Wouldn’t it be great if older adults — and their families — could leverage the Internet, and perhaps some technology tools, to better manage their health and wellbeing?
This idea has been of interest to me ever since 2008, when I discovered the world of Internet health information and online communities.
[Brief bit of backstory: my long-standing interest is in improving the quality of primary care for older adults. When I discovered the potential of the Internet to educate, support, and connect people, I stopped studying quality measures and started working on e-health resources, mainly via writing geriatric health information for family caregivers and older adults.]
Last month I wrote a blog post for the HCLDR Tweetchat on this topic, and then was featured as the guest while the group addressed 3 topics:
- T1: What are the barriers to older adults and family caregivers adopting a more “e-patient” approach?
- T2: How can we foster more online communities where aging adults and/or family caregivers learn practical geriatrics?
- T3: What can we do to bring more attention to geriatric medicine / healthcare for older adults?
I posted the collection of tweeted responses a few weeks ago. In this post, I want to share a few particular insights and ideas that I gained from the tweets related to Topic 1.
What exactly do we mean when we say e-patient?
The first thing that struck me during the tweetchat was that the term e-patient is a bit broad and fuzzy to many. This meant that either people were unsure of what it meant, or people had varying definitions. Eventually someone posted a tweet to tackle this head-on:
“Does e-patient mean “engaged” or “electronic”? Help :-)”
“Seems the definition ofis varied, w/ many thinking it’s electronic, vs engaged. Let’s focus on tool independent def.”
“is an approach, a frame of mind not just the tech”
“For the 80-100 yo,start w/ letting the e stand for engaged, empowered.Don’t worry about electronic.1rst step-get buy in 4 process”
- Recognizing that one can and should prepare for encounters with the healthcare system. In other words, one should be proactive.
This is partly about understanding the imperfections and limitations of our current healthcare system. Mistakes happen, doctors are busy, primary care visits are short. It all should be different but until it is, one should be careful about blindly trusting the healthcare system to do the right thing.
But this mindset also stems from realizing that healthcare can and should be individualized, and tailored to one’s preferences and situation. Even in a much improved healthcare system with no errors or mishaps, we should be prepared to actively partner with our clinicians so that we can get the healthcare that is right for us.
- Using the Internet to seek additional information about one’s health, and the options for managing it. Once we realize that independent preparation for healthcare encounters is important, the Internet is the logical place to go looking for it.
On the Internet, we can find easy access to two core types of information. One type is health information provided by some kind of provider or publisher. The other is peer advice, often via interactive online communities. (We could also consider a third type, which is when healthcare professionals have interactive online encounters with patients/consumers, such as on social media or via something like HealthTap. But seems to me this isn’t widespread yet.)
Obviously, before the Internet it was possible to seek authoritative advice — at a medical library, for instance — along with peer advice, like in a support group. But the Internet makes it much easier to do this. That said, the downside is that it can be labor-intensive and even stressful to sift through the vast quantities of information available online, plus one now needs to have the ability to assess the quality and reliability of the information one finds.
In this framework, which draws on what I’ve learned from the Society for Participatory Medicine, one doesn’t particularly need an ability to use the latest new devices. However, being willing and able to find information on webpages, and perhaps to access community forums, would be important. Here’s my tweet on the topic:
issues aside, I think using approach is about attitude, resources, community. That’s where comes in
Barriers to older adults — and family caregivers — adopting a more “e-patient approach”
- Also, Older generation oft v respectful of doctors. Plus when feeling sick or impaired, harder to be proactive
- Privacy concerns are a barrier for many older patients. Identity theft &TMI situations are BIG concerns.
- Perhaps it’s as simple as educating people on what an really is. Not scary.
- Culture, beliefs, fear of the unfamiliar. As noted in her blog, not many online resources available for older adults
- A barrier to older empowered pts is a generational bias assumed by providers that pts want to be told not engaged.
- That’s a great point abt older adults being conditioned in their day not to question doctors or admit to being sick
- T1 some (not all) older people are less used to taking an active role in decision making. “I’ll leave it to you, doctor”
- If it’s difficult for pts in their 30s and 40s to be good older adults don’t have chance
- When someone is used to being ‘a certain kind of patient’ they may not even realize that increased participation is an option!
- Also we’re talking here about the age 80-100 yr old group,depression era adults:used 2 a more passive approach to their healthcare
- Part of the problem is ‘e-patients’ have their own jargon – it is also a new language to learn
- I believe the “tell me what to do” generation is on the way out Look at data on seniors surfing for answers.
- “at all ages only 20% to 40% want to be care partners – meet people where they are”
- Navigating information
- One barrier for older adults might be less ability to deal with firehose of information
- Accessibility of information and the tools to get that information is one big hurdle. Often, it’s too complex for .
