Resources > Blog > February 17, 2021

Creating a Community Health Assessment for Parkinson’s

Community Health Assessments (CHAs) are used by hospitals, local governments, public health officials, and community groups to collect data about the health needs of local people, inform initiatives to address these needs, and measure changing needs over time. As a part of our Healthy Parkinson’s Communities™ initiative,  Community Action Committees (CACs) are encouraged to seek similar data to shape actions big and small that can be taken to improve quality of life for people living with Parkinson’s.

In this post, we’ll share ways to begin collecting data in your community. We’ll also explain some best practices for surveying and provide a list of questions you can pull from when drafting your assessment tool.

#1 – Look into existing data and resources

There are many different sources to find data about dimensions of health, livability, hospitals, health rankings, and clinical indicators in your community. While none of these will be Parkinson’s specific, they can shed light on basic community health issues including effectiveness of local healthcare, economic issues, transportation, access to healthy food and clean water, etc.

#2 – Think about your audience

To get good data, you need good responses. To get good responses, you need to create an assessment that is accessible, intuitive, and easy to complete for your specific audience.

For people living with Parkinson’s, take into consideration motor symptoms that affect interactions with an assessment tool, as well as cognitive challenges that make it challenging for some people with Parkinson’s to respond. Keep your survey short, simple, readable, and easy to fill out. While digital survey tools like Survey Monkey are a great and inexpensive way to distribute your survey widely, you may also want to consider having a hard copy option or even a phone line where people can call in to respond to questions. Also, consider whether you should offer your survey in a language other than English. Ask for support from a local translation service to ensure your survey is properly translated both linguistically and culturally.

#3 – Think about your distribution plan

Think about who you want to distribute this survey to and how to reach them. We encourage you to think outside of your immediate circle and consider how to survey a diverse group. Depending on your community, this may mean including people of varying economic status, race and ethnic background, gender, and living situations. It takes more effort to be inclusive, but it will also offer you far more insight into what your community needs and how you can be truly effective with your initiatives.

Spend some time reaching out to local coalitions for diverse communities, safety net hospitals, local assisted living communities, YMCAs, LGBTQ centers, local recreation centers, libraries, community centers, churches, temples, synagogues, mosques, and more to help diversify your potential data pool. You can see if these local groups are willing to share a link to your survey in an email newsletter, display flyers, or, when it’s safe, even let you set up a table for a few hours once or twice a week to let people come to you to complete their surveys.

#4 – Get specific about what you want to learn

To keep your survey short and easy to complete, narrow down what you want to learn. Think about what you learned when you explored existing data and about the audience in your area. You can probably start to make broad assumptions about what areas you’d like to learn more about to gain insight into the needs and barriers that exist in your community. This is a fine balance to walk – to get specific about what you want to ask without making too many assumptions that add bias to your survey.

Don’t get too hung up on this, though. Surveying is more art than science in many ways. Focus on creating the best tool you can and getting it distributed. You’ll learn plenty even if it isn’t perfect, and you can always conduct another survey or arrange focus groups or a townhall meeting to continue to collect information you need.

#5 – Create your survey

There are many places online to find survey inspiration. To get you started, we have also created a list of sample questions for you in the following categories: Infrastructure, Wellness, Community, Medicine, Advisors/Advocates, Empowerment/Agency, and Financial Support. Once you have drafted your survey, test it with a small group to get feedback before you distribute it more broadly.

#6 – Review and interpret your findings

We’ll dig more into understanding your data in future posts, but as you begin to look at your data, we encourage you to keep the following in mind:

  • Avoid jumping to solutions right away
  • Make note of any questions the data bring up for you
  • Identify jumping-off points for another level of assessment such as interviews, focus groups, or townhall meetings. Or use these jumping-off points as agenda items for upcoming CAC meetings to think through how you want to address what you see as new opportunities

Additional Resources

This Community Toolbox chapter is an excellent and comprehensive resource that shares more about what a health assessment is, why you should consider conducting one, and how to conduct your assessment.

This page from the Association for Community Health Improvement™ dives deeper into different data sets and provides more information about various data collection methods, including surveys, interviews, focus groups, and townhalls.

The Diverse Elders coalition brings together national coalitions for aging members of the AAPI, Black, Hispanic, American Indian, and LGBTQ communities. These groups can help provide insight and connections as you look to diversify your pool of responses.

The University of Wisconsin Population Health Institute offers this resource to help you improve your data fluency as well as many others to help you get started making change in your community.

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This is one of many posts that will be geared toward helping you create sustainable change in your community. Keep up with these resources and the rollout of the Healthy Parkinson’s Communities initiative by subscribing to our Community Leaders Newsletter.