17 Primary Data

Primary data is new data, mostly subjective, that you gather in order to contribute to your assessment of the community and the understanding of an issue. The ability to gather meaningful primary data is directly related to the effectiveness of your engagement. The more effective your engagement, the more meaningful the data.

Remember, your goal is to get as close to the experience of the issue or problem as possible so that you can gain an understanding of the assets that could be enhanced, as well as the reasons for the problem or issue to exist.

Be cautious when contacting people so that you are not exploiting them at a time of crisis. For example, if you want to understand the strategies and resources that are helpful to people in your community during a time of mental health crisis, you should wait until the crisis has been resolved or they are in a period of recovery before attempting to engage with them. You need to be careful so you are not putting someone at risk by engaging with them as a source of primary data.

This is why organizations have Institutional Review Boards (IRBs) which review plans for human subject research. Their primary role is to evaluate the research plan to avoid unnecessary risks to people, particularly those considered most vulnerable to harm (children, people with disabilities, pregnant people, incarcerated individuals, etc.).

The first step in gathering primary data is identifying what else you need to understand about the community to complete your assessment.  So, begin by reviewing your stakeholder list and asking yourself: Who could help answer these questions? Who has a story to tell about their community that would help us understand it more clearly? Who else is working on this issue? Who should we be listening to and collaborating with?

Data Gathering Strategies

There are many strategies for gathering primary data; each will be described here and in more detail in the chart at the end of this chapter.  You can also find more in-depth information about most of these data-gathering strategies at YPAR Hub, which started through an ongoing partnership between the University of California, Berkeley, and San Francisco Peer Resources.

I recommend using a combination of data-gathering strategies and spending enough time in the planning phase, especially with questions you may be asking, to ensure you are able to gather valuable insight into the community problems you are examining.

Types of Primary Data Gathering Strategies:

  • Focus groups: Meeting with a group of stakeholders to gather their perspectives about community conditions. Typically, the stakeholders have their own individual experiences with the problem at hand. Their shared background enhances their trust and comfort in sharing their ideas with other people.
  • Interviews: One-on-one meeting to gather perspective on community conditions.
  • Observations: Intentional and systematic process of watching and documenting groups, phenomena, or behaviors.
  • Surveys: Soliciting input from stakeholders by asking them questions which are responded to either via paper or electronic format.
  • PhotoVoice: Photos that are intended to capture an idea or a phenomenon, typically taken by the stakeholders themselves. The photos give a ‘voice’ to an idea or experience.
  • Stories/Vignettes: A detailed narrative expressing someone’s first-hand experience or observation that is related to the community condition being examined.
  • World Café: A World Café is a specific method of engaging a large group of people in an intentional, action-oriented dialogue. There are 5 primary components to a café but the process is intended to be modified to fit the purpose of the person or group gathering insights. The components are: setting, welcome and introductions, small group rounds, questions, and harvesting of information. More detailed information can be found at The World Café.

Example: Assessment of Behavioral Health Crisis Care in Northeast Minnesota

In 2017, our team embarked on an assessment of behavioral health crisis care in Northeast Minnesota and sought to gather as much insight as possible into the experience of seeking care during a time of mental health crisis. Since providers of mental health care are more likely than consumers to have opportunities to share their experiences and ideas for change, our goal was to hear from more people who needed care than those who were involved in the delivery of care.

After carefully reviewing and analyzing national, state, and regional secondary data, we set out to facilitate what we called “listening sessions.” These were a combination of focus groups and interviews with consumers and providers of crisis behavioral health care, resulting in 121 listening session participants, 54% of whom identified as consumers.

We asked consumers:

  1. Please describe what it has been like to seek help when you feel you are experiencing a mental health crisis or emergency.
  2. Do you think that the crisis could have been avoided? If so, why or how?
  3. What types of services or types of people ended up being the most helpful in resolving the crisis and helping you gain stability? What is less helpful?
  4. How do you tend to find out about the mental health care that is available to you? If there were new services, what would be the best way for you to learn about them (word of mouth, websites, flyers, mental health clinics, etc.)?
  5. Did those service providers or people recognize any part of your culture that is important to you (your cultural history, traditions, practices, etc.)? If so, what did they do?
  6. What makes access to mental health services difficult, if at all?
  7. What ideas do you have for improvement in your mental health care?

