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Empowering communication: a community-based intervention for patients
Patient Education and Counseling 52 (2004) 113–121
Empowering communication: a community-based intervention for patients Anh N. Trana,*, Paul Haidetb,c, Richard L. Street Jr.d, Kimberly J. O’Malleyb,c, Frank Martinb,c, Carol M. Ashtonb,c a
Department of Health Behavior and Health Education, School of Public Health, University of North Carolina at Chapel Hill, CB #7440, Chapel Hill, NC 27599-7440, USA b Houston Center for Quality of Care and Utilization Studies, US Department of Veterans Affairs Health Services Research Center of Excellence at the Houston VA Medical Center, 2002 Holcombe Boulevard, VAMC (152), Houston, TX 77030, USA c Department of Medicine, Baylor College of Medicine, Houston, TX, USA d Department of Communication, Texas A&M University, 4234 TAMU, College Station, TX 77843-4234, USA Received 28 May 2002; received in revised form 3 December 2002; accepted 9 December 2002
Abstract The ‘‘How to Talk to Your Doctor’’ community education forums operate under the assumption that information exchange and consumer involvement in healthcare can empower communities in need. We report on the development and preliminary evaluation of this communitybased intervention designed to activate and enhance patients’ communicative abilities in the medical encounter. We review evidence supporting the feasibility of and benefits that can be expected from improving patients’ communication competency. Our intervention is simple and flexible so, therefore, can be portable to a large number of communities. Our preliminary evaluation suggests that the intervention is well-received and produces improved self-perceptions of communication competence across diverse settings and participants. We describe our intervention and its development and dissemination as a model for improving patients’ communicative abilities through a communitybased, active learner approach. By sharing our experiences, the barriers we encountered, and our ongoing efforts to improve patient communication in the medical encounter, we hope to empower patients to communicate better with their physicians. # 2003 Elsevier Science Ireland Ltd. All rights reserved. Keywords: Physician–patient relations; Persuasive communication; Patient-centered care patient activation; Cross-cultural comparison; Community networks
1. Introduction Patient–physician communication is a critical element of high quality healthcare: it influences patients’ ability to recall physicians’ recommendations [1], achieve satisfaction [1–6], adhere to treatment regimens [1–3,5], and even achieve favorable biomedical health outcomes [7,8]. Poor communication between physicians and patients interferes with patients’ ability to understand their options, cope with anxiety caused by illness, and make informed decisions about the next diagnostic and therapeutic steps to take for their sickness [2,8–13]. Unfortunately, patients and physicians often experience problems communicating with one another. Patients’ frequent complaints about poor communication with physicians, hospital workers, and health care professionals, in the * Corresponding author. Tel.: þ1-919-451-1129. E-mail address: [email protected] (A.N. Tran).
private as well as public sector, are universal findings on patient satisfaction surveys [14–16]. Physicians also experience frustration with patients who have difficulty discussing their symptoms, expressing their concerns, and understanding recommendations [17]. Traditionally, interventions designed to improve communication in the medical encounter have focused on the physician [18]. Evidence shows, however, that the patient’s communicative behavior exerts a strong influence on the physician’s responses [1,5]. While it is difficult to teach physicians new styles of interpersonal communication, research also shows that brief and simple interventions can effectively teach patients to communicate better with their physicians [9,10,19–21]. In an effort to improve patient–physician interactions from the patient’s position, health services researchers and educators at the Houston Center for Quality of Care and Utilization Studies have launched an innovative, community-wide public service health education program,
0738-3991/$ – see front matter # 2003 Elsevier Science Ireland Ltd. All rights reserved. doi:10.1016/S0738-3991(03)00002-8
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‘‘How to Talk to Your Doctor.’’ This community-based education program is based on techniques proven to effectively teach patients how to influence the way they and their physicians communicate. Our program aims to teach patients to get information about their health more effectively and to participate more actively in decisions about their care, thereby fostering care that more accurately reflects their personal values and preferences. The program agenda is designed to help participants recognize barriers to good patient–physician communication, learn good patient communication techniques, and practice these new skills.
2. Rationale and development of community education forums
communities, particularly communities with poorer and minority residents. For example, patients who participated in previous research received communication skills training typically after they had already scheduled an appointment at a particular clinic or while they were waiting for their consultation [8,9,11]. In both cases, the training was provided only to those patients who decided to seek care and who were already at a clinic where the program was offered. Individuals who are reluctant to seek medical care or whose health care providers do not offer patient communication resources would receive no benefit at all in such a paradigm. Moreover, people who are reluctant to seek health care may not do so because of a general mistrust with health care institutions or apprehension about medical care, a problem possibly related to communication issues and one that is often true for poorer and minority populations [43–45].
2.1. Rationale 2.2. Development The ‘‘How to Talk to Your Doctor’’ community education forum is based on three premises: (1) patients who are active communicators achieve better health outcomes; (2) interventions aimed at improving patient communication can be less time- and resource-intensive than those aimed at improving physician communication; and (3) there is a need to reach patients in diverse communities. We briefly discuss these three premises as follows. First, patients who are active communicators often receive better health care and experience better outcomes than do patients who are passive communicators. A growing body of evidence indicates that patients who ask questions, express their concerns, discuss their health experiences, and state their preferences for care receive more information, support, and reassurance from physicians [9,22–25]. Physicians in such situations often have a better understanding of the patient’s health needs, requirements, and expectations [18,26]. Patients who actively participate typically acquire a better understanding of their health issues [27,28], are more committed to treatment plans [10,29], gain a sense of control over medical decisions [30], and achieve more effective disease management [7,11]. Secondly, patient activation interventions are generally simpler and more easily implemented than interventions aimed at changing physician behavior. Physicians typically have communicative styles that require large amounts of time and effort to change [5,24,31–34]. Unlike physicians, patients usually do not need to learn an extensive new repertoire of new communicative behaviors, but, rather, require a timely intervention to legitimize and encourage their participation and suggest strategies (e.g. writing questions and concerns before the visit, rehearsing) to facilitate more active communication in the encounter [9,21,34–42]. Finally, there is a need to reach many diverse patients at the community level. In spite of proven effectiveness at the level of individual patients, activation interventions have traditionally demonstrated limited scope and impact within
We developed the ‘‘How to Talk to Your Doctor’’ forum as a community education intervention rather than as a clinical intervention in an effort to reach a broad spectrum of people who might not otherwise have access to communications skills education. We used two strategies to disseminate the program within different communities. First, the program was designed to provide workshops and materials to various groups of people who routinely need medical care (e.g. breast cancer survivors, elderly groups) but may not routinely seek it. Second, the program was designed to be easily adapted to a ‘‘train the trainer’’ format for health professionals (e.g. social workers, case managers, nurses). Such health professionals, in turn, could disseminate the intervention to their clients. We began the development process by consulting existing resources on patient communication education in the public domain. Our sources included the National Institute on Aging website [46], the Bayer Institute for Healthcare Communication [47], and the American Medical Association Medical Library website [48]. Instructional content for the program was derived from these and from our review of descriptive research about features of participatory patient communication [42]. In an effort to model active participation, we designed activities that encourage participants to openly discuss issues and share experiences, such as small breakout groups, informal discussions, ‘trigger’ video tapes, and role-play. Research on symbolic modeling and cognitive rehearsal suggest the value of such approaches [49,50]. To reinforce program content, we designed a set of professionally printed materials; these are collated into an easy-to-read guidebook that we have translated into English and Spanish. The main development costs of conducting the ‘How to Talk to Your Doctor’ community forum consisted of printing costs for the guidebook. All of the educators for our program were volunteers, and all attended a 2-h training session prior to conducting their first forum. The community sites where
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The ‘‘How to Talk to Your Doctor’’ community educational forum is a 2-h program intended for small groups (n ¼ 20–40), especially those that can benefit from improved patient–physician communication, such as elderly or low-English proficiency groups. The main goal of the community education forum is to promote active patient communication in an effort to improve health. Two co-educators, a physician and a non-physician, present each forum. We use this combination so that both voices in the patient–physician relationship are represented and can share their unique perspectives in a collaborative manner. This format also allows the educators to directly address any concerns participants may have that are specifically related to a physician role or a patient role. Though the implementation of this program is not dependent upon having both types of facilitators present, we feel that it enhances the dialogue that takes place by allowing both perspectives to enter the conversation about issues of interest raised by participants.
