Do Your Research

Gathering evidence

Regulatory Overview

In order to be able to advocate for a change in policy, it is firstly essential to know the current state of play.

A regulatory overview is an analysis of all the existing laws that are relevant to your cause. Depending on where you are from, there may be local, state, federal, national, and/or international laws to consider.

Some useful information to gather about existing laws include:

1. When was the law published?
2. When will the law be changed/amended/revised?
3. Which government department/body is responsible for drafting the law?
4. Who is in charge of that department/body?
5. Which institution can challenge this law once implemented? (ECJ, National Courts, etc.)

This task in itself can be monumental, and sometimes it may be prudent to ask for expert help. There are professional bodies, companies, institutes, and other charities in different disease areas of societal groups who have experience that may be transferable to your particular advocacy issue.

While societal groups and charities are often willing to help, you may be put off asking for help from a for-profit company due to cost. Do not let this put you off as it is possible to ask for pro bono assistance from experts, many corporations and institutions offer assistance and advice as part of their Corporate and Social Responsibility (CSR) programmes. Some have listed the areas of interest on their websites and so it is always worth checking this as a possibility.

Existing Data

In addition to existing policy, make sure that you are up to date on studies and findings that will support your argument. Sources of these may include:

1. Experimental research findings – qualitative or quantitative
2. Systematic or rapid reviews and meta analyses
3. National or international policy or programme evaluations
4. Existing statistics – data from patient registries, census data, OECD figures etc.
5. Consensus expert opinion
   6. Stakeholder consultations
   7. Testimonials or case studies
   8. Costings of policy options

It is also important to be aware of any data that might conflict with your policy proposal. Be prepared to defend your argument and address these issues.

Generating evidence

In some cases, the evidence you need in order to best argue your case might not even exist. Here, conducting your own research, and generating the necessary data may be a viable and important option.

Here are some tips when setting about conducting your own research:

1. Familiarise yourself with the issue as much as possible. Discuss with all stakeholders and develop a clear understanding of the evidence gap.
2. Assess and prioritise the value of existing evidence.
3. Involve the communities (usually patients) that the outcomes of the research will impact, as soon as is reasonably possible
4. If your research project is quite large, consider creating a steering committee, with representation from key stakeholder groups.
5. Develop your research question and ensure that the project design will appropriately address your question.
6. Identify your research participants, and decide on any inclusion or exclusion criteria.
7. Give consideration to all ethical matters
8. Identify potential collaborators.
9. Prepare a budget and consider funding
10. Plan for how you will evaluate the success of your research project and its impact on your advocacy.