Innovative research partnership: LJ & Allison build new way to measure clinical communication quality

Innovative research partnerships: Healthcare edition is a series of profiles about collaborations between Ph.D. communication researchers and healthcare clinicians, and is a part of the broader Innovative research partnerships series. I consider these partnerships innovative because of the creativity involved in initiating and sustaining cross-sector and multidisciplinary collaborative research. Through separate interviews of both partners in the collaboration, I share the unique stories behind such partnerships and their fruits. 

LJ’s perspective

L.J. Van Scoy, M.D., who is now a physician and associate professor of medicine, humanities, and public health sciences at Penn State Milton S. Hershey Medical Center, was frustrated after a long day in 2014 spent searching medical research databases in vain for what she needed: a way to evaluate the quality of end of life communication. In other words, how can you tell when there has been a “good” or a “bad” conversation when discussing end-of-life preferences? But none of the medical research seemed to provide a valid approach – most of it focused on behaviors rather than her concern: had a rich and substantive conversation occurred? With 5 p.m. looming after a long day, LJ abandoned the fancy search engines and turned to Google. Finally, she found something of interest: Allison’s dissertation about end-of-life communication quality. LJ printed it and took it home, finding herself reading the dissertation in the bath tub that night. “It changed my life,” LJ reflected, adding that Allison’s research was a “goldmine.”

Allison’s perspective

Allison Gordon, Ph.D., who is associate professor of communication at University of Kentucky, received a call from LJ soon afterward without knowing it would lead to four years (and counting) of collaboration. Allison studies how the quality of people’s communication with others affects their health decisions. Partnering with LJ has allowed Allison to study communication between patients and their medical providers and to more fully develop the measure of communication quality. Together, she and LJ have tested, measured, and applied multiple goals theory, which claims that people pursue various goals – often simultaneously – through their communication. These goals include relational, task, and identity goals.

About the project

Together, Allison and LJ have developed and refined the communication quality assessment (CQA), which Allison calls the “gold standard methodology for assessing clinical communication about difficult topics.” Their partnership has yielded at least five academic publications so far, and they have received an R21 grant from National Institute of Health to further develop CQA and compare alternate methods of coding communication interactions in pursuit of a more streamlined process. Given that there are few tools in medical research that are both theoretically-driven and well-attuned to communication quality, LJ believes CQA “belongs in medical culture,” adding that she wants to spread the word among clinicians about this approach to understanding and improving communication with patients.

About the partnership

The partnership between Allison and LJ has worked because they are “united by the common goal of wanting to improve clinical communication,” according to Allison. While partnerships between social scientists and physicians may be rare, Allison and LJ describe the partnership as one marked by trust and mutual respect. Both agree that their complementary areas of expertise are central to the quality of their research accomplishments. Allison acts as social scientific theorizer who provides insight and explanation about human communication, and LJ serves as the clinical expert who provides valuable insight from the clinical side and oversees application of research in context. Their work together has refined CQA by adding two new dimensions to the measure to better account for specific communication in clinical encounters. Further, LJ and Allison’s work styles seem to complement one another’s as well. LJ said that neither of them are “egocentric or arrogant,” adding that Allison had been “generous” in sharing her method and soliciting LJ’s input. Allison admires LJ’s detail-oriented “get things done” approach, adding that she is “happy to be [LJ’s] co-pilot” as LJ pursues grants and new projects.

Disclosure: I have assisted with two of Allison and LJ’s research projects, including one project currently as of October 2018, in which I serve as a paid coder.

Innovative research partnership: Lisa and Roger develop a tool to help patients make complex decisions

Innovative research partnerships: Healthcare edition is a series of profiles about collaborations between Ph.D. communication researchers and healthcare clinicians, and is a part of the broader Innovative research partnerships series. I consider these partnerships innovative because of the creativity involved in initiating and sustaining cross-sector and multidisciplinary collaborative research. Through separate interviews of both partners in the collaboration, I share the unique stories behind such partnerships and their fruits. 

Roger’s perspective

Roger Strair, M.D., Ph.D., who is a chief of blood disorders and medical oncologist at the Cancer Institute of New Jersey, was concerned about the complex decisions his patients face. He wanted to give his patients more tools to make important and complex medical decisions. For example, he described the following hypothetical scenario: a patient faces the choice between two potential therapies. The first is relatively easy to give, and results in 40% of patients being cured. Second, the patient could choose to undergo a bone marrow or stem cell transplant, increasing their chance of being cured to 65%. Yet, a percentage of patients undergoing transplant will have a lifelong disability and some patients who go through the procedure will die sooner.

Lisa’s perspective

Lisa Mikesell, Ph.D., who is assistant professor of communication at Rutgers University, studies patient engagement including the process of complex decision-making. Roger approached her and her colleague, Mark Aakhus Ph.D., several years ago about working together. For this research, Lisa has focused on finding ways to resolve the tensions faced by doctors and patients: patients want optimism (sometimes they don’t want to know their likelihood of mortality) whereas doctors want to provide realistic information to patients without depriving patients of hope. Lisa said patients in this situation often face great uncertainty and decisional conflict. The aim of this research project is to help prevent patients from regretting their medical decision by feeling better prepared to make such a complex, life altering decision.

About the project

The research team conceptualized a multimedia tool that provides these patients who face complex medical decisions with stories of other patients who’ve made similar decisions. To develop and evaluate the tool, they gathered a team including information scientists (Sunyoung Kim, Ph.D., has since joined the team), designers, and an advisory board comprised of patients and clinicians. Their goal is to help patients to make sense of their medical situation by hearing others’ stories and developing their own coherent narrative. Lisa and her colleagues began by collecting pilot data exploring how patients and clinicians report handling the tensions of communicating about complex medical decisions. The team has also developed videos with patient stories that patients can revisit and utilize in different ways over the changing course of their illness trajectory.