During the forum, each participant receives a ‘‘How to Talk to Your Doctor’’ guidebook. This 20-page guidebook is organized along the four main discussion topics and includes checklists and areas for participants to record their thoughts. The guidebook content and materials are available in English and Spanish, and the graphic cover art for the Spanish language booklets features a Hispanic family as the dominant photo-image. We received guidance in developing the booklet from sources that included physician-researchers at the Houston Center for Quality of Care and Utilization Studies, a pilot test group from a local clinic, and an advisory board consisting of diverse community leaders in the Houston area who demonstrated interest and/or expertise in the area of minority health issues and health disparities research. We conducted readability tests on the guidebook to ensure that materials were produced with a 7th–8th grade reading level. Aside from the booklet, additional educational materials used during the forum include videotapes with examples of patient–physician interactions, flip charts, and role-play scripts. During a typical forum, we generate the content of the first two discussion topics (recognizing barriers to communication and examples of helpful communication styles) by asking participants to respond to ‘trigger’ videotapes and provocative questions about patient–physician interactions. For the third discussion topic, we introduce three ‘tips’ for improving patient–physician communication that include: (A) Asking questions to receive information; (B) Being prepared for visit; and (C) expressing one’s Concerns. We use the ‘ABC’ mnemonic as a memory aid for these tips and include a punch-out wallet-sized card on the back cover of the guidebook. The card additionally lists reminders for patients on how to use the ‘tips’ for improving patient– physician communication.
3.2. Content of community education forum
3.3. Timeline of community education forum
The forum is divided into four main discussion topics: (1) recognizing barriers to good patient–physician communication, (2) recognizing examples of helpful patient–physician communication styles, (3) understanding how to apply ‘‘tips’’ to improve patient–physician communication, and (4) practicing tips to improve patient–physician communication. The learning objectives are listed in Table 1.
At the beginning of a forum, the facilitators provide participants with a guidebook and ask them to complete a consent form and pre-intervention survey. Both facilitators and participants introduce themselves to the group and share their thoughts about why the topic of patient–physician communication is of interest to them. Facilitators then review the program goals, learning objectives, and session timeline. Next, the facilitators transition to the first main discussion topic: recognizing barriers to good patient–physician communication, ask participants to list communication barriers that they face with their own physicians, and record the responses on a large flip chart. To encourage group discussion, facilitators may use a video that features scenes of patient– physician communication and ask participants to point out communication barriers they detect from the video vignettes. The second discussion topic centers on participant recognition of examples of good patient–physician communication styles. The guidebook contains a checklist of good physician and patient communication traits. Facilitators
we have conducted our forums all donated space for the forums. We usually provided light snacks, drinks, and a drawing for a few small gifts at the forums. The cost for snacks and gifts usually ranged approximately US$ 100 per forum, depending on the number of participants. In terms of the guidebooks, we utilized local university media printing services to help design and produce the guidebooks. A reprint of 1000 guidebooks cost approximately US$ 3–4 per copy.
3. Conducting and disseminating the community education forums 3.1. Logistics of ‘‘How to Talk to Your Doctor’’ community education forum
Table 1 Learning objectives of ‘‘How to Talk to Your Doctor’’ community education forums No.
Learning objectives
1 2 3
Recognize barriers to good patient–physician communication Describe reasons for good patient–physician communication Recognize examples of good physician and patient communication traits Apply ‘‘tips’’ for improving patient–physician communication Demonstrate good patient–physician communication techniques Recall good patient–physician communication strategies
4 5 6
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discuss the issues of understanding both patient and physician roles, acknowledging how physicians and patients can have different communication styles, recognizing what factors might affect their styles, and identifying good physician and patient communication traits. The third discussion topic centers on the application of ‘‘tips’’ for improving patient–physician communication. Facilitators discuss communication techniques that have been shown to improve the quality of patient participation in medical interactions. Facilitators divide the audience into small groups, assign them to complete an exercise in the booklet and report back to the full group. The exercise contains common communication barriers faced in the medical interaction, and participants are asked to select possible techniques to overcome those barriers and then plan out the dialogues that they would have with their physicians to do so. If time allows, facilitators can show participants video clips featuring scenes of patient–physician communication in order to identify examples of good communication techniques. The final activity in the community education forum is practicing techniques for good patient–physician communication. Here, facilitators introduce the scripts contained in the booklet, role-play the scripts with each other, and ask the audience to give their critique of the interaction. There is also an option to role-play in small groups or choose volunteers to role-play. Facilitators conclude the community education forum with a review of the main points. In the booklet, there is a place for participants to contemplate about their next physician visit, write down any problem they expect to face, and plan a strategy to address it. Facilitators remind participants to carry the wallet-sized reminder card with them and use it as a tool to remind them of good communication techniques. Finally, facilitators ask participants to complete the post-forum surveys. The timeline description above is intended to give readers a basic impression of the activities that occur within the forum. For more specific details about the forum curriculum or the guidebook content, readers are encouraged to contact the primary author. 3.4. Disseminating and organizing the community education forums To disseminate the ‘‘How to Talk to Your Doctor’’ forum, we recruited interested groups through outreach contacts, referrals from our community advisory board, and contacts that we made during academic or community presentations about racial disparities research being conducted at our center. Our specific recruitment methods varied with respect to the organization we focused upon. In general, our staff contacted prospective audiences using a list of communitybased organizations or organizations serving public health needs in the surrounding area. During the initial contact, our staff identified the person designated with the responsibility
of scheduling events. Our staff member described the nature of the community education program and provided interested organizations with an information packet that consisted of a curriculum guidebook, a published article about the ‘‘How to Talk to Your Doctor’’ program, and a local newspaper article highlighting our center’s research efforts regarding patient–physician communication. We asked organizations who agree to be host sites to provide a site liaison (e.g. community health nurse, program coordinator) to facilitate success of the forums. The liaison can be anyone with the organization and oftentimes is the coordinator or leader of the organization. This individual assists with reserving space, developing marketing strategies, and estimating the number of people that will attend the forum. The liaison also provides information on potential forum participants. We provide the liaison with a screening template to provide a general profile of the expected audience.
4. Evaluation to date In our initial efforts to evaluate the extent to which our education program goals were met, we collected basic program data using pre- and post-intervention surveys. Within the pre-intervention survey, participants reported demographic information, such as gender, age, education, ethnicity, employment, and income as well as their confidence in communication skills when talking to healthcare providers. Participants also completed a post-intervention survey, which included the confidence in communication skills assessment, questions about the length and specificity of the forum, and questions related to the quality of the materials and presentation. The post-forum participant survey also contained two open-ended questions (‘‘What did you like BEST about the presentation?’’ and ‘‘What did you like LEAST about the presentation?’’). In addition to the participant survey, we conducted a post-hoc, open-ended survey of forum educators. On this survey, we asked educators to respond to the following question: ‘‘Please write a brief paragraph describing an experience that stands out in your memory while you facilitated the How to Talk to Your Doctor community education forum.’’ We calculated descriptive statistics for participant demographics (gender, age, ethnicity, education, employment, and general health). Throughout the period of June 2001 to February 2002, a total of 110 participants consented to take part in the community education forums. Participants were 73% female, had an average age of 53 (19.1) years and ranged in age from 20 to 91 years. Their self-reported ethnicity was 52% African American, 24% White, 20% Hispanic, <1% Asian Indian, <1% Vietnamese, and 3% other. Sixty-one percent of the participants reported that they attended some college, 55% reported working full-time, and 35% reported their general health as Very Good or Excellent. The number of participants at each site ranged
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Table 2 Patient Confidence in Communication Scale (PCCS) No.
