We are collaborating with Médecins Sans Frontières (MSF) to undertake a study that will evaluate the impact of a CARE tool on the health literacy, treatment adherence, empowerment and quality of life of refugee and asylum seeking patients with chronic and rehabilitative illness in Malaysia. The intervention and study was conducted at the MSF run clinics in Penang, Malaysia.

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What is the CARE Tool? 

 

The CARE Tool is handheld paper record/workbook developed by Diode that combines the traditional Health Passport with elements of a Person Centered Care Approach. The Tool helps patients have ownership of their medical information, encourages goal setting to monitor treatment progress with an interactive component for the patient and healthcare worker to work through the handbook during visits. The tool will be mostly visual, and where there is text, it will be in English.

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Why the CARE Tool? 

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We have found that NCD and rehabilitative programs and health clinics often face a few major challenges including: (1) patients not understanding the importance of adherence to medication and treatment (2) patients not understanding how to take their medication (3) general poor health literacy (4) being lost to follow up and (5) patients generally not being in charge of their own information (referral letters, reports) and therefore don’t seem to know what happens during referrals or follow up.

 

Personal healthcare tools, where the patient holds information regarding their illness and care plan (Kaelber et al., 2008), have helped address some of these problems. Only a small number of health passports however are accompanied with a Care Plan and goal setting function that will empower and give patients choice in their clinical care. A further smaller number involves a health care worker and the patient interacting to develop the goals and care plan (Godier-McBard & Fossey, 2018).  The CARE Tool therefore aims to be a mechanism that will not only help with better coordination of care at an operational level but also encourage self management and empower patients to take better care of themselves, which is in line with the Person Centered Care approach.

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What is the aim of this study and what will happen?

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The aim of the study is to test the effectiveness of the CARE tool, through implementation of the tool in primary care practice in the MSF Penang fixed and mobile clinics that see refugee and asylum seeking patients. Prior to implementation, the clinic staff will be trained on the tool, how it needs to be used and who are ideal candidates for its use. Patients that agree to participate will go through the exercise of filling in the tool and using the tool over a period of 9 months. We will continue to assess progress and impact through progressive quantitative and qualitative assessments throughout the 9 month period. Through this study we also hope to assess the feasibility, acceptance and perceived effectiveness of the CARE tool among healthcare workers and the patient population. 

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What happens if it is effective?

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If the CARE Tool is found to be effective, it can continue to be incorporated other fixed and mobile clinics with a similar patient population. The CARE Tool can also easily be adapted for use in other geographical and population contexts.

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              Sample pages from the CARE Tool book

 

 

 

How was data collected and analyzed?

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​A mixed-method design was used for this study, with the simultaneous collection of quantitative data using a provider administered survey from patient participants at three timepoints i.e., baseline (time 0), 6-months and 9-months along with a qualitative component via in-depth interviews with patient and healthcare worker participants. Data collection was conducted from June 2021 to April 2023. The majority of data was collected during the COVID-19 pandemic and its related lockdown measures. A total of 60 participants were initially recruited for the study:

• Quantitative measure - 57 participants completing the baseline measure, 54 participants completing the 6-months measure, and 50 participants completing the 9-month measure.

• Qualitative interviews - 22 patient participants completed the baseline interviews, 19 participants completed the 6-month interviews, and 17 participants completed the 9-month interviews. Eleven HCW were also interviewed for the study

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Participant dropouts were due to resettlement, return to country of origin, death, and persons who were uncontactable.

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The quantitative data from the four surveys across the study period was exported to SPSS. Descriptive statistics were used to analyze the data in SPSS and results presented in frequencies and percentages for participant characteristics. A linear mixed model regression was used to estimate mean and median changes in scores over time and in each of the four measures. Qualitative data from individual interviews were analyzed using Braun & Clarke’s (2006) thematic analysis approach. Specific sections of verbatim narrative were highlighted for inclusion in the final report to ensure participants’ voice was highlighted.  

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What are some Key Findings and Recommendations?

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1. Limitations: Findings from this mixed methods study are analyzed against a backdrop of limited use of the CARE Tool, limited HCW interaction and engagement of the CARE Tool with patient participants, and implementation during the COVID-19 pandemic and related restrictions.

2. Participants characteristics: More than half of the participants (66%) in this study are males, a median age of 45 years old, and 90% are ethnic Rohingya. Approximately 84% of participants are married and 52% are uneducated. Most (67%) of the participants have one or two chronic illnesses with hypertension and Type 2 Diabetes Mellitus being the most common conditions. 

3. Key barriers to accessing healthcare: lack of livelihoods and economic sustainability, transportation and distance to health facilities, language and literacy barriers, lack of family support and security, risk and fear of arrest.

4. Overall impact: Both quantitative and qualitative findings suggest limited measurable improvements in health literacy, treatment adherence, empowerment, and quality of life.

5. Positive changes: Some significant gains were observed (e.g., psychological domain of quality of life), but these were not consistently sustained throughout the study period, and attribution to the CARE Tool remains uncertain.

6. Patient perspectives: Patients generally found the tool helpful when used, though engagement and utilization during the study were low.

7. Role in reducing barriers: Where applied, the CARE Tool supported reduction of language barriers. Lack of broader impact may reflect systemic and persistent challenges that influence patient outcomes beyond this intervention. 

8. Importance of HCW engagement: Feedback from both patients and HCWs underscores that active HCW engagement is critical for the success and sustainability of tools like the CARE Tool.

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This study is significant as it is the first to evaluate the impact of a PCC intervention in the MSF Penang Project. However, the CARE Tool was found to have no positive and sustained impact on health literacy, empowerment, treatment adherence or quality of life. Many reasons contributed to this, including the COVID-19 pandemic, the change in priorities of care in the clinic and limited engagement of HCW. While this study suggests that the CARE tool, in its current form, is ineffective in improving health outcomes for this population, it remains unclear whether this tool is inherently ineffective or if its lack of success is specific to the current context.

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Prior to further roll-out of the CARE Tool and based on the findings above, several key recommendations are made:

• Develop a common understanding of the expectations and purpose of the CARE Tool

• Increase HCW engagement and understanding through capacity development

• Develop and incorporate a more community-centered approach

• Address structural barriers to engagement

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Current Project Status

A dissemination activity and sharing of findings was completed at the MSF Penang Project in September 2025. Discussions are being held on further evaluation and roll out of the tool 

 

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The study has received ethical approval from the MSF ERB Ethics Review Research on 16 February 2021 and local ethics approval from the University Malaya Research Ethics Consultative Service on 17 November 2020.

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