David R. Beukelman March, 2007
There is an increasing emphasis on the evidence base that supports and justifies the provision of clinical and educational services (Evidence Based Practice Conference, Division of Augmentative and Alternative Communication (DAAC), January 2007). A discussion of the reasons behind this trend exceeds the length of this article, but in short, such strategies are designed to reduce the provision of ineffective and inappropriate interventions, encourage provision of intervention services that have proven beneficial, and support the provision of services that are more efficient and effective than other intervention options.
Research that investigates the evidence base of an intervention strategy or procedure usually requires collaboration among researchers and intervention providers. These collaborations are driven by at least two factors. First, most intervention agencies do not employ personnel who are prepared or supported to focus on research. In fact, in many of these agencies, research is not considered an expected personnel activity. Second, university researchers usually do not have access to a sufficient number of participants with the specific characteristics being sought for research, and who are interested in completing intervention research protocols.
Following the ASHA DAAC Evidence Based Practice Conference, a young researcher called me to ask advice about developing and maintaining collaborative relations with intervention agencies. We talked for about 45 minutes about the strategies I have found successful and unsuccessful through the years. The following is a brief review of the topics that we discussed.
Researchers need to view relations with intervention agencies as having several multiple purposes. Most typically, researchers view collaborations primarily as access to research participants or to data. Years ago, a senior administrator at one of my collaborative agencies gave me some powerful advice. She strongly encouraged me not to view her facility as a “data farm”, but to approach our collaboration with sensitivity to multiple purposes and “help make us better”. That advice was given to me 22 years ago, and this morning I am writing to you from a conference room in that site.
Currently, my research effort is primarily supported through collaborations with three separate agencies in addition to my own university. These agencies are very different from each other. My strategy is to contribute in some way to the mission of each of these agencies differ considerably. One agency is a university medical center that has educational, clinical, and a research missions.
A second agency is a large independent rehabilitation center with a primary clinical emphasis, but with an emerging research mission. In both of these centers, I encourage agency personnel to collaborate on my projects, but I also assist with projects that are initiated by their employees. In addition, I interact with their intervention staffs to improve and expand their services by consulting on intervention programs for individual clients/patients and providing short-term loan of AAC technology. At the medical center, I participate in their educational program by presenting lectures on research methods and management of research projects.
The third agency is a transitional living/rehabilitation center for youth and young adults. Their mission involves the development of a therapeutic community with a rehabilitation focus. Although this agency collaborates with one other outside researcher, research is not one of its primary missions. All research in their center must be applied, and unless the research project monitors the performance of residents on intervention programs that the agency staff have chosen, they do not allow their staff to participate in research projects during working hours. Rather, they prefer that I or one of my staff come to their center to collect data during times when their programs are not operating. So, in that facility, we collect much of our data on the weekends or the evenings. In order to contribute to this agency, I consult regarding individual interventions, provide AAC equipment on short-term loan, and provide some staff consultation and training.
I offer personnel from all of my collaborating agencies opportunities to participate in and impact pre-professional preparation at the university. I review clinical course content with them, so that they can inform me about the strengths and weakness of our student externs who are assigned to their facilities. I invite my clinical collaborators to provide case presentations and expert level presentation in our classes. Finally, I recommend students with strong skills and interests for directed research experiences and externships for participation in their agencies.
Each of the collaborating agencies involved in this research program has a primary commitment to deliver intervention services. The collaborative research program must be managed such that it does not interfere with that commitment. The most obvious (and commonly reported) example of violating this principle would be research activities that remove staff or clients from intervention services or instruction. Another particularly difficult situation occurs when the research design requires different interventions or educational services than those currently offered by the agency. Care must be taken not to confuse participants or their family members about the reasons for offering a different intervention or instructional program than those received by other individuals who are served by the agency. Care must also be taken not to denigrate agency staff or services in the process of attempting to recruit research participants “with a superior intervention involving a superior staff”.