Item
1 2 3 4 5 6
I I I I I I
can easily list problems or barriers that get in the way of good patient-doctor communication can easily list the reasons why I need to communicate effectively with my doctor can easily give examples of what my role, as a patient, should be when I talk to my doctor can easily list goals I want to achieve when talking to my doctor can easily give examples of what a good doctor’s role should be when he/she interacts with me know ways to improve my communication with my doctor
Note: Response categories for all items were (1) Strongly Disagree, (2) Disagree, (3) Slightly Disagree, (4) Slightly Agree, (5) Agree, and (6) Strongly Agree. Subscale totals were calculated by summing all items and rescaling totals to a 0–100 scale.
from 4 to 30. A total of 11 educators participated in the community education forums. All of the educators were researchers or research assistants, and all were involved in conducting patient–physician communication research. Of the educators, eight were female and five were physicians. We hosted the forum at seven different community sites. These sites represented a number of unique populations, including a community mammography clinic (healthcare provider audience), a senior community center (predominantly African American senior citizen audience), an employee health education program (employee audience), a county healthcare clinic (breast cancer support group audience), a multi-cultural social service agency (social worker audience who work with immigrant and Englishlimited proficiency community), a community mammography clinic (Spanish-speaking breast cancer support group audience), and a church-based senior citizen nutrition program (predominantly African American audience). Participants’ confidence in their ability to effectively communicate with their physician was assessed using a six-item measure developed as part of our program. The Patient Confidence in Communication Scale (PCCS), presented in Table 2, asks participants to report their ability to list goals, barriers, and necessary skills for effective communication with their physician. The PCCS is a Likert-type scale with six response categories that range from ‘‘Strongly Disagree’’ to ‘‘Strongly Agree.’’ Scores on the PCCS are computed by summing responses to the six items and rescaling total scores to range from 0 to 100, with higher scores indicating more patient communication confidence. Since we developed the PCCS for our forums, we examined the factor structure and internal consistency of the items. Exploratory factor analyses provided evidence that one factor formed the basis for the seven PCCS items. The single factor accounted for 53 and 59% of the item variance at pre- and post-intervention, respectively, and communalities ranged from 0.28 to 0.66 at pre- and post-intervention. Internal consistency estimates at pre- and post-intervention were 0.81 and 0.86, respectively. Findings from the repeated measures ANOVA (Fig. 1) revealed that the group by time interaction was not statistically significant (Fð6; 63Þ ¼ 2:0, P ¼ 0:09) indicating that the mean pre–post-intervention improvement was not
statistically different for the participants at the seven centers. The test of the main effect of time was statistically significant (Fð1; 63Þ ¼ 35:1, P < 0:001). Specifically, mean PCCS scores averaged over all participants increased 10.1 points (13.7) from 73.2 to 83.3. The effect size of this increase was moderate, as indicated by the associated partial eta squared of 0.36. The partial eta squared indicates the proportion of total variability in PCCS scores attributable to the time factor. In addition, findings also indicated a significant main effect of group (Fð6; 63Þ ¼ 3:2, P ¼ 0:008, eta squared of 0.23), indicating that the average score on the PCCS over the two occasions differed for the participants at the seven centers and the effect of the group factor was low to moderate. The highest scoring group, for example, had a mean PCCS score averaged over the two assessment occasions that was 15.9 points higher than the lowest scoring group. Overall, these findings indicate that though the participants at the centers reported different levels of confidence in communication at both pre- and post-intervention and the level of confidence increased from before to after the intervention, the increased amount was not statistically different for participants at the different centers. Our analysis of participants’ and facilitators’ responses to the open-ended questions was guided by the question: ‘‘What meaning and impact did the community education forums have for participants and trainers?’’ All authors individually read the written comments from the participants and the educators. We then engaged in a series of three iterations of group discussion, notation of written comments, and individual re-reading of written comments in order to identify common and stable themes. We presented our results back to the educators to comment on the plausibility of our conclusions. Forum participants provided many comments about what they enjoyed the most and least about the education forums. Some common themes included the following: (1) participants enjoyed interactive learning that involved class participation/role-play; (2) participants felt they could actually leave the training knowing specific tips for physician’s visits; (3) the training helped address existing communication barriers; and (4) trainers showed genuine concern for participants. Many participants expressed feeling increased
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Fig. 1. Mean Patient Confidence in Communication Scale (PCCS) values at pre- and post-intervention occasions for the seven centers.
confidence in their own communication abilities because they had learned tangible skills to use in the future. Some participants requested more information from the trainers at the end of the sessions, and many of the communities have expressed interest in scheduling repeat and follow-up sessions. Regarding the educators, their reflective narratives corroborated the participants’ comments: What stands out most about the experience was the way we were able to engage the group as our presentation progressed. The seniors seemed to truly value the information that they received. During this workshop, participants openly expressed their experiences with doctor patient communication and what they perceived to be barriers. It was quite clear early on that many people had wanted to participate in a workshop about ‘How to Talk to Your Doctor’ but had never had the opportunity. In addition to the high value of the community education forums noted by the participants and educators, a second theme that emerged on our review of educator responses centered around the issue of strategies to improve communication. In our design of the community education forums, we presented strategies to improve physician–patient
communication that were based in the literature and that we assumed would be fairly easy for patients to implement. However, the educators’ experiences with participants suggested that a host of other cultural and communicative barriers may exist that can prevent the implementation of communication strategies that our educators were trying to advocate: What struck me most was . . . one of the women brought up the issue of not asking questions or bringing up concerns with her physicians because she feared she would be judged as being ‘dumb.’ This was immediately taken by the others, including some husbands who were accompanying their wives, and it appeared to be an experience or feeling that most of them had in common: the hesitancy to ask questions or give opinions, worrying that they may be considered to be ignorant by the physician . . . ‘‘he/she knows better, I mostly want to be reassured that I’ll be OK.’’ There was one guy in the audience [who] was saying ‘‘this is all nice and good, this ‘ask questions, be prepared, communicate your concerns’ stuff, but what do we do when it doesn’t work?’’ . . . I realized that while communication training for doctors often gets into heavy detail about what strategies to employ when certain personal
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communication barriers arise, the converse does not seem to exist for patients.
5. Discussion We have gained many valuable lessons based on our undertaking of the development of this ‘‘How to Talk to Your Doctor’’ community education intervention. When we began its development, we envisioned the final program to be the following: (1) effective in helping patients learn skills to communicate more confidently and competently with their health care providers; (2) adaptable for a wide variety of audiences; (3) time-efficient on the part of the participants and the educators; (4) able to be replicated and disseminated by other organizations; and (5) useful and enjoyable for participants. Based on our initial efforts to gather program evaluation evidence, we found that participants’ confidence levels in their ability to communicate effectively with their physician did increase after they completed the education forum, independent of forum site or facilitators. The average amount of increase was 10 points, an effect of moderate size. Empowering patients with increased knowledge and enhanced communication skills is a crucial step in helping to improve their communication behavior in the medical interaction. Furthermore, we found that the improvement in a patient’s confidence level in communication after attending a forum to be similar for all seven sites despite the diverse nature of the community audiences that attended. The broad base of our audience combined with our evaluation findings demonstrating similar experiences across all of those groups indicate that the efficacious results of our ‘‘How to Talk to Your Doctor’’ forums could perhaps be repeated across different communities. Our forum and forums of similar design may have a beneficial educational effect on people differing in gender, age, ethnicity, socioeconomic status, health status, and disease focus. Interestingly, we found similar levels of self-reported improvement in patients’ confidence level regardless of which facilitators lead the different forums. This indicated that effectiveness of the workshop was not only site-independent but also facilitator-independent. These findings collectively point to the feasibility of replicating and disseminating the ‘‘How to Talk to Your Doctor’’ workshops, because a broad pool of facilitators can be developed and can take turns circulating to education forums at different sites, which can lead to an increased degree of flexibility in scheduling forums. Another positive aspect of the ‘‘How to Talk to Your Doctor’’ forums are their length; they can be fully conducted in approximately 2 hours and do not involve day-long events or multiple sessions. Although the ‘‘How to Talk to Your Doctor’’ program’s core components are certainly appropriate for many different audiences and can be disseminated by facilitators of
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varying characteristics, it is still important to tailor the curriculum and activities to the specific needs of the audience. Our curriculum was designed to be flexible enough so that the most basic and relevant information about improving communication skills in the medical interaction can be covered, but it also allows for discussion and activities to be geared towards unique audience needs. Some needs can be predetermined through assessments conducted with a sponsoring organization liaison before the event; examples of changes based on these assessments include accommodating the linguistic needs of a non-English-speaking audience, modifying the length of the forum for senior citizens who are more easily fatigued, or focusing the discussion around a particular disease with which the group has experience. Another strength of our community education forum is its adaptability to a ‘‘train the trainer’’ format. For example, as we were trying to expand dissemination capability to as multi-cultural and multi-lingual as audience as possible, we immediately realized that our staffing and budget limitations would not allow us to individually reach the many culturally diverse communities residing in our local area. Thus, we opted to host a forum utilizing the ‘‘train the trainer’’ model so that we could mobilize more individuals in the community to disseminate our ‘‘How to Talk to Your Doctor’’ message. We partnered with a local community-based multi-cultural service organization, which has health services department staff fluent in approximately 20 different languages and who assist refugees and immigrants to access Houston’s healthcare system. Therefore, we hosted a customized ‘‘training the trainer’’ forum for the group of social workers within this organization. In conducting the ‘‘How to Talk to Your Doctor’’ forums, we have also discovered that many of the participants’ unique needs are not made known until actual dialogue and discussion take place at the forum. Although the facilitators do come prepared with some ideas of what barriers might exist and strategies on how to overcome those barriers, it is very important to hear from the participants themselves as to what they believe prevents them from communicating effectively. For example, we encouraged patients to ask their physician questions, but some patients voiced that they were afraid they would be perceived as ‘stupid’ if they asked too many questions. Another example was when we asked patients to be prepared when they came to their appointments; some shared with us that they were always accompanied by family members, who took the primary role in monitoring treatment management and interactions with the physician. Therefore, it becomes the responsibility of the facilitator to temporarily shift away from the agenda of teaching participants how to utilize communication strategies and to redirect attention on how to overcome the barriers of actually implementing those strategies. We are in the process of designing a follow-up ‘‘How to Talk to Your Doctor—Part 2’’ forum that will address some of the cultural barriers to communication that we have discovered in our initial experience.
