Johns Hopkins Aims to Increase Patient-Provider communication through web based video training sessions with patients
A cancer diagnosis is a life-altering event. The Journal of Clinical Oncology and the Journal of General Internal Medicine report that patients are often unprepared to discuss their treatment plan with their physicians, and as a result can feel overwhelmed and anxious. These negative emotions can influence the patient-clinician relationship, as Alliance to Advance Patient-Centered Cancer Care Principal Investigator Dr. Adrian Dobs explains: “Doctors are busy, patients don’t know what to ask, they’re overwhelmed with the diagnosis, they’re overwhelmed with the choices that they’re being given and the communication between the patient and the health care provider can be very strained.”
In order to close this gap and stimulate meaningful conversations, Dr. Dobs is working with Co-Investigator Dr. Debra Roter and the research teams at the Johns Hopkins Bloomberg School of Public Health and the Johns Hopkins University School of Medicine on an intervention focused on strengthening patient-provider communication.
Dr. Roter describes the core of the intervention as a skill library of very brief (10-30 seconds) video clips featuring four cancer patients, their care partners and physicians. Each video subject has a distinct background, social context, primary physical and mental health concerns, lifestyle challenges and risk factors. Patients featured in the videos are at different stages of their cancer treatment, and are dealing with a wide variety of concerns. Videos are developed around topics “ranging from emotional distress to care partner burden and burnout, and are designed to assist both patients and care partners in making psychosocial and mental health-related disclosures, ask for resources and assistance, and engage in problem solving and treatment decision making.” This intervention is especially designed to target vulnerable patient populations, specifically patients aged fifty or older who are African American or live in a zip code with a very high cancer mortality rate.
Dr. Dobs and Dr. Roter are leveraging the Johns Hopkins Clinical Research Network to involve patients and doctors from community hospitals located in the Mid-Atlantic region. Dr. Dobs, who also serves as director of the Johns Hopkins Clinical Research Network, underscored the importance of collaboration in designing this intervention: “We work closely with community hospitals because we know that most patients get their care from community hospitals in the U.S. So, whatever we do has to be applicable for that group of patients as well.”
The Alliance National Program Office reached out to Dr. Adrian Dobs and Dr. Debra Roter to discuss their work with the Alliance and learn more about the intervention.
Can you give us an update on what Johns Hopkins has been working on for the Alliance and discuss any progress on your interventions?
Dr. Adrian Dobs [AD]: We are trying to help improve access to cancer care across the continuum, starting when the patient is first getting a diagnosis of cancer, all the way to the end, when they are meeting with their primary care physician about long-term survivorship. The interventions at the very beginning have to do with obstacles that patients perceive when they first receive a cancer diagnosis and are trying to see a specialist that can help them. This [process] is frustrating for everyone, and it was particularly frustrating for vulnerable populations. We found that, often times, a patient would call and they would be told that they would have to get ten things together before they could even get an appointment. That would be extremely frustrating and difficult for anyone.
We are working through community health workers who can help vulnerable patients get all the things they need to make an appointment in a very expeditious way. There are many navigators working within the [Johns Hopkins] system, but this support is not available to patients that do not have a history number yet because they are not in the system. We already have a fairly extensive community engagement network through our cancer center staffed with experienced community health workers; part of their roles now is going to be to help the patients with a new diagnosis of cancer. We are working hard to go through the various steps that a patient has to go through and figuring out the best ways to identify the patient and to identify the various diseases that they have.
That is the beginning of the spectrum, and then the middle part, which you will be discussing with Doctor Roter, is the issue of communicating with the physician and health care provider.
Dr. Roter, why did you and Dr. Dobs choose to develop a communication skills training program? What need did you see?
Dr. Debra Roter [DR]: I believe that communication is the primary means through which the patient-clinician relationship is developed and expressed. This communication can be improved through the mastery of key skills that have the potential to enrich relationships, positively affect patients’ experience of care, and heighten clinical effectiveness. Communication is a highly reciprocal process, and patients as well as providers can benefit from training to positively influence the nature of medical interactions.
Since the earliest patient communication activation trial in the late 1970s demonstrated an increase in patients’ questions, over 30 communication interventions targeting patients have been conducted. These have been largely effective in helping patients be more proactive during medical visits by identifying, phrasing, and rehearsing questions. However, most interventions rarely go beyond question lists. As important as questions are, they represent only one of several skills that contribute to patient-centered communication, including exchange of relevant information, assessment and address of treatment challenges and obstacles, partnering in shared decision-making, and the establishment of emotional rapport.
I saw the need to instruct patients the same way clinicians receive patient-centered communication training.
What kind of interactions are you hoping that your training will spur, in terms of patient and provider communication?
DR: The communication skills intervention is not only directed toward patients and providers, but also towards family members or friends. There is some evidence that those who are sicker, older, less literate, less assertive are less inclined to engage in shared decision-making and are less likely to be engaged in the medical visit conversations. Fortunately, care partners, who can be prepared to actively facilitate communication, routinely accompany many of these patients to their medical visits. When care partners become more involved, patient satisfaction with the amount of information they receive from their doctor is higher , and patients report higher levels of interpersonal rapport. Overall, communication becomes more patient-centered.
AD: We want people to feel like their questions are being answered. It does not necessarily mean taking more time, it means allowing a specific question to be verbalized. The patients learn to be a little bit more direct, to ask questions such as: “What is the side effect of this drug?” as opposed to being vague, asking: “well, how am I going to feel afterwards?” Part of it is improving the way the patients ask the questions, and part of it is for the physicians to learn to understand some of the stresses that their patients are experiencing.
Are the training videos hosted on a website, are you creating an app, or pursing other methods of dissemination? What are the unique advantages of these methods compared to others?
