This brief focuses on a sub-set of NCH projects that are engaging youth to promote community health. The report describes how clinics can integrate youth into community health improvement efforts and profiles three projects to illustrate different of ways to engage youth. The brief also includes lessons learned from the projects, which may be of interest to others who support, design or implement similar projects.

The topic of human rights protection often evokes images of poor and disadvantaged individuals and the activities conducted and laws passed to ensure that they are not mistreated. A less common image is that of evaluators collecting data from and about these very same individuals, yet this is also a real piece in the human rights protection puzzle.

Evaluations of grantmaking strategies and programs document the experiences of grantees and program constituents through surveys, interviews, focus groups and observations. As such, it is important to protect the information communicated through these interactions. But whose job is it to ensure the rights of study participants?

It is the responsibility of both the evaluator and the grantmaker.

Evaluators are accountable to their clients, their clients’ grantees and program constituents involved in their studies. As evaluators, we are required to take action to ensure that personal information and opinions are protected (sometimes under lock and key) and that sensitive data (like health status and contact information) is kept confidential. Foundation staff are also responsible for the rights of participants in the studies that they fund. This may seem obvious; however, the established standards for protection are not always clear.

BTW has created resource documents and a training toolkit to help foundation staff understand how study participants should be protected and how philanthropic organizations can navigate these issues. These materials are written specifically for foundation staff responsible for commissioning evaluation and research studies. They are intended to share the appropriate amount of information and detail without overwhelming funders and to serve as a reference when questions arise about the protection of study participants.

We hope you find these materials useful to you and your colleagues at foundations!

Materials

Ensuring the Rights of Study Participants: Resource Documents for Philanthropic Organizations

Ensuring the Rights of Study Participants: Training Toolkit for Philanthropic Organizations

Ensuring the Rights of Study Participants: PowerPoint Presentation

Ensuring the Rights of Study Participants: Resource Documents and Training Toolkit for Philanthropic Organizations by BTW informing change is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License. Permissions beyond the scope of this license may be available at http://btw.informingchange.com/about/contact-us.

In the past few days, we have been drawn to the somber news of Steve Jobs’ passing. We listen to the story of his life, finding inspiration from its twists and turns. Jobs’ 2005 Stanford commencement address, in particular, caught my attention, with its straight-forward references to the certainty of death and how to gain inspiration from death’s imminence.

“If today were the last day of my life, would I want to do what I am about to do today?” Jobs posed. This question is not just about personal gratification; it is about life purpose. What am I going to do today, tomorrow and the next day that has lasting significance? Jobs places his question in the context of the certainty that we all come and go in this world. Death is not to be feared but rather embraced as a source of motivation and in recognition that we can make important contributions that will endure beyond any one of us.

Similarly, I was also moved by the passing of Betty Ford earlier this year. In my office I have a photograph of Ford posing barefoot on the Cabinet Room table on Gerald Ford’s last day in office. It is a vision of power, grace and service—a pose of offering.

Like Jobs, Ford’s life was full of significant twists and turns. “I was an ordinary woman who was called on stage at an extraordinary time,” she has been quoted as saying. Ford took her own personal adversity and turned it outward, leaving her legacy in the Betty Ford Center as a place of comfort and healing for others. She built upon her own shortcomings for the greater good.

What do the powerful life stories of Steve Jobs and Betty Ford have to say to those of us working in and around the nonprofit sector? Whether we are toiling at a nonprofit to feed the hungry or nurture children in need, striving to be effective stewards of philanthropic resources, or supporting the efficiency and effectiveness of the sector, we can draw inspiration from their examples. They compel us to tackle uncharted territory while maintaining the humility of seeing individual efforts as part of the larger whole.

Purpose propels us forward; humility keeps us real.

Technology is one of my favorite things. I love to “geek-out” and have conversations about how to use new technology in evaluation projects, such as new updates to online survey software and social media tracking strategies for community organizing projects. My technology toolbox is well stocked and constantly growing. Often I am tempted to use these tools simply because I can. However, as I was reminded today, this is not always a good idea.

I joined my team this morning to brainstorm ways to collect data from college students. In our attempt to make it easy for the students, we planned to use four different tech tools to track data: two online surveys, a text message survey and Facebook event tracking. My mind began to spin and I started to panic!

How are we going to keep track of all these data? What if students respond more than once? What if two students report different attendance numbers for the same event?

Thankfully, after much discussion, we streamlined our methods and limited ourselves to a fraction of our original plan (two online surveys). In hindsight, my panic resulted in an important learning: don’t use technology just because it’s available. Having the right tools is important, but knowing when to use them is the key to success. Here are some thoughts I now keep in mind when determining which tech tools to use.

1. Know your audience. What tools do your constituents use? Does your audience text or use Facebook? Do they have access to new tech tools? How can you meet them where they already are? Does your audience need incentives to respond?
2. Do your research. What are the strengths and limitations of each tool? Are the tools easy to use or are there steep learning curves? TechSoup has a wealth of resources about different types of tech tools that I have found helpful when answering these questions, such as the pros and cons of various online survey software systems.
3. Make informed decisions. What types of data will different tech tools produce? Does the type and quality of the data vary? Is it necessary to use more than one tool? Since using too multiple tech tools can create analysis complications down the line, proactively think about the specific data you expect to collect from each tool.

On a positive note, these guidelines have helped my team choose the most appropriate tech tools and ensure that we collected accurate data. On the other hand, it does mean that the really cool text message survey will just have to wait until my next project…

What does it really mean to treat participants in evaluation studies fairly, equitably and with the utmost respect? For those without a deep research background who commission evaluations, it is vital to understand whether evaluators are taking appropriate steps to protect the human subjects in their work. Does every study require an Institutional Review Board (IRB) process? When is this not necessary? Where do you begin if an IRB process is warranted? At this year’s American Evaluation Association 2011 Annual Conference, BTW Principal Ellen Irie will hold a demonstration session on a toolkit to address these issues. Relevant for those responsible for evaluation and research studies, this go-to resource provides easy-to-follow decision trees, guidelines and descriptive resources for spotting potential areas to consider and then determining next steps to ensure ethically sound evaluations.

November 3, 2011

4:30–6:00 p.m.

American Evaluation Association Annual Conference

Hilton Anaheim, Oceanside

Anaheim, CA

Registration is now open for members and non-members.

BTW’s Director of Evaluation & Organizational Learning Kim Ammann Howard, Claire Reinelt from the Leadership Learning Community and Melanie Moore from See Change have been selected to present at the annual conference of the American Evaluation Association. They will present the promising practices and unique challenges of three different network evaluations during their session “Evaluating Networks: The Evolving Practices, Their Promises and Perils.” This will include a discussion of the pros and cons of different data collection and analysis methods, value creation strategies for network learning processes, and the role of sponsors, facilitators and evaluators in these processes. Kim will focus on The California Endowment and Tides four-year, $10 million effort to build on community clinics’ strengths and encourage them to form multi-sector networks to more effectively promote community health. In her presentation, Kim will describe her experience evaluating the variety of approaches undertaken by the program’s 26 grantees to address a wide range of community health issues throughout California, and the resulting impacts.

November 5, 2011

2:20–3:50 p.m.

American Evaluation Association Annual Conference

Hilton Anaheim, Pacific D

Anaheim, CA

Registration is now open for members and non-members.