Journal of Participatory medicine Write Up:
01/12/2024, 11:05 am - cm: We are submitting an article to this indexed
journal 👇
With hua1 as first author and hua2, hua3, hua4, hua5, hua6, hua7 as co-authors and myself as the corresponding and last author.
Will share the first draft of my write up ASAP
01/12/2024, 8:09 pm - cm: First draft, pending thematic analysis and discussion 👇
02/12/2024, 10:20 am - cm: Similar public links often are displayed as social media ads that users may have often encountered:
One can also go to Facebook and type ketto to find 1000 such posts driven by patients and their family users of this social media driven fund sourcing platform where sharing personal details appear to be mandatory and you can find thousands of such patient trade offs to gather financial support and it may be actually quite difficult to trace the real outcomes of such trade offs in terms of the same patient's illness recovery outcomes although not impossible if one has the resources to take up such a project.
There are many instances of inappropriate patient data sharing in social media and this hints at a need to incorporate a special hands on training for health professional and patient users. In the conversational transcripts below an existent experiential training in the form of an elective program for both health professionals and patient advocates is highlighted with adequate links on the theory behind the endeavour as well as videos of hands on demos.👇
02/12/2024, 9:08 pm - cm: Other than the thematic analysis one of the thematic data we need to still capture and share here is the participants experiences of giving as well as taking consent.
Let's first ask ourselves about our own experiences and then try to collect more of these from our patients
Is it true that patients trade off their privacy by giving consent largely in the interests of their self preservation unlike doctors who may do it for self promotion?
03/12/2024, 4:30 pm - cm: Let's go through these and discuss how we are applying these in our participatory medicine data collection settings 👇
03/12/2024, 4:31 pm - cm: How many of our participatory medicine patients are aware of these rights?👇
05/12/2024, 9:53 am - cm: Thanks to the first author who has set the ball rolling for this study by sharing her own experiences in the format below. All our shared data here will come into the results section of our study and we shall only share the links in the results section and final thematic analysis insights there in the final draft of our write up. So best is if all of us share our own reflexive data illustrated below in our own portfolios and then share the link.
Reflecting on my experiences as a patient advocate and a physician, I’ve seen both the strengths and the shortcomings of participatory medicine in action. Each patient’s journey has been unique, with moments of progress and empowerment, but also instances of struggle, especially when navigating issues like privacy, confidentiality, and security.
The Good
One of the most rewarding aspects of participatory medicine is seeing patients and their families become actively involved in care. For example, in the case of the 65-year-old man with chronic vomiting, there was a clear effort to include the patient in discussions about his symptoms and potential diagnoses. This active participation helped foster trust and engagement, even though the diagnostic journey was long.
In chronic conditions like HFpEF and CKD, I’ve seen how educating patients about their disease helps them feel more in control. It’s encouraging to witness patients taking ownership of their health by asking questions and following through with treatment plans. Family involvement has also been a vital part of this process, especially for elderly patients who might struggle to advocate for themselves. In many cases, family members act as the patient’s voice, ensuring their needs are communicated and addressed.
The Bad
Despite these positives, there have been significant challenges. Communication barriers are a recurring issue. Many patients struggle to understand medical terminology, which limits their ability to make informed decisions. This can be frustrating for them and disheartening for us as healthcare providers when we see misunderstandings lead to non-compliance or missed opportunities for better outcomes.
Privacy and confidentiality remain delicate areas. In some cases, I’ve noticed that family members or caregivers unintentionally overstep boundaries, making decisions on behalf of the patient without fully consulting them. While their intentions are usually good, it raises ethical concerns about the patient’s autonomy.
Digital security is another growing concern. With more hospitals using electronic medical records, patients sometimes express unease about how their data is stored or shared. This unease is especially evident in complex cases involving multiple specialists, where coordination requires sharing sensitive information across departments.
For vulnerable populations—like elderly patients or those with cognitive impairments—these challenges are amplified. For example, in cases of dementia or altered sensorium, consent processes often become complicated, and ensuring the patient’s voice is heard can feel like an uphill battle.
Trust issues also arise when patients feel their concerns are dismissed or not taken seriously. In the blog case, the delayed diagnosis after months of chronic symptoms could understandably make a patient question the reliability of the healthcare system.
86M, HTN, DM, CVA, Orbital Cellulitis, Sepsis
• Good: The patient’s advocates had a clear understanding of his complex medical condition. This made it easier to communicate treatment plans and involve them in decision-making.
• Bad: Managing multifactorial conditions like his required a collaborative team effort. At times, gaps in coordination between specialties slowed progress, underscoring the need for better teamwork in such cases.
• Privacy and Confidentiality: The sharing of sensitive medical data between multiple teams highlighted the importance of maintaining strict privacy protocols. Fortunately, there were no breaches, but patients often expressed concerns about who could access their information.