- Not hard to be overwhelmed by the complexity of the medical issues,amount of information needed and burden of responsibility
- T1: Do you think there’s also a barrier of knowing what’s available through tech?
- Tech ability
- A major barrier is tech ability! Many older adults (& their boomer and/or early Gen X children) are just not savvy & need help
- Discomfort with technology. My in-laws are 78 and 87 and they really struggle.
- Common barrier is fear. Fear of using tech wrong, not remembering passwords, and more.
- I would have to say tech is barrier. Most older adults want to learn to use but no one willing to teach?
- Some people intimidated by & . But software gadgets with easy to use can make it easy.
- unfamiliar with tech, don’t realise now easy it is; require set-up and guidance
- Major challenge in adopting the geriatric population on my end is the technology-gap we hope to address that
- My in-laws have an iPhone and we show them how to use it every time we see them. Every time is like the first time.
- Communication can become more real time, however, the story may get lost in being 2D vs face 2 face
- often it seems we say the tech is too complicated for older adults; design tech *with* older adults so it is -centred
- though … All these ppl we say we can’t get on ePatient are on paperless billing, shop online, etc. We shd give them some credit.
- Limitations: Socioeconomic, physical, cognitive
- Also thinking that if vision is affected by age it will be more difficult for older people
- Accessibility of information and the tools to get that information is one big hurdle. Often, it’s too complex for .
- Another barrier is poverty. Poverty makes it difficult or impossible to engage e-patient resources let alone make cogent choices.
- Some don’t have access to or , but this group is shrinking. Need to tackle Digital Divide.
- Many minority patients are web users. This can prevent full optimization of groups & info.
- In the rural south, limited transportation options to access those places with public computers/Internet (e.g., library)
- lack of access, awareness, and personal touch may deter seniors from e-patient activities
- I think short term memory loss as we age needs to be considered a barrier as well.
- Also major issue b/c of passivity of health literacy~ at same time there is more complexity,much less foundation to deal with it
- Medical complexity
- Multiple medical issues raises a barrier for standardization (no one size fits all model)
- Yes re limited resources for this older old age group~VERY limited hands on,practical, patient oriented resources~more 4 60-70 yo
- Challenges for family caregivers
- Time, many caregivers today also manage chronic illnesses of their own theory applies
- Families might worry about having proper & helpful access to what patient is seeing/learning/doing.
- The Sandwich generation? Adults juggling parent care, career and their own children want someone to just make it simple?
- I find that many clients in my practice have children who take up the internet mantle for them
- Finally, regulations can introduce complications/fear into the process by which and may communicate.
- That’s where accounts enabling several users could really make a difference. Esp w/ family living in multiple cities.
The trouble with the terms “aging adults” & “e-patients”
The tweetchat left me thinking that it’s likely to remain very tricky to talk about “aging adults” (or “older adults”) and “e-patients,” because both those terms are so darn broad.
“Aging adults” is challenging because:
- Refers to a very wide age range. This can be people as young as their 50s (although often used for people aged 65 or older), and goes up to people in their 90s or even 100+ years. Within this group, there is a broad diversity of attitudes and illness burdens.
- Attitudes towards doctors, and towards their own healthcare is quite varied. This can be related to culture, other priorities in life, education, encouragement from healthcare providers, etc. This can also be influenced by illness burden & cognitive problems; people who feel unwell have less capacity to take on a participatory approach, whether than means asking a doctor extra questions versus learning to leverage a new technology.
- Comfort and aptitude with technology is quite varied. This can be influenced by all the factors noted above. Furthermore, it’s rapidly changing. (See Pew’s report on older adults and technology use.)
- The term is relatively new, and people think of different things when they hear it. Plus, the term e-patient remains unfamiliar to many within healthcare and among the public.
- The term e-patient makes it easy to conflate “an approach to one’s healthcare” with “use of a variety of tech tools.” Technology and e-tools should probably not be seen as a goal in of themselves, but rather as a tool to help people take certain actions. Just what those actions should entail is currently being debated, since healthcare is in the midst of a major overhaul of the doctor-patient-healthcare system relationship (see next item).
- How much participation to expect of patients — or even to allow them — is currently in flux within healthcare. Medicine has historically maintained control over things like health information, diagnostics, medical decision-making, and so forth. However, this is rapidly changing, and is being influenced by many factors (ethical imperatives, consumer demand, financial pressures to shift some healthcare responsibilities to patients, “disruptive innovation,” etc).
- Different people have different levels of interest and capability in taking a proactive and participatory approach. We need to keep in mind that many people may have difficulty adopting a more participatory mindset, or may struggle to access/use the related technology tools. Some of this might be preference — and we are supposed to try to meet patients where they are — and some of this will surely be due to lack of encouragement and training resources.