Most agencies have adopted a series of values that guide them. Successful research collaborators must recognize the need to identify, accept, and work within the framework of these values. For example, one of my collaboration agencies is a faith-based organization that provides chapel services at scheduled times. They have a policy that clients and their family members can attend these services, if they choose, and that intervention services and research cannot interfere with their choice.
Another agency organizes itself as a therapeutic community. As such, it involves staff and residents in social activities that are designed to build community, develop friendships, involve families, and so on. This agency does not wish for me to hire their staff to collect data during working hours, as it may remove them from community activities; however, they support and welcome me and my research assistants to collect data at times that do not interfere with rehabilitation or community activities.
Understanding the complexities of human subject protection is essential for successful collaborations. Many potential collaborating agencies have established their own policies regarding research in their facilities. Two of the three agencies with whom I collaborate adhere to a “first university” human protection (IRB) policy. That is, we use my university’s human protection documents and guidelines to obtain human protection approval in their IRB review procedures. Therefore, we do not need to prepare a second set of documents to obtain agency approval. We are expected to complete two additional forms not required by my university. One form deals with medical confidentiality issues (i.e., HIPAA) and a second document outlines the impact of a project on agency staff and clients. In this way, agency personnel are aware in advance of the demands that a project will place on the agency and the extent to which it will impact its commitments. These agencies have internal research review committees that provide site approval for each research project. This approval is required for my research activities as well as for those initiated by agency personnel.
The third agency has its own human participant protection system and does not allow my university to serve as the “first” university with regard to IRB procedures. So, we need to file separate IRB applications and then try to negotiate changes required by one agency with the other agency. Each agency pretends that it is the “first” organization. It is a completely frustrating experience, and I have tried unsuccessfully to have it changed each time a new administrator becomes responsible for the human protection process. But, it appears to have become a “power thing”. Unfortunately, it is the price of “doing business” with this agency. I could write a chapter focusing on the human protection process alone, but I realize that the issues differ from campus to campus and agency to agency. It is best to find personnel within your human protection program and the programs of each of your collaborating agencies who have a reputation as facilitators. Consult with them. Learn from them. Let them guide you. And try to be patient—look whose talking!!
Whenever possible, I reimburse my collaborators and/or site managers for the time that they spend on my projects. In this way, the agency realizes that I am making a good faith effort to defray any of their costs associated with my projects. At times, we need to complete “preliminary work” to justify a research proposal. In these cases, agency personnel participate without financial support, for a time, with the anticipation that when funding is obtained, they will participate financially in the project. At times, I have been able to convince the research office at my university to provide some preliminary financial support for an agency during this time of preliminary work.
Whenever possible, I attempt to identify and engage research partner(s) and site managers within the collaborating agency. Such individuals are much more sensitive to the culture of the agency than I can be. In addition, they will have ongoing relationships with staff and administrators that often facilitate the research effort. Finally, they can serve as an “early warning” system when problems occur among the agency administration, clinical personnel, and the research effort.
Usually, two layers of partnership work best—one within the administrative ranks and one within the clinical ranks. However, at times, a clinical staff person has such strong relationships with administration, that I do not need to develop the administrative relationship independently.
Again and again through the years, personnel of clinical agencies have indicated that they prefer not to collaborate with researchers, because we just add to their workload, cause them grief, and then take all of the credit. Often, they indicate they are lucky if they are mentioned in the acknowledgements of an article. At times, if they were acknowledged, they were not informed and remain unaware even of this. Human beings are extremely sensitive to credit, and many potentially productive collaborations are destroyed because of the failure to prevent or resolve credit issues.