65F, Sepsis
• Good: The patient’s attenders stayed committed to the care process, demonstrating complete trust in the team even during the most challenging times.
• Bad: Handling grief is a delicate aspect of participatory medicine. In this case, the attender’s devastation at losing their loved one led to a personal crisis, reminding us of the need for better emotional support systems.
• Privacy and Confidentiality: With emotional and ethical sensitivities involved, maintaining privacy was crucial. Sharing updates required consent at every step to avoid miscommunication or overstepping boundaries.
79M, Syncope, HTN, DM, CVA
• Good: The patient’s advocate played a crucial role in ensuring timely follow-ups and that his needs were consistently met while in the hospital.
• Bad: However, when left on his own, the patient struggled to manage his medications and care, leading to preventable hospitalization. This highlights the gap in support for patients who lack continuous advocacy.
• Privacy and Confidentiality: There were concerns about who would make decisions when the patient was alone, especially since he wasn’t always in a position to provide clear consent. Ensuring his voice was respected in such instances was a challenge.
35F, SLE, HF, CKD, HTN
• Good: Despite her critical condition, the patient remained resilient and hopeful, which was inspiring for everyone involved in her care.
• Bad: Financial instability was a significant barrier, as she couldn’t afford her medications or treatment. This ultimately led to her losing the fight for her life, a heartbreaking reminder of the inequities in access to care.
• Privacy and Confidentiality: Her financial struggles often required discussing sensitive details with external organizations for support. Ensuring her dignity and privacy in these conversations was a key concern.
05/12/2024, 10:00 am - cm: 👆 Requesting potential authors for this study to read the RESULTS section of our study, particularly the results of the global group discussions on "unscrupulous doctors sharing patient data in social media for self promotion" and "panicked patients sharing their data for self preservation" and see if they can fathom the problem statement of our study from the two discussions
05/12/2024, 10:02 am - cm: First author's reflexivity👇
05/12/2024, 12:23 pm - cm: Please do also take a look at what's reflexivity👇
07/12/2024, 9:16 am - cm: Potential authors,
Please share each of your experiential statements along with the case report link where this experience was actually documented and also encourage the other authors in your team to do the same.
Check out global authorship guidelines here: https://www.icmje.org/recommendations/browse/roles-and-responsibilities/defining-the-role-of-authors-and-contributors.html
Also check out one of the already shared participatory medicine participant experiences linked here 👇
10/12/2024, 9:51 pm - cm: "Reflexivity is the act of examining one's own assumption, belief, and judgement systems, and thinking carefully and critically about how these influence the research process. The practice of reflexivity confronts and questions who we are as researchers and how this guides our work. It is central in debates on objectivity, subjectivity, and the very foundations of social science research and generated knowledge. Incorporating reflexivity in the research process is traditionally recognized as one of the most notable differences between qualitative and quantitative methodologies. Qualitative research centres and celebrates the partici-pants' personal and unique lived experience. Therefore, qualitative researchers are readily encouraged to consider how their own unique positionalities inform the research process and this forms an important part of training within this paradigm. Quantitative methodologies in social and personality psychology, and more generally, on the other hand, have remained seemingly detached from this level of reflexivity and general reflective practice. In this commentary , we, three quantitative researchers who have grappled with the compatibility of reflexivity within our own research, argue that reflexivity has much to offer quantitative meth-odologists. The act of reflexivity prompts researchers to acknowledge and centre their own positionalities, encourages a more thoughtful engagement with every step."
11/12/2024, 7:11 am - cm: We now have two of our potential authors hua1 and hua7 sharing their experiences in their online learning portfolio and to stimulate the others here, I quote from what Narmeen has recently written below:
"experiences of participatory medicine across "Transnational Political Barriers":
This patient’s family member was initially afraid to engage because of the political tension between our borders. Their concern centered on whether exchanging information across borders was safe or not & even talking cross-border was threat to security or not.
Good:
Upon understanding the nature of the work, individuals expressed profound excitement and gratitude. For them, the realization that healthcare initiatives could transcend political boundaries brought a sense of connection enhancing the quality of care.
Demonstrating how healthcare can act as a bridge between communities, offering support amidst political tensions.
Challenges:
The initial hesitancy and fear from the family member due to political tensions highlighted the complexity of handling transnational political barriers in healthcare & fragility of trust-building in politically sensitive contexts.
13/12/2024, 4:28 pm - cm: A potentially interesting piece of qualitative research at least for those suffering from or caring for this
disease👇
16/12/2024, 8:47 pm - cm: Third potential author's experience 👇
03/12/2025, 10:00 am - cm: @hua1 can you make me the admin also here?
@hua6 can we prepare a ProJR from the content here titled the "participatory medicine ProJR'?
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