We asked providers:

  1. Based on your experience, summarize the strengths and community assets you’ve observed that support adults who may experience a mental health crisis or help to avoid a crisis.
  2. Based on your experience, summarize major gaps you’ve observed in adult mental health crisis care in your community, including any policies that present a barrier to providing services.
  3. In your community, what factors significantly contribute to a return to a state of crisis for adults who have had a mental health crisis previously?
  4. A previous assessment identified a need to increase the extent to which mental health services are compassionate, culturally responsive, and consumer-focused. From your experience, do you think this has improved? Why or why not?
  5. What would be your top recommendation(s) for improving adult mental health crisis care in your community?

The results of the assessment were rich in detail, inclusive of numerous recommendations, and distributed widely to the entities with the power and influence over behavioral health crisis care as well as those who participated in any of the listening sessions.

 

Considerations, Benefits & Limitations of Methods

The following chart provides additional detail about the considerations, benefits, and limitations of each primary data collection method.  

Considerations Benefits Limitations
Focus Groups
  • A group that already meets might be willing to be a focus group
  • Ensure the focus group will prove diverse perspectives
  • Ensure the time, location and format is most convenient for the participants
  • Eliminate barriers and provide an incentive if possible
  • Ideally there is a facilitator and notetaker to improve efficiency and accuracy
  • Scheduling with one person is usually easier
  • Potential for in-depth perspectives and stories
  • Interviewee doesn’t benefit from ideas shared by others
  • Separate interviews take more time compared to one group meeting
Interviews
  • It is easier to ask follow-up questions during an interview, which could add to the depth of the information shared
  • Schedule the meeting at a time, location and format that is most convenient for the interviewee.
  • Eliminate barriers and provide an incentive if possible
  • Scheduling with one person is usually easier.
  • Potential for in-depth perspectives and stories
  • Interviewee doesn’t benefit from ideas shared by others.
  • Facilitating interviews can take a lot more time than focus groups because each meeting is done separately
  • Interview may ask more questions than in a focus group since there an interview is one-on-one
Observations
  • There are community conditions or settings which warrant seeing firsthand
  • Observations should be planned and organized, anticipating what you are looking for while also being open to what you see
  • Observation provides context of place
  • You can see dynamics that are not understandable by reviewing data
  • Observations have the potential to be intrusive if the observers impact the dynamics of what is being watched
Surveys
  • Design the questions to be understandable and valuable
  • Include qualitative and quantitative questions to increase the value of the insight gained
  • Identify a method of distribution and collection which is efficient, such as email
  • There is the potential to reach more people via surveys than through focus groups or interviews if you have a method of reaching people and if they have an incentive to respond
  • Surveys are challenging to deliver and collect.  Often return rates are much lower than anticipated, limiting the value of the results
  • There is no opportunity to follow up with additional questions so information may be limited
  • Surveys with many qualitative responses may be difficult to summarize
PhotoVoice
  • You should provide an explanation as to the intent or assignment, so the stakeholders have enough guidance for their photos
  • This can be a fun way to collect insight into community conditions
  • Stakeholders will likely enjoy participating in PhotoVoice and be empowered
  • The results are usually visually interesting and can result in visceral responses, which can often be a motivator for support and action
  • If the stakeholders are the ones documenting the photos, they need tools to do so, if they do not have their own cameras
  • PhotoVoice results would likely need to be supplemented with additional primary data since the insights gathered would be limited to the photos received
Stories/vignettes
  • Vignettes or stories should arrive organically and be less planned. They are a potential outcome of an interview, focus group, or observation
  • An effective story/vignette supplements other sources of data and illuminates the condition rather than explaining it
  • Documenting and sharing stories or vignettes can be very effective at sharing the nuance of community conditions
  • Similar to PhotoVoice, a story or vignette can result in visceral responses, which can often be a motivator for support and action
  • The story or vignette should not appear forced or coerced, but rather a more natural explanation of the community condition
  • These can be difficult to collect organically
World Café
  • This method should be considered if you can engage a large group of people
  • There are online tools which can be utilized to facilitate the World Café method virtually if needed. Mural is one example.
  • This allows for the insights of participants to be shared in a fun and creative way by moving the group through a process.  This allows for the dialogue results to be deeper
  • The World Café method takes time to plan and usually requires facilitation materials if done in person.  The results are likely proportional to the effort put into preparation.
  • The method requires space and table set-ups that allow people to move during the process
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Macro Practice for Community and Organizational Change Copyright © by Lynn Amerman Goerdt. All Rights Reserved.