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6. Limitations Our program evaluation has several limitations. Whereas the pre–post-self-report surveys do provide preliminary information of participants’ perceived competencies, the design does not allow for behavioral measurements of these competencies. The nature of our program does not allow us to follow patients into their physicians’ offices to ascertain whether they are actually achieving better health outcomes. In addition, our findings relied completely on self-reported data. The increase in confidence scores on the self-report measure may also be due to a social desirability bias, as participants might have enjoyed the forum and felt some obligation to report a positive response to it. Another limitation to our evaluation was that the power for detecting the group by time interaction was small, since the numbers of participants for several of the sites was less than 10. In addition, the absence of a comparison group of similar patients who did not attend the forum precludes us from determining how much of the increases in perceived competence are due solely to our program.
7. Practice implications Given previous research that demonstrates health benefits through active patient participation in the medical encounter, the ‘‘How to Talk to Your Doctor’’ community education forums aim to promote favorable patient outcomes by activating patients to engage and participate in the medical encounter. To the extent that these goals are met, the forums potentially represent a simple and inexpensive mechanism through which communities can enhance the health of their members. Because these are preliminary findings of a continually evolving and improving program, further work is needed to evaluate the formal effects of the ‘‘How to Talk to Your Doctor’’ forums on actual communication and health related behavior.
8. Conclusion In the end, a health education program is well-received by the community if audiences feel like they had a pleasant learning experience and were able to learn something tangible and useful about improving their health or the health of a loved one. Since the inception of our ‘‘How to Talk to Your Doctor’’ education forums, the number of organizations and community groups interested in our program continues to rise, and the community requests sometimes exceed existing resources to attend to all audiences. Nevertheless, we continue to conduct 8–10 forums per year and to discover new patient groups that can benefit from the education forums. We also continue to learn about innovative health communication research findings that can help us develop ways to enhance our curriculum so
that the program can be empowering as possible to the patient audiences it serves.
Acknowledgements The authors would like to acknowledge and thank all the individuals who served as facilitators for the community education forums: Tracie Collins, Wednesday Foster, Alicia Gladney, Howard Gordon, Paul Haidet, Kimberly J. O’Malley, Marsha Richardson, Barbara Sharf, Richard L. Street Jr., Maria Suarez-Almazor, LeChauncy Woodard, Darrell Zeno. A special thanks is also extended to all forum participants and to the organizations that served as forum host sites. This project was co-funded by grant number PO1 HS10876 from the Agency for Healthcare Research and Quality and the National Center of Minority Health and Health Disparities and supported by the use of facilities at the Houston VA Medical Center. Dr. Haidet is supported by a career development award from the office of Research and Development, Health Services R&D Service, US Department of Veteran Affairs. The opinions and findings contained herein are those of the authors and do not necessarily represent the views of the University of North Carolina at Chapel Hill, Department of Veterans Affairs, Baylor College of Medicine, or Texas A&M University.
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A.N. Tran et al. / Patient Education and Counseling 52 (2004) 113–121 [11] Greenfield S, Kaplan SH, Ware JE, Yano EM, Frank HJ. Patients’ participation in medical care: effects on blood sugar and quality of life in diabetes. J Gen Int Med 1988;3:448–57. [12] Ruusuvuori J. Looking means listening: coordinating displays of engagement in doctor–patient interaction. Soc Sci Med 2001; 52:1093–108. [13] Marvel MK, Epstein RM, Flowers K, Beckman HB. Soliciting the patient’s agenda: have we improved? JAMA 1999;281:283–7. [14] Marquis MS, Ross-Davies A, Ware JE. Patient satisfaction and change in medical care provider a longitudinal study. Med Care 1983;21: 821. [15] Buller MK, Buller DB. Physicians’ communication style and patient satisfaction. J Health Soc Behav 1987;28:375–88. [16] Heisler M, Bouknight RR, Hayward RA, Smith DM, Kerr EA. The relative importance of physician communication, participatory decision making, and patient understanding in diabetes self-management. J Gen Intern Med 2002;17:243–52. [17] Levinson W, Stiles WB, Inui TS, Engle R. Physician frustration in communicating with patients. Med Care 1993;31:285–95. [18] Street Jr RL. Active patients as powerful communicators: the linguistic foundation of participation in health care. In: Robinson WP, Giles H, editors. The new handbook of language and social psychology. Chichester: Wiley; 2001. p. 541–60. [19] Roter DL. Patient participation in the patient-provider interaction: the effects of patient question asking on the quality of the interaction, satisfaction, and compliance. Health Educ Monogr 1977;5:281–315. [20] Frederikson LG, Bull PE. Evaluation of a patient education leaflet designed to improve communication in medical consultations. Patient Educ Couns 1995;25:51–7. [21] Cegala DJ, Post DM, McClure L. The effects of patient communication skills training on the discourse of older patients during a primary care interview. J Am Geriatr Soc 2001;49:1505–11. [22] Kleinman A. The illness narratives: suffering, healing, and the human condition. New York: Basic Books; 1988. [23] Sharf BF. Physician–patient communication as interpersonal rhetoric: a narrative approach. Health Commun 1990;2:217–32. [24] Street Jr. RL. Information-giving in medical consultations: the influence of patients’ communicative styles and personal characteristics. Soc Sci Med 1991;32:541–8. [25] Street Jr. RL. Communicative styles and adaptations in physician– parent consultations. Soc Sci Med 1992;34:1155–63. [26] Henbest RJ, Stewart MA. Patient-centeredness in the consultation. 2. Does it really make a difference? Fam Pract 1990;7:28–33. [27] Heszen-Klemens I, Lapinska E. Patient–physician interaction, patients’ health behavior and effects on treatment. Soc Sci Med 1984;19:9–18. [28] Carter WB, Inui TS, Kukull WA, Haigh VH. Outcome-based patient– physician interaction analysis. II. Identifying effective provider and patient behavior. Med Care 1982;20:550–65. [29] Young M, Klingle RS. Silent partners in medical care: a crosscultural study of patient participation. Health Commun 1996; 8:29–54. [30] Street Jr. RL, Voigt B. Patient participation in deciding breast cancer treatment and subsequent quality of life. Med Decis Making 1997;17:298–306. [31] Haidet P, Paterniti DA, Dains JE, Hechtel L, Chang T, Tseng E, Rogers JC. Medical student attitudes toward the physician–patient relationship. Med Ed 2002;36:568–74.