About the partnership

Roger said he is generally “untrained” in communication so he appreciates Lisa and her colleagues’ expertise. Roger said they try to have fun while doing this work. He joked that you can’t trust the communications experts because they know how to manipulate words. He said, “you don’t want to play a casual game of cards with a L.A. card dealer, you know what I mean?” Lisa described members of the partnership as “malleable” in that there is openness to working with differing perspectives. Further, people are willing to balance varying priorities and show mutual respect. Roger said, “we don’t agree on everything but we do agree on the fact that there is a great unmet need and it’s a worthy area of study.”

Join me? 2018: Year of Community Research

Academic researchers: You are partnering with community members for your research (or you would like to), but you’ve run into roadblocks and challenges. Sound familiar? Let’s talk. As a 3rd year Ph.D. student, I see that academic communication researchers (and other social scientists) are doing useful and important research in the community that is of great benefit to our society. Yet, beyond some readings on field research in a graduate school methods course, I have seen very few opportunities for conversation and learning about the practice of community research.

For example, maybe you need a forum for working through ethical challenges that arise when working in the field. You are considering drafting a formal written agreement outlining expectations with your community research partner. Or you wonder how to effectively explain the need for IRB to a community partner who is unfamiliar with it? I’ve heard these concerns, among others, discussed by academic researchers who are engaging in research partnerships with community members outside of academia.

For this reason, I have named 2018 the year of community research — a year-long journey of resource-sharing and community-building among community researchers. I believe it is time to celebrate this valuable research and collaborate to improve our efforts. Join me? Sign up to receive updates here.

Resource sharing

Seeking resources

Your thoughts?

  • Submit your questions, challenges, or needs regarding community research practice. These responses will drive my year of community research efforts.

P.S. Wondering what I mean by “community research?” I use this loose term to address a large audience of academic researchers who are reaching beyond the walls of academia to develop responsive research questions, collect data in the field, and/or provide informative results in collaboration with or using input from community members. For example, Lynsey collaborated with a local advocate and key informant to collect and analyze data from a special population, and Jeanette shared evidence with stakeholders by developing a custom training for practitioners. You may call it applied research, community engaged scholarship, community-based participatory research, action research, or something else. To me, your particular methodology is not as important as the drive we share to engage the community with research.

Researchers: Four Lessons Learned About Working With Community Partners

Researchers gathered to share stories and insights about their partnerships conducting research with non-academic community partners at the 103rd annual National Communication Association convention in Dallas, Texas, this past November. Below I have summarized some of the insights they shared during our panel in the form of lessons they have learned along the way.

Panelists included, from left to right: Dr. John Parrish-Sprowl, Dr. Michelle Miller-Day, Tara Watterson (co-chair), Dr. Joann Keyton (co-chair), Dr. Jennifer Ohs, and Dr. Angela Gist-Mackey.

1. Written agreements can help protect you. Every panelist underscored the importance of formalizing the partnership and getting buy-in from decision makers in the organization with which you are partnering, usually via a written agreement. Written agreements can help protect you in case your contact at the organization leaves the position, hopefully preventing you from losing access. John Parrish-Sprowl of Indiana University encouraged researchers not to be bashful about protecting themselves through written agreements. Michelle Miller-Day of Chapman University said securing buy-in from multiple members of the organization has been crucial for the success of her research partnerships. Also, making expectations about data sharing and research outputs explicit can help ensure you are both on the same page since you and your partner are likely to have differing conceptions of research process, protocols, and outputs.

Have a handy resource, for example, a template or sample of an agreement with a community partner that you’ve used? Please join the Year of Community Research to share this resource!

2. IRB poses new challenges. Several panelists shared challenges associated with IRB. A couple of panelists agreed that although IRB and human subjects protection is important, non-academic partners are often befuddled at the need for it or turned off at the demands for signed consent forms, etc. Jennifer Ohs of St. Louis University said she ran into delays when she found she would have to secure IRB approval from both her home institution and her research partner’s healthcare institution, which added months to the timeline.

Joann Keyton of NC State University expressed the need for a short video explaining the importance of human subjects protection for social scientific research purposes that is made for non-academic audiences. Know of a resource like this? Please join the Year of Community Research to share this resource!

3. Ethical concerns arise in the field. Panelists also described instances where they had to make decisions about how to handle situations in the field that they hadn’t faced previously. These situations included differing cultural expectations and diversions by the partner from agreed-upon research protocol. One panelist described pushing back when the partner wanted to change incentives for participants in the middle of the study, at which point the researcher requested not to do so and explained how that would change the research design.

Have ideas for reading material, etc. to help navigate ethical concerns that arise during community research? Please join the Year of Community Research campaign and share this resource!

4. Community research takes more time. Panelists agreed that research in the community is more rewarding, exciting, and challenging. However, panelists also agreed that this type of research takes extra resource commitment, namely, time. It requires researchers to navigate the challenges listed in this post, among others. Partnership involves seeking shared interest, but rarely does every interest overlap. Researchers sometimes make extra commitments in order to accommodate the development needs of the partner organization that didn’t fully align with the theoretical needs of the researcher. Angela Gist-Mackey of University of Kansas shared how she agreed to conduct communication training for a partner organization as part of the agreement for research access.

Have tips for managing the time demands associated with community research? Please join the Year of Community Research and share this resource!