DR: The videos will be hosted on a website that will allow free and open access. The obvious advantages of a web-based tool for the intervention is that, once developed, it will provide access anywhere, anytime. In addition, it gives us the ability to individually tailor content to learning styles and preferences of the users. However, we are somewhat concerned that the most vulnerable patients may not be comfortable accessing the website on their own. As a result, our current intervention design calls for research staff to facilitate the training, meaning they would be taking the patient (and a care partner if present) through the process of accessing the website. After completion of the intervention program, participants will be given printed instructions and a contact number for help accessing the website from home.
We are still in the process of building the website platform for the randomized trial of the intervention and we will investigate the possibility of adapting the platform to an app in the future.
How did you design this intervention for diverse patient populations?
DR: The patients and care partners are diverse in terms of cancer type, race, gender, and relationship to their care partners. In brief, the videos feature:
- Crystal Johnson, 70 years old, and her care partner Mattie, her daughter. Crystal is an African American breast cancer survivor who has undergone a mastectomy 3 years ago and is now cancer free;
- Lisa Evans, 55 years old, and her care partner Patty, her younger sister. Lisa is a white female with colon cancer treated with surgery one year ago;
- Paul Burns, 55 years old, and his care partner Elliot, his son. Paul is an African American man recently diagnosed with lung cancer and currently in treatment;
- Walter Kowalski, 60 years old, and his care partner Millie, his wife. Walter is a white man who recently completed treatment for prostate cancer.
The scenarios and characters were developed with input from researchers in the field and clinicians who run a survivorship clinic.
AD: We work closely with two Community Advisory Groups, one in Baltimore City and one in Prince George’s County, which is near Washington DC. We have been working with them for years, and we know some of the challenges that past patients have faced. We will be vetting the videos with them as well, and Debra has a date set to go to meet with them and gather feedback.
What feedback are you looking to receive and how will it affect the intervention going forward?
DR: We are anxious to receive feedback from our community partners in terms of perceived authenticity of the patient and care partner scenarios, making sure that the characters are realistic, resemble people they know, and that the problems and concerns they express are similar to those that actual patients have experienced. We will also be asking if the demonstrated skills are clear, helpful and likely to be useful, and if we missed important themes or issues that should be included.
How will you know how your patient population is responding or getting as much from your intervention as you would like?
DR: Patient and care partners will be recruited to the study before a scheduled medical visit and then randomly assigned to one of two groups: (1) exposure to the communication skills training program immediately prior to the scheduled visit; or (2) delayed exposure to the program after the scheduled visit. Evaluation of intervention effect will be based on group differences in patient and care partner report of program-targeted skill use and visit satisfaction immediately following the visit. A longer term assessment of the duration of intervention effects will be done by calling patients and care partners in both groups after their next scheduled visit to ask again about skill use and visit satisfaction.
We also plan to test a low-tech, low resource, passive dissemination alternative to the interactive computer platform over a period of several weeks. We will be showing video clips to patients and care partners in oncology waiting rooms on a delayed loop on a randomly drawn schedule. The video clips will introduce our four cancer patients and their care partners and show them demonstrating use of the targeted skills within simulated medical visits. At the same time, we will make available printed materials describing key communication skills and encouraging their use. On days in which the videos are shown, patients and their care partners will be asked if they watched the videos and read the printed materials while waiting for their visit and we will administer the same skill use and satisfaction questionnaire described earlier for the randomized trial following their visit. On days in which the videos are not shown, we will ask patients and care partners if they read the printed material on display in the waiting room and ask them to also complete the skill use and satisfaction questionnaires after their visit.
We hope to see that exposure to the videos will have a positive effect on reported skill use and satisfaction, even if the positive effects will be weaker than when patients will be using the interactive computer program. If we receive positive feedback, we will make the videos widely available throughout our network.
AD: We are doing some short-term evaluations, but the long-term issue is the whole treatment time of cancer. Patients will learn some of these skills in a primary care environment, and in that context, we will hopefully be able to look at compliance: let us say someone has cancer, and they are in the survivorship stage but they are supposed to have mammograms every two years, or something like that. We may be able to get some sense of are they really having the mammogram done, or do they need to have an extra scan done to look for bone density changes, because their treatment was associated with osteoporosis. I hope that we will be able to measure whether or not patients actually follow recommendations the way they are supposed to.
Adrian Sandra Dobs, MD, MHS, is Professor of Medicine and Oncology and Director of the Johns Hopkins Clinical Research Network of the Johns Hopkins Institute for Clinical and Translational Research. Dr Dobs received her undergraduate degree from Cornell University, a medical degree from Albany Medical College, in New York, and completed an internship in internal medicine at Montefiore Hospital, Albert Einstein College of Medicine, in the Bronx, New York. She held a fellowship in endocrinology from Johns Hopkins University School of Medicine and earned a master in health sciences degree at the Johns Hopkins University Bloomberg School of Public Health.
Dr Dobs is an investigator on several NIH-funded studies evaluating the relationship of sex hormones and chronic illnesses. She lectures in the United States and internationally in these areas, as well as aging and testosterone therapy.
Debra Roter is a Johns Hopkins University Distinguished Professor in the Department of Health, Behavior and Society at the Bloomberg School of Public Health with joint appointments in the Schools of Medicine and Nursing and the Sidney Kimmel Comprehensive Cancer Center.
Her research has focused on the study of patient-clinician communication and its consequences for the last 35 years addressing all aspects of the field including the design and evaluation of communication skill training interventions for patients, patient care partners, and clinicians. She is well known for a coding method for analysis of medical dialogue, the Roter Interaction Analysis System (RIAS). that has been translated into 15 languages and is the most commonly used system of its kind worldwide.
She has authored some 300 articles and several books in the area of medical communication.