Starting a broad family health history initiative in your community can be daunting. If you don't know where to begin, this section is the perfect place to get your bearings. It will help you pinpoint your audience, your purpose, and the resources you will need to offer participants.
Have you written out defined goals for your initiative?
Writing out specific goals will help you focus on exactly what you want to accomplish. By having goals written out, there can also be consistency among the different projects/activities your organization conducts. The best way to define your goals is to have your organization work together - this will enable communication about the priorities and direction of your initiative, as well as consensus about language.
Who is your audience?
It is important to know who your audience is so that the most effective process can be utilized when delivering information. A good understanding of your audience will help tailor your initiative into an issue to which members of your community can relate. Also, by knowing your audience you learn what is important to them and what perspective you should focus on.
What is your message to the community?
Before addressing the community you must have a solid hold on your exact message. Your message, like your goal, is your guide for future actions. If you are uncertain about your message, there is no way for your audience to accurately understand what you present, and they will be less likely to want to become involved.
Are you trying to increase dialogue about health in families?
When you want to increase dialogue, it is important to raise questions that people can and are willing to discuss. Also, it is important to incorporate different activities into the discussion to encourage the exchange of ideas. Instead of simply presenting information like a teacher in front of a classroom, you could hold interactive information sessions or forums on different aspects of family health history to promote conversations.
Do you want to increase community knowledge about genetics?
If your goal is to increase understanding about genetics, the first step should be to assess the level of current understanding in your community. It will then be important to tailor information to the comprehension and comfort levels of your audience. Genetics can be a sensitive topic, so you must know your audience in order to decide what kind of information should be distributed and what the best avenue for distribution is. From there, you can also determine the level of depth of knowledge required, from basic genetics to specifics about particular conditions.
Is your focus getting information to a health care provider?
If your focus is on educating health care providers, more complex information regarding family health history and genetics can be presented. In addition, you can supply members of your community with forms that they can bring to their health care providers – for example, a family health history chart – that will teach the provider about the information contained on the form, as well as emphasize that the information is important to collect, something not all health care providers know.
Is your goal to provide risk assessment or scoring?
To score or provide an assessment of any type of information, there are additional procedures and materials that need to be developed. When collecting information from the community, a consent form is needed to show that the person understands what information they will be given and how it will be used.
Do you want every person to have a family health tree (pedigree) when they are finished?
Knowing what you want as the end product of your initiative will help you plan the project itself. You must then provide everyone with the materials to complete the product, along with understanding of why it is important to have that product. For example, if the goal is to have everyone make a family health tree, materials should be provided to guide participants through the process. This includes specific instructions on putting together a family health tree or access to software that can compile that type of information. It would also be helpful to show people a sample pedigree so they have an idea how their own should look. In addition, it is important to demonstrate the benefit of having a full family health tree as a reference for general family history, not only for health information. Showing the multiple benefits and uses of the family health tree will encourage more people to participate.
Do you want to collect data from those participating? What type of data?
The people that will give you the best information are probably your parents, siblings, and children. After this you can move onto your extended family. You should be aware of basic information like ethnicities, birthdates, and birth locations. Also, if you discuss deceased relatives it is helpful to know their age and cause of death. General information that may be helpful includes occupation, exercise habits, activities, diet, and habits (i.e. smoking, drinking, etc.). Then, of course, collect data on their health history including diseases that they have or that they know have run in the family. Conditions such as Alzheimer's, asthma, vision loss, cancer, heart disease, and high blood pressure are known to have genetic components. Also relative to health conditions are surgeries, immunizations, and pregnancies.
Is this a trial run for a larger initiative?
If this project is a trial run there are a few important aspects to consider. First, the number of participants is not as important as the type of people you enroll. Be sure that your target audience for the larger initiative is included in the trial. The trial run is a good time to figure out the best approaches to recruiting your desired population. Also think about the specific outcomes you would like to see in your community and whether or not those outcomes are feasible. This time can be used to see what gaps there are in communicating your message and what can be done to smooth the process during the larger initiative.