In order to develop and maintain a working relationship, I try to discover the needs of collaborators and collaborating agencies. The differing requirements of collaborators and collaborating agencies should not be underestimated. I share credit with my collaborators in a variety of ways. First, I include them as presenters on conference presentations that I submit, and I assist them in submitting presentation proposals to conferences of their choice. If they present at conferences with me, I make sure that photos are taken of the presentation team and provide these to the agency. I also attempt to arrange for a “celebration” at the conference to signal my appreciation for their efforts on a project. Frankly, the celebration is often just a lunch or a cup of coffee. For one collaborator, a staff statistician, indicated that she did not wish to be included as an author, as long as she was paid for her work. Later, she was appointed to a faculty position and her focus took a turn - completely away from monetary reimbursement and fully toward publication and/or presentation credit. Some agency administrators may desire credit during media announcements of their role in research.
I also include my collaborators as co-authors on research articles and reports, when appropriate. Typically, I work to develop a policy with agency personnel to determine what the guidelines for authorship will be as early in the project as possible. Generally, these guidelines contain language that describes activities that are viewed as “a critical role” in the research effort. Usually, this means that a collaborator is involved in planning the research project, collecting a substantial amount of data, recruiting and certifying participants, or having some unique role in data measurement or analysis. I try to involve each co-author in some way in the writing process, and the final manuscript must be reviewed and approved by all authors.
The publicity department of my university often highlights research programs or researchers in its publications. When my research is highlighted, I insist that the names of my collaborating agencies and collaborating personnel be included in these articles. In fact, in most cases, I require that I review a draft to the article to make certain that this information is included.
Student involvement in a collaborative agency can be the problematic aspect of research/clinical collaborations. Both doctoral, masters, and undergraduate degree students often participate in our research collaborations. To do so, they need to adhere to the collaboration guidelines outlined above as well as the IRB procedures. At times, the self-interest or the inexperience of students tempts them to violate these guidelines. Researchers must to be sensitive to these tendencies. Some possibilities are: (1) a student exceeding the research protocol in an effort to collect data for a class project or to collect preliminary data for a thesis or dissertation, (2) students attempting to recruit potential participants for a personal research project in a way that was inconsistent with the IRB recruitment guidelines, or (3) students treating agency staff as their assistants rather than as research collaborators.
Through the years, I have observed considerable frustration among agency personnel when university researchers send their students to a site, but did not maintain a regular personal presence themselves. Intervention personnel have little patience with a student whose time schedule is driven by the university schedules of semesters and vacations, course syllabi, or by their own procrastination, rather than by the research itself or the other commitments of the intervention staff. Of course, students can become equally frustrated when the clinical staff does not respond to the needs of the research project. Unless one is proactive, it becomes easy for clinical sites to conclude that student involvement in collaborative research is just too “messy”.
I have been writing these comments in a conference room at one of my collaborating agencies while waiting for a team meeting. One of the support staff members stopped by and asked if I would be interested in joining a group for lunch, as they say “goodbye” to a temporary staff person who has covered for someone on leave. I agreed and thereby committed myself to a lunch engagement that was not on my schedule. I guess that is another collaborative strategy, to recognize support staff, to signal my appreciation for their efforts, and to connect with them on a personal level. On a regular basis, I make it a point to spend a moment or two with those who answer phones, schedule rooms, maintain the electronic infrastructure, and keep the place clean. On occasion I also distribute coffee-shop gift cards, to those who have been particularly supportive of our research efforts or who have prevented problems. At one of our sites, the janitorial staff is leaving about the time I arrive. I try to spend a moment or two checking in with them to determine if “anyone has been messing with my stuff”. They seem to get a kick out of these interactions and, I hope, that I am communicating to them that they are important to the research effort and encouraging them to be careful with and monitor the safety of the research equipment.
Inter-agency collaboration is essential to some research efforts. Hopefully, some of what I have written will be useful for consideration in establishing and maintaining your collaborative relationships. I realize that my illustrations often have described problems. I have done this to help identify barriers that might limit collaborative opportunities. Often, through the years I have provided researchers with collaborative guidelines, only to watch them violate the most basic ones, such as expecting staff participation that is not reimbursed, not sharing credit, stretching research protocols to include activities that have not be approved, not supervising students adequately, or not treating agency personnel with respect. These collaborative relationships are essential but require time, energy, and strategy to develop and maintain.