Brief Biography of José Bernardo (J.B.) Negrón

I was born and raised in Puerto Rico (a colony of the United States in the Caribbean). However, I currently reside in Barcelona, Spain. I have over 10 years of experience in clinical and social research. My expertise lies in applying qualitative research methods to understand and improve the patient experience. Nevertheless, my interest in rheumatic and musculoskeletal diseases (RMDs) began as I completed my bachelor’s degree and clinical training with a clinical psychologist in Puerto Rico. I started noticing that many patients mentioned a disease called fibromyalgia as the cause of their daily struggles. At that moment, I had no idea what this disease was, so I began to look for information about it because I perceived that the psychologists lacked the right tools to manage these cases. These events led me to Spain, where I pursued postgraduate studies in Health Psychology at the Universidad Autónoma de Madrid, focusing on RMDs. After completing my master’s degree, I began working as a researcher with Dr. Loreto Carmona at a health research consultancy in Madrid, specializing in RMDs (2015-2019). The experience gained during that time provided me with the opportunity to become a fellow at: 

• The European Alliance of Associations for Rheumatology (EULAR) Outcomes Measures Library 
• EULAR – Task Force on Adherence in people with RMDs
• Outcomes Measures in Rheumatology (OMERACT) – Patient Outcomes in Longitudinal Studies in Rheumatoid Arthritis (RA) Working Group 

Furthermore, between 2016 and 2018, I was part of the board of directors of OpenReuma (secretary), which is the association of Healthcare Professionals in Rheumatology representing Spain in EULAR.

Finally, I started doctoral studies in Epidemiology and Public Health and with the onset of the pandemic I worked for the Department of Health in Puerto Rico on the coordination and management of COVID-19 contact tracing programs. Recently, I have been more focused in public health research (while not forgetting RMDs) and to the study of sex and sexuality in RMDs with the foundation of Reumasutra, the kamasutra for people with RMDs (fieldwork presented at EULAR 2020: https://ard.bmj.com/content/79/Suppl_1/191.2) which aim is to provide data-driven, fun, and dynamic sex education. We hope to launch Reumasutra later this year.

On the RA remission study

The idea originated at the health research consultancy (HRC) I worked for (back in 2016) were aware of the lack of consensus in accepting a unique definition, resulting in various remission criteria coexisting, and wanted to explore this issue. The HRC sought methodological advisory to transform their idea into a research project. The HRC was responsible for structuring the entire methodological design. However, my role was limited to data collection, data analysis, interpreting the results, writing the first manuscript draft, incorporating changes, writing the final version, and handling reviewers’ comments/revisions in the publication process.

In summary the project was designed as a qualitative research project. Focus groups were used as method of data collection. Four focus groups were conducted divided as follows: one with people with RA and three with rheumatologists (each group was composed of rheumatologists with extensive clinical experience with different profiles; one group of experts in basic research, one group of experts in imaging techniques, and one group with experts in clinical research). 

After an initial overview of the data collected, we noticed that there was a lot of information, and it would be better if we divide it into two different publications using different methods of data analysis. A first manuscript comparing the perspectives between rheumatologists and patients (method of data analysis: qualitative content analysis) and a second one comparing the perspectives among rheumatologists with different profiles (method of data analysis: thematic analysis). Despite both works having been published I want to highlight the first, because it has an original recommendation of a new approach that could help in the task of defining remission in RA.

 Before explaining this recommendation in detail, I would like to emphasize that the key takeaways/messages of the study were: (1) rheumatologists and patients did not see remission in RA from the same perspective, (2) symptomatology is the most relevant aspect of the disease for patients, in contrast for rheumatologists the most important aspect is the availability of objective instruments to quantify the disease, and our recommendation (3) a group of rheumatologists with RA should be responsible for defining remission and remission criteria. 

The last takeaway, which is also our recommendation, deserves to be explained in detail and within its context. This recommendation was generated by the overall result (a lack of consensus in a remission definition) and the previous literature review. Reviewing the literature, I learned two things. The first one was the suggestion of two sources of disease knowledge: technical knowledge and experiential knowledge. In the health context, technical knowledge is attributed to the physicians and will depend on the quantity and quality of the technical resources they learn overtime. 