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[32] Roter DL, Hall JA, Kern DE, Barker LR, Cole KA, Roca RP. Improving physicians’ interviewing skills and reducing patients’ emotional distress: a randomized clinical trial. Arch Int Med 1995; 155:1877–84. [33] Smith RC, Lyles JS, Mettler J, Stoffelmayr BE, Van Egerent LF, Marshall AA, et al. The effectiveness of intensive training for residents in interviewing: a randomized, controlled study. Ann Intern Med 1998;128:118–26. [34] Street Jr. RL. Interpersonal communication skills in health care contexts. In: Greene JO, Burleson BR, editors. Handbook of communication and social interaction skills. Mahwah (NJ): Erlbaum; 2003. p. 909–34. [35] Cegala DJ, McClure L, Marinelli TM, Post DM. The effects of communication skills training on patients’ participation during medical interviews. Patient Educ Couns 2000;41:209–22. [36] Thompson SC, Nanni C, Schwankovsky L. Patient-oriented interventions to improve communication in a medical office visit. Health Psychol 1990;9:390–404. [37] Robinson EJ, Whitfield MJ. Improving the efficiency of patients’ comprehension monitoring: a way of increasing patients’ participation in general practice consultations. Soc Sci Med 1995;21:915–9. [38] Anderson LA, DeVellis BM, DeVellis RF. Effects of modeling on patient communication, satisfaction, and knowledge. Med Care 1985; 25:1044–56. [39] Street Jr. RL, Voigt B, Geyer C, Manning T, Swanson GP. Increasing patient involvement in choosing treatment for early breast cancer. Cancer 1995;76:2275–85. [40] Davison BJ, Degner LF. Empowerment of men newly diagnosed with prostate cancer. Cancer Nurs 1997;20:187–96. [41] Rost KM, Carter W, Inui T. Introduction of information during the initial medical visit: consequences for patient follow-through with physician recommendations for medication. Soc Sci Med 1989; 28:315–21. [42] Street Jr. RL, Millay B. Analyzing patient participation in medical encounters. Health Commun 2001;13:61–73. [43] Doeshler MP, Saber BG, Franks P, Fiscella K. Racial and ethnic disparities in perceptions of physician style and trust. Arch Fam Med 2000;9:1156–63. [44] Freimuth V, Quinn S, Thomas S, Cole G, Zook E, Duncan T. African Americans’ views on research and the tuskegee syphilis study. Soc Sci Med 2001;52:797–808. [45] Murray-Garcia J, Selby JV, Schmittdiel J, Grumbach K, Quesenberry CP. Racial and ethnic differences in a patient survey: patients’ values, ratings, and reports regarding physician primary care performance in a large health maintenance organization. Med Care 2000;38:300–10. [46] National Institute on Aging (http://www.nia.nih.gov/health/pubs/ talking/talkwithdoc.pdf). [47] Bayer Institute for Healthcare Communication. PREPARE to be partners in your health care: six steps to help you get more out of your doctor’s visit. Ontario: Bayer Institute for Health Care Communication Inc.; 1999. [48] American Medical Association Medical Library (http://www.amaassn.org/insight/gen_hlth/doctor/communic.htm). [49] Haidet P, O’Malley KJ, Richards B. An initial experience with ‘Team Learning’ in medical education. Acad Med 2002;77:40–4. [50] Coverdale J, Haidet P, Hunt D. Learning by doing: teaching critical appraisal of randomized trials by performing an in-class randomized trial. Acad. Med., in press.
Empowering communication: a community-based intervention for patients Anh N. Trana,*, Paul Haidetb,c, Richard L. Street Jr.d, Kimberly J. O’Malleyb,c, Frank Martinb,c, Carol M. Ashtonb,c a
Department of Health Behavior and Health Education, School of Public Health, University of North Carolina at Chapel Hill, CB #7440, Chapel Hill, NC 27599-7440, USA b Houston Center for Quality of Care and Utilization Studies, US Department of Veterans Affairs Health Services Research Center of Excellence at the Houston VA Medical Center, 2002 Holcombe Boulevard, VAMC (152), Houston, TX 77030, USA c Department of Medicine, Baylor College of Medicine, Houston, TX, USA d Department of Communication, Texas A&M University, 4234 TAMU, College Station, TX 77843-4234, USA Received 28 May 2002; received in revised form 3 December 2002; accepted 9 December 2002
Abstract The ‘‘How to Talk to Your Doctor’’ community education forums operate under the assumption that information exchange and consumer involvement in healthcare can empower communities in need. We report on the development and preliminary evaluation of this communitybased intervention designed to activate and enhance patients’ communicative abilities in the medical encounter. We review evidence supporting the feasibility of and benefits that can be expected from improving patients’ communication competency. Our intervention is simple and flexible so, therefore, can be portable to a large number of communities. Our preliminary evaluation suggests that the intervention is well-received and produces improved self-perceptions of communication competence across diverse settings and participants. We describe our intervention and its development and dissemination as a model for improving patients’ communicative abilities through a communitybased, active learner approach. By sharing our experiences, the barriers we encountered, and our ongoing efforts to improve patient communication in the medical encounter, we hope to empower patients to communicate better with their physicians. # 2003 Elsevier Science Ireland Ltd. All rights reserved. Keywords: Physician–patient relations; Persuasive communication; Patient-centered care patient activation; Cross-cultural comparison; Community networks
1. Introduction Patient–physician communication is a critical element of high quality healthcare: it influences patients’ ability to recall physicians’ recommendations [1], achieve satisfaction [1–6], adhere to treatment regimens [1–3,5], and even achieve favorable biomedical health outcomes [7,8]. Poor communication between physicians and patients interferes with patients’ ability to understand their options, cope with anxiety caused by illness, and make informed decisions about the next diagnostic and therapeutic steps to take for their sickness [2,8–13]. Unfortunately, patients and physicians often experience problems communicating with one another. Patients’ frequent complaints about poor communication with physicians, hospital workers, and health care professionals, in the * Corresponding author. Tel.: þ1-919-451-1129. E-mail address: [email protected] (A.N. Tran).
private as well as public sector, are universal findings on patient satisfaction surveys [14–16]. Physicians also experience frustration with patients who have difficulty discussing their symptoms, expressing their concerns, and understanding recommendations [17]. Traditionally, interventions designed to improve communication in the medical encounter have focused on the physician [18]. Evidence shows, however, that the patient’s communicative behavior exerts a strong influence on the physician’s responses [1,5]. While it is difficult to teach physicians new styles of interpersonal communication, research also shows that brief and simple interventions can effectively teach patients to communicate better with their physicians [9,10,19–21]. In an effort to improve patient–physician interactions from the patient’s position, health services researchers and educators at the Houston Center for Quality of Care and Utilization Studies have launched an innovative, community-wide public service health education program,
0738-3991/$ – see front matter # 2003 Elsevier Science Ireland Ltd. All rights reserved. doi:10.1016/S0738-3991(03)00002-8
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‘‘How to Talk to Your Doctor.’’ This community-based education program is based on techniques proven to effectively teach patients how to influence the way they and their physicians communicate. Our program aims to teach patients to get information about their health more effectively and to participate more actively in decisions about their care, thereby fostering care that more accurately reflects their personal values and preferences. The program agenda is designed to help participants recognize barriers to good patient–physician communication, learn good patient communication techniques, and practice these new skills.
2. Rationale and development of community education forums
communities, particularly communities with poorer and minority residents. For example, patients who participated in previous research received communication skills training typically after they had already scheduled an appointment at a particular clinic or while they were waiting for their consultation [8,9,11]. In both cases, the training was provided only to those patients who decided to seek care and who were already at a clinic where the program was offered. Individuals who are reluctant to seek medical care or whose health care providers do not offer patient communication resources would receive no benefit at all in such a paradigm. Moreover, people who are reluctant to seek health care may not do so because of a general mistrust with health care institutions or apprehension about medical care, a problem possibly related to communication issues and one that is often true for poorer and minority populations [43–45].
