Reflections on readings

As I began watching the you tube videos describing what is a MOOC (massive open online course), I became very excited with its potential as not only am I participating in such a course (eci831) but I will be able to connect and collaborate with others who share similar interests. I am excited to participate in a course and learn from the experts in the field as I am coming into this course with some basic knowledge of teaching and learning from a nursing perspective. As I further explored the use of a massive open online course, I began to consider how I could use this for patient education purposes. Then questions began to arise:

Would strangers with no other connection other than a medical diagnosis join a course that is open, participatory, distributed with a focus on developing connections?

What would be the ethical and legal implications considering the health information protection act?

Would such a course meet the needs of the patients and family members?

As I must ensure the patient’s privacy, it would be hard to encourage them to join a course with the focus on developing a networked community of learners with similar interests, but then isn’t that similar to the mandates of social support groups? To maintain privacy, everyone who registers could have an alias, but would this impact how they connect and collaborate on the site? In a network, the anonymous patient would still be able to post information, reflect on how the diagnosis has impacted their life and the life of their family. The anonymous patient would be to support other members of the community. As with any other group, there would still be members that would congregate together due to similar likes, experiences and interests. With many disease states, the condition does not discriminate according to age. Thus people of all ages could potentially join the course. Would such a course be able to respond to the needs of all patients with a variety of backgrounds and ages?

My thoughts also turn to the use of Twitter or Facebook for patient education. Would patients use Facebook to join a group discussing a specific disease state? Again this brings up issues related to privacy. I know that many patients, both young and old, are accessing the Internet to find out more about a medical condition, treatment or medication. Sites that they are accessing may not be trustworthy but they are still using the Internet and believing the information they read despite what a health professional may tell them. Would Twitter be more a more effective appraoch? A benefit includes connecting to a large number of people with the latest advances, current reports or websites linked for reference. You could post information on the site, people could ask questions but would you really develop that trust and relationship with the patient? As Michael Wesch stated

the medium shapes the message, the medium shapes the conversation, the medium shapes the possibilities for community, for identity construction and ultimately for self awareness

When I post something on the Internet, I do not know if anybody will read what I say, but in case somebody does read the post, will the use of social media negatively impact the nurse-patient relationship?

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5 thoughts on “Reflections on readings

  1. Interesting perspective on concerns about privacy. My Mom has just finished her chemotherapy cycles and I know would have participated in a group such as this. In addition to now battling cancer, she suffers from AMD and no longer drives. Living in a small town offers little for support groups. Providing opportunities for individuals to participate or not (or to participate using a pseudonym) may be helpful. She is on facebook and would likely join a facebook group related to her type of cancer as well as AMD! Her challenge is always finding the resources (that’s where we come in!).

    • I agree with what you have said- I think that is where technology can really shine by giving people an opportunity to participate in various learning opportunities whether they live urban or rural. If people are given the opportunity to chose whether or not they want to participate then it would be up to them to join with whatever name they chose….I think Facebook is a great option because of the social support which is needed. We all need to know that we are not the only one dealing with certain issues.

  2. Wow — lot’s of questions in this post. I’m not sure I have any answers but, as a pharmacist, I certainly understand your concerns surrounding privacy. Communities of networked patients is major movement in HC right now. I think the question you are asking is … where do we, as HCP, fit?

    This FB page by blogger Kelly Young (https://www.facebook.com/arthritiswarrior?sk=wall) .. certainly illustrates that patients (over 10,000 of them) are comfortable connecting in a community on that platform. But that’s a blogger facilitating a community — not a HCP. How our ethical restrictions and commitment to privacy standards would affect OUR ability to facilitate that group seems unclear. Are we responsible to make sure everyone joining the group understands their privacy settings on FB? I’m not sure … but as things move forward these are questions that need to be answered.

    In a more closed environment like Upopolis ( http://www.kidshealthlinks.org/ ) I assume that some of your questions around privacy would have been addressed. I’m not sure if there is HCP facilitators on the site (but hopefully there are) … might be worth checking out for best practices. Do patients use real names? is there a choice? what are their experiences with creating a network such as this? Has it proved useful?

    As far as SM impact on the patient-nurse relationship … I don’t think it is a negative … but it certainly is forcing things to evolve. e-Patients –Empowered, Engaged, Equipped, Enabled– http://e-patients.net like e-Patient Dave http://epatientdave.com/ are challenging notions around the privacy, sharing , and ownership of health information. They are asking to be full partners in their care. They are learning so much from each other and they want to share that knowledge with the Healthcare system. I think it’s important that HCP figure out a way to engage in these spaces with patients ethically and responsibly — there is so much to be gained. So glad you are asking the questions … and exploring the answers …

    Good luck in your inquiry

    Penny

  3. I am not really sure about the answers to your questions. For me some of the questions are the same when I think about using “new” technology in my class. The thought of having a facebook page for the class, class or student blogs or twitter accounts makes me wonder about the ethical and legal implications for me and my students. And, I also wonder about the profesional obligations that come along with social networking. This all seems so great and after having read most of the class blogs, I want to get going on some new ideas…but first I find myself sorting through all the “what if’s.”

  4. Pingback: Mental health promotion aided by social media? | heartsandminds

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