Technical resources can be formative years, clinical experience, continuing education programs, etc. Instead, experiential knowledge is attributed to patients and will depend on the quantity and quality of experiential resources they acquired over time, such as coping, social support network, learning by trial and error, etc. This framework explains why rheumatologists and patients may value different things of the same concept. The second thing was that all the studies aimed to define remission in RA used consensus methods in which different actors (people involved in the healthcare process) such as rheumatologists, nurses, researchers, people with RA, among others, were included. 

However, the amount of people with RA in those studies were substantially lower than the number of other actors. This finding surprised me as it seemed curious that the participation of people with RA was consistently unbalanced. This raised doubts for me about whether the perspective of people with RA was truly being heard and taken into consideration when placed in the same space as other actors who surpassed them in quantity and hierarchy of power in the healthcare context.

 The context of these studies, with this imbalance, are really a safe space for people with the disease to express themselves openly? Are we including people with the disease because we genuinely care, or is it just tokenism? Several years later, by getting involved in European and international research groups, I was able to take a closer look at this issue, to which I will dedicate a section at the end of this writing. However, returning to the research, these findings and critical questions that arose from the literature review process, along with the results of the research led us to wonder: to have consensus for a definition of remission, to which knowledge we must attribute greater importance, technical or experiential? This leads us to make a recommendation to the international community for the creation of a new consensus for the development of a new definition of remission in RA.

Perhaps we have been trying to define remission incorrectly. If we agree that there are two sources of disease knowledge, the solution cannot come from basing the definition on the opinion of two groups of people who have different knowledge; instead, we should find people in whom both sources of knowledge coexist. Rheumatologists and patients, have a partial view and probably a blind spot in remission, in relation to the type of knowledge they possess. According to our proposal, remission criteria and its definition need to be established by a group of rheumatologists living with the disease, as they represent the balance between technical and experiential knowledge. This will let us enjoy a complete view of the RA.

It has been seven years since the manuscript was published, and although I acknowledge that our recommendation may not be a definitive solution, it is an alternative to achieve different results that could be closer to reality. Despite this, our recommendation has not been adopted, and defining remission in RA feels like trying to decipher the exit of a labyrinth by taking the same path over and over again. This work is important for all the actors involved (people with RA, scientists, clinicians, among others) in the healthcare process for three reasons:

• First, it identifies a possible methodological problem in the way remission has been attempted to be defined. 
• Second, it is critical of the inequality/imbalance in power among the actors involved in this process and how this inequality may be affecting the results.
• Finally, it offers a possible solution to end this power imbalance. 

I would like to see a study in which our recommendation is adopted. However, for this to happen, a critical research group is necessary, one that acknowledges the power imbalance in the way remission has been attempted to be defined so far. Finally, I would like to add that following the publication of the study I refer to, I have observed how experiential knowledge is often underestimated in comparison to technical knowledge. 

There still exists a numerical imbalance in many research studies among patients, rheumatologists, and other healthcare professionals. This often leads to the impostor syndrome in patients, where they hesitate to express themselves freely due to fear of being silenced by an authority with technical knowledge. This power imbalance is even reflected in the structure of some organizations in which patient figures, rheumatologists, and other healthcare professionals coexist. Despite having diversity, only rheumatologists can aspire to the presidency of these organizations.

Fortunately, this is gradually changing thanks to patient associations. I think we are (all the actors) actively engaging in an exercise of trying to be aware of tokenism. Patient associations and the use of social media are the best tools to continue educating and counteracting these power structures that are often unquestioned. 

*Nowadays, rheumatologists can choose among any of the following remission criteria:

1. Disease Activity Score 28 (DAS28) <2.6
2. Simplified Disease Activity Index (SDAI) ≤3.3 
3. Clinical Disease Activity Index (CDAI) ≤2.8
4. American College of Rheumatology (ACR) / EULAR Boolean (28 tender joint count, 28 swollen joint count, patient’s global assessment [0–10 scale], CRP [mg/dL], all  ≤ 1) 
5. Disease-modifying anti-rheumatic drug (DMARD)-free sustained remission; defined as the absence of sustained synovitis after cessation of DMARD therapy
6. Musculoskeletal ultrasound remission 

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The #TalkOverRA campaign is all about empowering folks with #RheumatoidArthritis to take charge of their health. It encourages everyone to open up about their RA journey, collaborate with doctors to manage symptoms, and smash those treatment goals. Download the Talk Over RA discussion guide to help aid you in speaking to your healthcare team about remission with rheumatoid arthritis