2.1. Rationale 2.2. Development The ‘‘How to Talk to Your Doctor’’ community education forum is based on three premises: (1) patients who are active communicators achieve better health outcomes; (2) interventions aimed at improving patient communication can be less time- and resource-intensive than those aimed at improving physician communication; and (3) there is a need to reach patients in diverse communities. We briefly discuss these three premises as follows. First, patients who are active communicators often receive better health care and experience better outcomes than do patients who are passive communicators. A growing body of evidence indicates that patients who ask questions, express their concerns, discuss their health experiences, and state their preferences for care receive more information, support, and reassurance from physicians [9,22–25]. Physicians in such situations often have a better understanding of the patient’s health needs, requirements, and expectations [18,26]. Patients who actively participate typically acquire a better understanding of their health issues [27,28], are more committed to treatment plans [10,29], gain a sense of control over medical decisions [30], and achieve more effective disease management [7,11]. Secondly, patient activation interventions are generally simpler and more easily implemented than interventions aimed at changing physician behavior. Physicians typically have communicative styles that require large amounts of time and effort to change [5,24,31–34]. Unlike physicians, patients usually do not need to learn an extensive new repertoire of new communicative behaviors, but, rather, require a timely intervention to legitimize and encourage their participation and suggest strategies (e.g. writing questions and concerns before the visit, rehearsing) to facilitate more active communication in the encounter [9,21,34–42]. Finally, there is a need to reach many diverse patients at the community level. In spite of proven effectiveness at the level of individual patients, activation interventions have traditionally demonstrated limited scope and impact within
We developed the ‘‘How to Talk to Your Doctor’’ forum as a community education intervention rather than as a clinical intervention in an effort to reach a broad spectrum of people who might not otherwise have access to communications skills education. We used two strategies to disseminate the program within different communities. First, the program was designed to provide workshops and materials to various groups of people who routinely need medical care (e.g. breast cancer survivors, elderly groups) but may not routinely seek it. Second, the program was designed to be easily adapted to a ‘‘train the trainer’’ format for health professionals (e.g. social workers, case managers, nurses). Such health professionals, in turn, could disseminate the intervention to their clients. We began the development process by consulting existing resources on patient communication education in the public domain. Our sources included the National Institute on Aging website [46], the Bayer Institute for Healthcare Communication [47], and the American Medical Association Medical Library website [48]. Instructional content for the program was derived from these and from our review of descriptive research about features of participatory patient communication [42]. In an effort to model active participation, we designed activities that encourage participants to openly discuss issues and share experiences, such as small breakout groups, informal discussions, ‘trigger’ video tapes, and role-play. Research on symbolic modeling and cognitive rehearsal suggest the value of such approaches [49,50]. To reinforce program content, we designed a set of professionally printed materials; these are collated into an easy-to-read guidebook that we have translated into English and Spanish. The main development costs of conducting the ‘How to Talk to Your Doctor’ community forum consisted of printing costs for the guidebook. All of the educators for our program were volunteers, and all attended a 2-h training session prior to conducting their first forum. The community sites where
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The ‘‘How to Talk to Your Doctor’’ community educational forum is a 2-h program intended for small groups (n ¼ 20–40), especially those that can benefit from improved patient–physician communication, such as elderly or low-English proficiency groups. The main goal of the community education forum is to promote active patient communication in an effort to improve health. Two co-educators, a physician and a non-physician, present each forum. We use this combination so that both voices in the patient–physician relationship are represented and can share their unique perspectives in a collaborative manner. This format also allows the educators to directly address any concerns participants may have that are specifically related to a physician role or a patient role. Though the implementation of this program is not dependent upon having both types of facilitators present, we feel that it enhances the dialogue that takes place by allowing both perspectives to enter the conversation about issues of interest raised by participants.
During the forum, each participant receives a ‘‘How to Talk to Your Doctor’’ guidebook. This 20-page guidebook is organized along the four main discussion topics and includes checklists and areas for participants to record their thoughts. The guidebook content and materials are available in English and Spanish, and the graphic cover art for the Spanish language booklets features a Hispanic family as the dominant photo-image. We received guidance in developing the booklet from sources that included physician-researchers at the Houston Center for Quality of Care and Utilization Studies, a pilot test group from a local clinic, and an advisory board consisting of diverse community leaders in the Houston area who demonstrated interest and/or expertise in the area of minority health issues and health disparities research. We conducted readability tests on the guidebook to ensure that materials were produced with a 7th–8th grade reading level. Aside from the booklet, additional educational materials used during the forum include videotapes with examples of patient–physician interactions, flip charts, and role-play scripts. During a typical forum, we generate the content of the first two discussion topics (recognizing barriers to communication and examples of helpful communication styles) by asking participants to respond to ‘trigger’ videotapes and provocative questions about patient–physician interactions. For the third discussion topic, we introduce three ‘tips’ for improving patient–physician communication that include: (A) Asking questions to receive information; (B) Being prepared for visit; and (C) expressing one’s Concerns. We use the ‘ABC’ mnemonic as a memory aid for these tips and include a punch-out wallet-sized card on the back cover of the guidebook. The card additionally lists reminders for patients on how to use the ‘tips’ for improving patient– physician communication.
3.2. Content of community education forum
3.3. Timeline of community education forum
The forum is divided into four main discussion topics: (1) recognizing barriers to good patient–physician communication, (2) recognizing examples of helpful patient–physician communication styles, (3) understanding how to apply ‘‘tips’’ to improve patient–physician communication, and (4) practicing tips to improve patient–physician communication. The learning objectives are listed in Table 1.
At the beginning of a forum, the facilitators provide participants with a guidebook and ask them to complete a consent form and pre-intervention survey. Both facilitators and participants introduce themselves to the group and share their thoughts about why the topic of patient–physician communication is of interest to them. Facilitators then review the program goals, learning objectives, and session timeline. Next, the facilitators transition to the first main discussion topic: recognizing barriers to good patient–physician communication, ask participants to list communication barriers that they face with their own physicians, and record the responses on a large flip chart. To encourage group discussion, facilitators may use a video that features scenes of patient– physician communication and ask participants to point out communication barriers they detect from the video vignettes. The second discussion topic centers on participant recognition of examples of good patient–physician communication styles. The guidebook contains a checklist of good physician and patient communication traits. Facilitators
we have conducted our forums all donated space for the forums. We usually provided light snacks, drinks, and a drawing for a few small gifts at the forums. The cost for snacks and gifts usually ranged approximately US$ 100 per forum, depending on the number of participants. In terms of the guidebooks, we utilized local university media printing services to help design and produce the guidebooks. A reprint of 1000 guidebooks cost approximately US$ 3–4 per copy.
3. Conducting and disseminating the community education forums 3.1. Logistics of ‘‘How to Talk to Your Doctor’’ community education forum
Table 1 Learning objectives of ‘‘How to Talk to Your Doctor’’ community education forums No.
