be considered; further advice may be required when performing this step. Finally, you will be ready to start thinking about the first meeting of the collaboration.

(A terms of reference agreement is a document to lay out how the collaboration will work and the key responsibilities of each organisation).

Determining the Purpose of the Collaboration

The first step in setting up the collaboration is to consider its purpose. Important questions to ask include:

• What does your organisation want to gain from the collaboration?
• What goals could be achieved in a collaboration that would be difficult on your own?
• How will the collaboration put patients at the centre?
• What skills and expertise would your organisation like to gain from the collaboration?
• How many organisations should be invited to the collaboration?
• Will the collaboration align with your goals as an organisation?

Don’t be afraid to start small; a small, well defined project which benefits all collaborators is a great place to start. It may allow all parties to learn how to work together and build on your successes with further, more far reaching collaborations in the future. Once you have established the purpose of the collaboration, it is time to decide who you will partner with.

Identifying Collaboration Partners

If you can identify other organisations working with the same patient population, then there may be an obvious choice for a collaboration partner. However, this is not a decision you should rush. Try and think carefully about the type of organisation you would like to collaborate with. Important questions to consider may include:

• Do you want your collaboration to be small, with one or two partners who have very similar goals, or do you want it to be a larger collaboration, perhaps within a wider disease area?
• Do you want to partner with a patient group or a charity or both?
• Do you want to partner with a small or large organisation?
• Do you want to partner with an organisation in a different part of the world?
• Does the potential partner have similar values, vision or goals?

If your patient community is particularly small, there may not be any other organisations working in the same disease area. Therefore, when identifying your partner(s), you may want to look for a patient organisation that focuses on a disease area that has a similar mechanism or genetic cause. While this type of collaboration may be more difficult to form as the organisations may have more differences in end goals and priorities, working in slightly different patient populations can help reduce potential disagreements or conflicts of ideas. This is because overlapping of work is less likely, making it easier to assign clearly defined roles.

Terms of Reference

Once you have identified your collaborating partner(s), it is worth considering whether a terms of reference document is needed. This document is an agreement and understanding of how the collaboration will work.

An example structure for a terms of reference agreement is outlined below:

1. Purpose and Objectives: Outline the specific issues in the disease area that you will be addressing.
2. Mission Statement: Agree on a common goal and write a shared mission statement on behalf of the whole collaboration. This will ensure that every person is on the same page and working towards a common goal.
3. Membership: Define who the collaboration consists of and whether you will be open to including more organisations.
4. Roles and Responsibilities: Define the roles for each organisation and who will be representing each organisation.
5. Methodology: Outline how you will address the specific areas that you are focusing on.
6. Logistics: State how the members of the collaboration will meet and share resources. This is particularly important for rare diseases because you are likely to be working with confidential information and limited funding.

It is important to note that the terms of reference document is not a legal agreement. However, if you feel that a more formal legal agreement would be beneficial, it is possible for each organisation involved to sign a contract which will be legally binding and enforceable in a court of law. You may find that as the collaboration progresses, accessing funding becomes harder if there is not a legal agreement between the organisations. You should seek legal advice when considering putting a legally binding agreement in place, such as TrustLaw, a programme which provides free legal assistance to non-profit organisations.