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Continuing our series on health literacy, this week we interview PLOS ONE Author Prof. Sandra van Dulmen, whose paper about patient communication in palliative care settings was featured in our research highlights on health literacy and cancer. Here she tells us about the importance of improving clinical awareness of limited health literacy, person-centered medicine, and her experience publishing with PLOS ONE.
Prof.dr. Sandra van Dulmen studied Psychology. She graduated in 1987 (cum laude) and obtained her PhD in 1996. Since 1995 she works at Nivel, the Netherlands Institute for Health Services Research, as leader of the research program Communication in Healthcare.
In 2012, she was appointed Professor in Communication in Healthcare at Radboud University Medical Center in Nijmegen, the Netherlands. During that same year, she also started working at the University of South-Eastern Norway, until 2020. In Norway, she was a member of the faculty responsible for training PhD students in conducting healthcare research in a person-centered way and co-edited a book on this topic which was published by Wiley Blackwell in 2017. Since 2022, she also works for the University of Borås in Sweden.
She has obtained lots of grants for research in the field of communication in e.g., primary care, oncology, pediatrics, and nephrology. Many of these projects apply tools to improve healthcare communication, shared decision-making and patient outcomes, such as self-management and medication adherence, and are carried out with patients as co-researchers. She coordinates a large archive with 18,000 video/audio-recordings of real-life medical consultations collected since 1975.
She has successfully supervised 29 PhD students and currently supervises 8 PhD students. She has published around 320 international papers in peer-reviewed journals and 75 papers in Dutch journals. Her current Hirsch index is 45 (Web of Science).
In 2022, she received the Paul Tournier award from the International College for Person Centered Medicine for her ‘outstanding contribution in the field of person centered medicine’.
Why have you chosen to focus on person-centered medicine in your health literacy work? How did it feel to receive the Paul Tournier award for your contributions to this field?
Healthcare cannot be effective nor sustainable without taking patients’ perspectives and needs into account. We often believe ourselves to act in the spirit of the patient, but many patients do not want a burdensome treatment just because this is available, or prefer to be seen and heard by their healthcare provider instead of being prescribed medication. Attending to the whole person with his medical history, psychosocial status, coping skills and preferences, enhances the level of person-centeredness and patients’ quality of life at the same time.
In my view, person-centeredness also demands attention for the person in the role of the healthcare provider and to look for ways to maintain a high enough level of job satisfaction, motivation and dedication. To this purpose, investments in time and resources are needed to allow for professional supervision, reflection and feedback not only on clinical but also on interpersonal and communication skills.
Having received the Paul Tournier award strengthens the need and relevance of my mission and assures me that I am on the right track with my projects.
An Open Access paper published in a broadly focused journal like PLOS ONE guarantees that the papers are available to a broad audience
Can you tell us about your recent PLOS ONE paper on communication and shared decision-making with patients with limited health literacy (LHL)? Do you feel clinicians and patients would benefit from increased awareness of LHL?
Health literacy, i.e., the skills to obtain and understand information about health and healthcare and to put this information into practice, is limited in one out of four Dutch citizens. Outside the Netherlands, it is even more prevalent. Limited health literacy is an important determinant for inequality in healthcare and is therefore gaining attention.
In our PLOS ONE paper, we wanted to gain insight into the views and opinions of healthcare providers about health literacy and shared decision-making in palliative care, and about their willingness to adjust their communication to patients’ needs and skills. Most healthcare providers we interviewed were not familiar with the concept of health literacy, felt more time is needed to communicate with patients with limited health literacy and reported that they lack supportive materials to explain medical information to patients. Based on the outcomes of this study, we developed and tested a blended training program for healthcare providers in hospital based palliative care to improve communication with patients with limited health literacy.
How can increasing understanding of LHL contribute to equity of health outcomes?
Again and again, studies indicate that people who live in deprived areas or have a lower level of education, i.e. a proxy for health literacy, have shorter healthy life expectancy. Healthcare providers have the medical knowledge to know what is best for these patients, but patients can still have different needs and perspectives. Even for patients with sufficient levels of health literacy who understand their health situation and are able to balance benefits and harms of therapeutic interventions, discussing one’s needs with a healthcare provider is no easy task. When persons lack these skills, this is even harder. They may take the healthcare provider’s viewpoint for granted or may be inclined to accept advice even though they cannot foresee the consequences. This may result in decisional regret, suboptimal medication adherence, inability to adopt a healthier lifestyle and disappointing health outcomes.
Much of your research involves patients with cancer. Are there any specific considerations for health literacy in cancer care? Are the considerations distinct for palliative vs curative care?
Many of my projects involve vulnerable patients and although the words ‘vulnerable’ and ‘patient’ might seem interchangeable, there are patients who are more vulnerable than others. This can be attributed to having a serious or life-threatening disease, like many types of cancers, but also to situational vulnerability like having a limited level of health literacy, emotional distress or comorbidities. I conduct research for and with patients with cancer but also with other vulnerabilities, such as women with an unwanted pregnancy who have to decide what to do, or young children with differences in sex development whose parents have to decide about genital surgery for their child. All these people struggle with decisional conflict.
Curative care differs from palliative care in which hope and decisional conflicts are no longer focused on cure. In interactions with palliative patients, therapeutic presence and compassion from every healthcare provider, become most important.
You’ve published a number of times with PLOS ONE. What do you see as the benefits of publishing with PLOS ONE and making your research Open Access?
Indeed, during the last 10 years, 8 of my papers have been published in PLOS ONE. The content of these papers varies from residents’ communication learning process to patient coaching, and from the effect of electronic monitoring feedback on medication adherence to communication and shared decision-making with patients with limited health literacy.
What these papers have in common is that all have the ultimate aim of improving the provider-patient communication in such a way that it contributes positively to outcomes considered important or relevant from the patient perspective, e.g. patient participation, information recall, medication adherence, shared decision-making, pain relief, quality of life and emotional wellbeing. Given this broad scope and relevance, an Open Access paper published in a broadly focused journal like PLOS ONE guarantees that the papers are available to a broad audience.
What is the most important take-home for clinicians to improve outcomes in patients with LHL?
Patients with a lower level of health literacy are often too embarrassed to be open about their lack of skills. Clinicians should therefore be attentive to signs which might point to lower health literacy such as not asking questions, suboptimal medication adherence and not filling out forms. Apart from that, at the end of each patient visit, it is advisable to check whether the patient has understood what has been discussed, not by giving patients the feeling that they are being tested for their understanding, but by using the teach back method, i.e. a way of checking understanding by asking patients to state in their own words what they need to know or do about their health. Not to test them, but to confirm that you have explained everything in a manner your patients understand.
Disclaimer: Views expressed by contributors are solely those of individual contributors, and not necessarily those of PLOS
Keep reading next week as Dr. Opeyemi Babatunde discusses how to apply health literacy principles in your research.