Learning objectives
1 2 3
Recognize barriers to good patient–physician communication Describe reasons for good patient–physician communication Recognize examples of good physician and patient communication traits Apply ‘‘tips’’ for improving patient–physician communication Demonstrate good patient–physician communication techniques Recall good patient–physician communication strategies
4 5 6
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discuss the issues of understanding both patient and physician roles, acknowledging how physicians and patients can have different communication styles, recognizing what factors might affect their styles, and identifying good physician and patient communication traits. The third discussion topic centers on the application of ‘‘tips’’ for improving patient–physician communication. Facilitators discuss communication techniques that have been shown to improve the quality of patient participation in medical interactions. Facilitators divide the audience into small groups, assign them to complete an exercise in the booklet and report back to the full group. The exercise contains common communication barriers faced in the medical interaction, and participants are asked to select possible techniques to overcome those barriers and then plan out the dialogues that they would have with their physicians to do so. If time allows, facilitators can show participants video clips featuring scenes of patient–physician communication in order to identify examples of good communication techniques. The final activity in the community education forum is practicing techniques for good patient–physician communication. Here, facilitators introduce the scripts contained in the booklet, role-play the scripts with each other, and ask the audience to give their critique of the interaction. There is also an option to role-play in small groups or choose volunteers to role-play. Facilitators conclude the community education forum with a review of the main points. In the booklet, there is a place for participants to contemplate about their next physician visit, write down any problem they expect to face, and plan a strategy to address it. Facilitators remind participants to carry the wallet-sized reminder card with them and use it as a tool to remind them of good communication techniques. Finally, facilitators ask participants to complete the post-forum surveys. The timeline description above is intended to give readers a basic impression of the activities that occur within the forum. For more specific details about the forum curriculum or the guidebook content, readers are encouraged to contact the primary author. 3.4. Disseminating and organizing the community education forums To disseminate the ‘‘How to Talk to Your Doctor’’ forum, we recruited interested groups through outreach contacts, referrals from our community advisory board, and contacts that we made during academic or community presentations about racial disparities research being conducted at our center. Our specific recruitment methods varied with respect to the organization we focused upon. In general, our staff contacted prospective audiences using a list of communitybased organizations or organizations serving public health needs in the surrounding area. During the initial contact, our staff identified the person designated with the responsibility
of scheduling events. Our staff member described the nature of the community education program and provided interested organizations with an information packet that consisted of a curriculum guidebook, a published article about the ‘‘How to Talk to Your Doctor’’ program, and a local newspaper article highlighting our center’s research efforts regarding patient–physician communication. We asked organizations who agree to be host sites to provide a site liaison (e.g. community health nurse, program coordinator) to facilitate success of the forums. The liaison can be anyone with the organization and oftentimes is the coordinator or leader of the organization. This individual assists with reserving space, developing marketing strategies, and estimating the number of people that will attend the forum. The liaison also provides information on potential forum participants. We provide the liaison with a screening template to provide a general profile of the expected audience.
4. Evaluation to date In our initial efforts to evaluate the extent to which our education program goals were met, we collected basic program data using pre- and post-intervention surveys. Within the pre-intervention survey, participants reported demographic information, such as gender, age, education, ethnicity, employment, and income as well as their confidence in communication skills when talking to healthcare providers. Participants also completed a post-intervention survey, which included the confidence in communication skills assessment, questions about the length and specificity of the forum, and questions related to the quality of the materials and presentation. The post-forum participant survey also contained two open-ended questions (‘‘What did you like BEST about the presentation?’’ and ‘‘What did you like LEAST about the presentation?’’). In addition to the participant survey, we conducted a post-hoc, open-ended survey of forum educators. On this survey, we asked educators to respond to the following question: ‘‘Please write a brief paragraph describing an experience that stands out in your memory while you facilitated the How to Talk to Your Doctor community education forum.’’ We calculated descriptive statistics for participant demographics (gender, age, ethnicity, education, employment, and general health). Throughout the period of June 2001 to February 2002, a total of 110 participants consented to take part in the community education forums. Participants were 73% female, had an average age of 53 (19.1) years and ranged in age from 20 to 91 years. Their self-reported ethnicity was 52% African American, 24% White, 20% Hispanic, <1% Asian Indian, <1% Vietnamese, and 3% other. Sixty-one percent of the participants reported that they attended some college, 55% reported working full-time, and 35% reported their general health as Very Good or Excellent. The number of participants at each site ranged
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Table 2 Patient Confidence in Communication Scale (PCCS) No.
Item
1 2 3 4 5 6
I I I I I I
can easily list problems or barriers that get in the way of good patient-doctor communication can easily list the reasons why I need to communicate effectively with my doctor can easily give examples of what my role, as a patient, should be when I talk to my doctor can easily list goals I want to achieve when talking to my doctor can easily give examples of what a good doctor’s role should be when he/she interacts with me know ways to improve my communication with my doctor
Note: Response categories for all items were (1) Strongly Disagree, (2) Disagree, (3) Slightly Disagree, (4) Slightly Agree, (5) Agree, and (6) Strongly Agree. Subscale totals were calculated by summing all items and rescaling totals to a 0–100 scale.
from 4 to 30. A total of 11 educators participated in the community education forums. All of the educators were researchers or research assistants, and all were involved in conducting patient–physician communication research. Of the educators, eight were female and five were physicians. We hosted the forum at seven different community sites. These sites represented a number of unique populations, including a community mammography clinic (healthcare provider audience), a senior community center (predominantly African American senior citizen audience), an employee health education program (employee audience), a county healthcare clinic (breast cancer support group audience), a multi-cultural social service agency (social worker audience who work with immigrant and Englishlimited proficiency community), a community mammography clinic (Spanish-speaking breast cancer support group audience), and a church-based senior citizen nutrition program (predominantly African American audience). Participants’ confidence in their ability to effectively communicate with their physician was assessed using a six-item measure developed as part of our program. The Patient Confidence in Communication Scale (PCCS), presented in Table 2, asks participants to report their ability to list goals, barriers, and necessary skills for effective communication with their physician. The PCCS is a Likert-type scale with six response categories that range from ‘‘Strongly Disagree’’ to ‘‘Strongly Agree.’’ Scores on the PCCS are computed by summing responses to the six items and rescaling total scores to range from 0 to 100, with higher scores indicating more patient communication confidence. Since we developed the PCCS for our forums, we examined the factor structure and internal consistency of the items. Exploratory factor analyses provided evidence that one factor formed the basis for the seven PCCS items. The single factor accounted for 53 and 59% of the item variance at pre- and post-intervention, respectively, and communalities ranged from 0.28 to 0.66 at pre- and post-intervention. Internal consistency estimates at pre- and post-intervention were 0.81 and 0.86, respectively. Findings from the repeated measures ANOVA (Fig. 1) revealed that the group by time interaction was not statistically significant (Fð6; 63Þ ¼ 2:0, P ¼ 0:09) indicating that the mean pre–post-intervention improvement was not
statistically different for the participants at the seven centers. The test of the main effect of time was statistically significant (Fð1; 63Þ ¼ 35:1, P < 0:001). Specifically, mean PCCS scores averaged over all participants increased 10.1 points (13.7) from 73.2 to 83.3. The effect size of this increase was moderate, as indicated by the associated partial eta squared of 0.36. The partial eta squared indicates the proportion of total variability in PCCS scores attributable to the time factor. In addition, findings also indicated a significant main effect of group (Fð6; 63Þ ¼ 3:2, P ¼ 0:008, eta squared of 0.23), indicating that the average score on the PCCS over the two occasions differed for the participants at the seven centers and the effect of the group factor was low to moderate. The highest scoring group, for example, had a mean PCCS score averaged over the two assessment occasions that was 15.9 points higher than the lowest scoring group. Overall, these findings indicate that though the participants at the centers reported different levels of confidence in communication at both pre- and post-intervention and the level of confidence increased from before to after the intervention, the increased amount was not statistically different for participants at the different centers. Our analysis of participants’ and facilitators’ responses to the open-ended questions was guided by the question: ‘‘What meaning and impact did the community education forums have for participants and trainers?’’ All authors individually read the written comments from the participants and the educators. We then engaged in a series of three iterations of group discussion, notation of written comments, and individual re-reading of written comments in order to identify common and stable themes. We presented our results back to the educators to comment on the plausibility of our conclusions. Forum participants provided many comments about what they enjoyed the most and least about the education forums. Some common themes included the following: (1) participants enjoyed interactive learning that involved class participation/role-play; (2) participants felt they could actually leave the training knowing specific tips for physician’s visits; (3) the training helped address existing communication barriers; and (4) trainers showed genuine concern for participants. Many participants expressed feeling increased
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Fig. 1. Mean Patient Confidence in Communication Scale (PCCS) values at pre- and post-intervention occasions for the seven centers.
confidence in their own communication abilities because they had learned tangible skills to use in the future. Some participants requested more information from the trainers at the end of the sessions, and many of the communities have expressed interest in scheduling repeat and follow-up sessions. Regarding the educators, their reflective narratives corroborated the participants’ comments: What stands out most about the experience was the way we were able to engage the group as our presentation progressed. The seniors seemed to truly value the information that they received. During this workshop, participants openly expressed their experiences with doctor patient communication and what they perceived to be barriers. It was quite clear early on that many people had wanted to participate in a workshop about ‘How to Talk to Your Doctor’ but had never had the opportunity. In addition to the high value of the community education forums noted by the participants and educators, a second theme that emerged on our review of educator responses centered around the issue of strategies to improve communication. In our design of the community education forums, we presented strategies to improve physician–patient
communication that were based in the literature and that we assumed would be fairly easy for patients to implement. However, the educators’ experiences with participants suggested that a host of other cultural and communicative barriers may exist that can prevent the implementation of communication strategies that our educators were trying to advocate: What struck me most was . . . one of the women brought up the issue of not asking questions or bringing up concerns with her physicians because she feared she would be judged as being ‘dumb.’ This was immediately taken by the others, including some husbands who were accompanying their wives, and it appeared to be an experience or feeling that most of them had in common: the hesitancy to ask questions or give opinions, worrying that they may be considered to be ignorant by the physician . . . ‘‘he/she knows better, I mostly want to be reassured that I’ll be OK.’’ There was one guy in the audience [who] was saying ‘‘this is all nice and good, this ‘ask questions, be prepared, communicate your concerns’ stuff, but what do we do when it doesn’t work?’’ . . . I realized that while communication training for doctors often gets into heavy detail about what strategies to employ when certain personal
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communication barriers arise, the converse does not seem to exist for patients.
