Read Full Text: eHealth, participatory medicine, and ethical care: A focus group study of patients’ and health care providers’ use of health-related internet information
Journal: Journal of Medical Internet Research
Year Published: 2015
Ranked 72nd on our 2015-2020 list of the 100 most influential OT-related articles
CEU Podcast: OT, eHealth, and Participatory Medicine with Lauren Sheehan
In this time of upheaval, OT professionals are navigating an ever-changing maze of legislation, reimbursement, and care-delivery models.
But, this week’s article calls us to refocus on our profession’s most important relationship of all: our relationship with our clients.
This week’s research pushes us to think through our partnerships with our clients. And, it calls us to think about these relationships in terms we might not be accustomed to, such as trust and vulnerability.
This article was published in 2015, as more and more patients were beginning to access health-related information online. This change in patients’ behavior began to shift the traditional relationships they held with providers.
The findings from the article feel even more relevant recently, as concerns about the coronavirus have led many people to research health-related information every day, almost as a ritual. We can only imagine how this practice is going to change healthcare.
Luckily, the article provides insight into focusing on a new set of values, which can help guide us through this time—and, ideally, continue to do so in the future.
A brief orientation to eHealth and participatory medicine.
Some of the terms used in the title of this article initially felt new to me. But, I promise they are concepts you’ll recognize.
Let’s start with “eHealth”…
eHealth is a very broad concept that is used to describe the use of information and communication technologies in health and health-related fields. The term “eHealth” could refer to anything from practicing telehealth to Googling diagnoses.
This paper focuses on a specific subset of eHealth, which is accessing “health related internet information.” In other words, this article focuses on patients and healthcare providers turning to the internet for health information.
Here’s how eHealth has sped the creation of “participatory medicine”…
The internet has basically created a huge shared resource for both patients and providers. And, we have quickly come to take this wealth of information for granted.
However—and this is huge—you have to remember that the ability of patients to participate in their care (“participatory medicine”), on some level, upends centuries of medical research and practice.
Here’s how all of this is shifting what ethical care looks like—including the values that will help us navigate this new era…
We healthcare professionals have had to adapt and evolve over time. In fact, even the values and ethics of healthcare itself are changing—but, we’ve been slow to articulate these changes.
When we think of ethics, we often think of Hippocrates and the old set of values like “do no harm.”
But, this old set of ethics was best suited for a bygone era of medicine, where passive patients looked to providers to “do something” to “fix” them.
Now, with participatory medicine, our care is much more complex and relationship-based—and our values and ethics will need to shift to reflect that.
Which leads us to this paper…
What was the main research question?
The researchers used a focus group to explore how “health related internet information” influenced the relationship between patient and healthcare provider.
They were specifically looking at any challenges that have been created—as well as any values that have helped when navigating such challenges.
Who participated in the focus group?
The focus group consisted of 14 healthcare providers (including occupational therapists!) and 18 patients. All of the patients self-reported a diagnosis of arthritis and at least one other health condition.
What was the structure of the focus group?
The participants were divided into 7 small groups, which met for around 2 hours, and participated in a guided discussion. The main framework of discussion was based around these questions:
- What types of eHealth and devices do you use?
- What sort of things do you use eHealth for?
- How does eHealth influence what you do regarding your health condition (patients) or practice (providers), including your interactions with patients/providers?
- What do you see as the benefits and drawbacks of eHealth?
The sessions were transcribed. The researchers also searched for emerging themes, then went back and coded the transcriptions according to these themes.
What were the results?
Both patients and providers found that health-related internet information prompted more “interactive and negotiated communication.” This contrasted the older model of healthcare, where providers bestowed knowledge on passive patients.
But, this new model was creating new tensions, which the researchers coded according to these themes:
- Changing Roles
Patients were feeling the need to prepare more to have productive visits; this preparation helped them better understand their situations and determine which questions to ask during appointments. Preparation enabled patients to use visits for more active discussions. This felt like an overall shift in responsibility, meaning the patients bore more responsibility for actively managing their own care.
- Partnerships
Healthy patient/provider relationships felt more like partnerships, where trust emerged as a key value—particularly the vulnerability to share what they do not know (the providers) and what wasn’t working for them (patients).
- Tensions and Burdens
The amount of information out there is so massive, both patients and providers felt the burden of sifting through it and verifying it.
What the authors concluded/discussed
There is no doubt the patient/provider relationship is changing. And, the authors contend that a “relational ethic” offers a framework and values to help navigate this complexity.
That sounds complicated. Yet, the values that make up this relational ethic are familiar to all of us.
These values include:
- Trust
- Mutuality
- Responsibility
- Honesty
- Vulnerability
These values help us build relationships of mutual respect and reciprocity that involve:
- Sharing knowledge
- Providing support
- Recognizing vulnerabilities
All of this leads us to the ultimate goal of shared decision-making and patient-centered care.
Takeaways for OT practitioners
(These are my personal takeaways, and were not mentioned in the article.)
1. OTs are perfectly positioned to be these much-needed relationship-focused healthcare providers.
As I typed those values above, I kept thinking about how OTs already embody these values. Our profession attracts emotionally intelligent practitioners. And, the research seems to tell us, again and again, how necessary these skills are in healthcare today.
2.) This article prompted me to shift my thinking from “How can we survive?” to “How can we strengthen our relationships with our clients?”
Our patients are feeling overwhelmed and uncertain right now. (Just like many of us are.) This is a unique time to focus on strengthening your relationships with patients and leaning into these important values: trust, mutuality, vulnerability, honesty, and responsibility.
Yes, right now we need to continue to advocate—and, in many cases, rework our business models. But, at the heart of all of that advocacy should be these strong relationships with our patients.
Earn one hour of continuing education by listening to the podcast on this article!!
In this podcast episode, we dive even deeper into this topic, with rehab technology expert (and Club member!), Lauren Sheehan. You may be eligible for continuing education credit for listening to this podcast. Please read our course page for more details!