5. Discussion We have gained many valuable lessons based on our undertaking of the development of this ‘‘How to Talk to Your Doctor’’ community education intervention. When we began its development, we envisioned the final program to be the following: (1) effective in helping patients learn skills to communicate more confidently and competently with their health care providers; (2) adaptable for a wide variety of audiences; (3) time-efficient on the part of the participants and the educators; (4) able to be replicated and disseminated by other organizations; and (5) useful and enjoyable for participants. Based on our initial efforts to gather program evaluation evidence, we found that participants’ confidence levels in their ability to communicate effectively with their physician did increase after they completed the education forum, independent of forum site or facilitators. The average amount of increase was 10 points, an effect of moderate size. Empowering patients with increased knowledge and enhanced communication skills is a crucial step in helping to improve their communication behavior in the medical interaction. Furthermore, we found that the improvement in a patient’s confidence level in communication after attending a forum to be similar for all seven sites despite the diverse nature of the community audiences that attended. The broad base of our audience combined with our evaluation findings demonstrating similar experiences across all of those groups indicate that the efficacious results of our ‘‘How to Talk to Your Doctor’’ forums could perhaps be repeated across different communities. Our forum and forums of similar design may have a beneficial educational effect on people differing in gender, age, ethnicity, socioeconomic status, health status, and disease focus. Interestingly, we found similar levels of self-reported improvement in patients’ confidence level regardless of which facilitators lead the different forums. This indicated that effectiveness of the workshop was not only site-independent but also facilitator-independent. These findings collectively point to the feasibility of replicating and disseminating the ‘‘How to Talk to Your Doctor’’ workshops, because a broad pool of facilitators can be developed and can take turns circulating to education forums at different sites, which can lead to an increased degree of flexibility in scheduling forums. Another positive aspect of the ‘‘How to Talk to Your Doctor’’ forums are their length; they can be fully conducted in approximately 2 hours and do not involve day-long events or multiple sessions. Although the ‘‘How to Talk to Your Doctor’’ program’s core components are certainly appropriate for many different audiences and can be disseminated by facilitators of
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varying characteristics, it is still important to tailor the curriculum and activities to the specific needs of the audience. Our curriculum was designed to be flexible enough so that the most basic and relevant information about improving communication skills in the medical interaction can be covered, but it also allows for discussion and activities to be geared towards unique audience needs. Some needs can be predetermined through assessments conducted with a sponsoring organization liaison before the event; examples of changes based on these assessments include accommodating the linguistic needs of a non-English-speaking audience, modifying the length of the forum for senior citizens who are more easily fatigued, or focusing the discussion around a particular disease with which the group has experience. Another strength of our community education forum is its adaptability to a ‘‘train the trainer’’ format. For example, as we were trying to expand dissemination capability to as multi-cultural and multi-lingual as audience as possible, we immediately realized that our staffing and budget limitations would not allow us to individually reach the many culturally diverse communities residing in our local area. Thus, we opted to host a forum utilizing the ‘‘train the trainer’’ model so that we could mobilize more individuals in the community to disseminate our ‘‘How to Talk to Your Doctor’’ message. We partnered with a local community-based multi-cultural service organization, which has health services department staff fluent in approximately 20 different languages and who assist refugees and immigrants to access Houston’s healthcare system. Therefore, we hosted a customized ‘‘training the trainer’’ forum for the group of social workers within this organization. In conducting the ‘‘How to Talk to Your Doctor’’ forums, we have also discovered that many of the participants’ unique needs are not made known until actual dialogue and discussion take place at the forum. Although the facilitators do come prepared with some ideas of what barriers might exist and strategies on how to overcome those barriers, it is very important to hear from the participants themselves as to what they believe prevents them from communicating effectively. For example, we encouraged patients to ask their physician questions, but some patients voiced that they were afraid they would be perceived as ‘stupid’ if they asked too many questions. Another example was when we asked patients to be prepared when they came to their appointments; some shared with us that they were always accompanied by family members, who took the primary role in monitoring treatment management and interactions with the physician. Therefore, it becomes the responsibility of the facilitator to temporarily shift away from the agenda of teaching participants how to utilize communication strategies and to redirect attention on how to overcome the barriers of actually implementing those strategies. We are in the process of designing a follow-up ‘‘How to Talk to Your Doctor—Part 2’’ forum that will address some of the cultural barriers to communication that we have discovered in our initial experience.
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6. Limitations Our program evaluation has several limitations. Whereas the pre–post-self-report surveys do provide preliminary information of participants’ perceived competencies, the design does not allow for behavioral measurements of these competencies. The nature of our program does not allow us to follow patients into their physicians’ offices to ascertain whether they are actually achieving better health outcomes. In addition, our findings relied completely on self-reported data. The increase in confidence scores on the self-report measure may also be due to a social desirability bias, as participants might have enjoyed the forum and felt some obligation to report a positive response to it. Another limitation to our evaluation was that the power for detecting the group by time interaction was small, since the numbers of participants for several of the sites was less than 10. In addition, the absence of a comparison group of similar patients who did not attend the forum precludes us from determining how much of the increases in perceived competence are due solely to our program.
7. Practice implications Given previous research that demonstrates health benefits through active patient participation in the medical encounter, the ‘‘How to Talk to Your Doctor’’ community education forums aim to promote favorable patient outcomes by activating patients to engage and participate in the medical encounter. To the extent that these goals are met, the forums potentially represent a simple and inexpensive mechanism through which communities can enhance the health of their members. Because these are preliminary findings of a continually evolving and improving program, further work is needed to evaluate the formal effects of the ‘‘How to Talk to Your Doctor’’ forums on actual communication and health related behavior.
8. Conclusion In the end, a health education program is well-received by the community if audiences feel like they had a pleasant learning experience and were able to learn something tangible and useful about improving their health or the health of a loved one. Since the inception of our ‘‘How to Talk to Your Doctor’’ education forums, the number of organizations and community groups interested in our program continues to rise, and the community requests sometimes exceed existing resources to attend to all audiences. Nevertheless, we continue to conduct 8–10 forums per year and to discover new patient groups that can benefit from the education forums. We also continue to learn about innovative health communication research findings that can help us develop ways to enhance our curriculum so
that the program can be empowering as possible to the patient audiences it serves.
Acknowledgements The authors would like to acknowledge and thank all the individuals who served as facilitators for the community education forums: Tracie Collins, Wednesday Foster, Alicia Gladney, Howard Gordon, Paul Haidet, Kimberly J. O’Malley, Marsha Richardson, Barbara Sharf, Richard L. Street Jr., Maria Suarez-Almazor, LeChauncy Woodard, Darrell Zeno. A special thanks is also extended to all forum participants and to the organizations that served as forum host sites. This project was co-funded by grant number PO1 HS10876 from the Agency for Healthcare Research and Quality and the National Center of Minority Health and Health Disparities and supported by the use of facilities at the Houston VA Medical Center. Dr. Haidet is supported by a career development award from the office of Research and Development, Health Services R&D Service, US Department of Veteran Affairs. The opinions and findings contained herein are those of the authors and do not necessarily represent the views of the University of North Carolina at Chapel Hill, Department of Veterans Affairs, Baylor College of Medicine, or Texas A&M University.
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