A Closer Look at Health Information Seeking by Older Adults and Involved Family and Friends: Design Considerations for Health Information Technologies

Abstract

Older adults are the largest consumers of healthcare. As part of a broader study of personal health information management (PHIM), we interviewed older adults in King County, Washington, and their involved family and friends (FF), regarding health information (HI) sources they seek and utilize. Analysis of interview transcripts revealed four main themes: 1) older adults and FF consider healthcare providers the foundational source of HI; 2) older adults utilize FF for seeking, sharing, and interpreting HI, while FF serve as surrogate seekers and experience-based experts; 3) online searching is common for older adults and FF, but confidence in assessing the quality of online HI is often lacking; 4) a smorgasbord approach is frequently utilized by older adults and FF for gathering and clarifying HI. Design considerations include: facilitating access to quality provider-vetted HI, incorporating older adults and FF in the design process, and creating shared spaces for communication of HI among older adults, FF, and providers.

Introduction

We are an aging nation. In 2015, adults 65 years of age and older comprised 14.9 % of the U.S. population, and that number is growing¹. Older adults are the most frequent utilizers of healthcare services and have the highest number of clinic visits and hospitalizations of any age group. As a result, older adults and their supportive FF increasingly need to understand and manage complex health conditions and associated health information (HI).

A previous survey of older adults indicated that older adults’ preferred sources of HI are health providers, pharmacists, friends and relatives, retirement community staff, newspapers, the internet, television, and radio². An increasing amount of HI is now available on the internet and internet usage by older adults 65 years and older increased from 14% in 2000 to 67% in 2016³. However, usage is not equivalent to ease of use and comfort with the internet. Accessing digital HI can be a challenge for many older adults in the midst of the cognitive, physical, and social changes that come with aging and which in turn may affect seeking, comprehension, and storage of HI. Additionally, we know little about the role of FF in supporting the HI seeking process of older adults.

We investigated the HI resources sought by and provided to both older adults and their FF. This research is part of the SOARING Project⁴, an in-depth exploratory user-centered study of personal health information management (PHIM) in older adults and their caregivers. PHIM is defined as “the activity involving the integration of personal, professional, and health-related information, which helps people manage their lives and actively participate in their own health care”⁵. The HI seeking behaviors of older adults (75 years and older) living in retirement communities and their family members have been previously reported⁶. However, the dynamic nature of information seeking by older adults in different living situations (i.e., independent residences, shared dwellings, retirement communities, assisted living facilities) and the related HI seeking of FF in support of older adults has not been fully explored.

We report here on the types of HI sources and information seeking practices used by older adults and the FF that support them. FF are key stakeholders in the management of older adults’ health care services and health information, and are often the users of health information technology (HIT) designed for older adults. However, little is known about their health information seeking practices related to older adults. We include FF in this study to fill this gap and inform supportive tools. Based on our findings, we offer design considerations for HIT systems to assist older adults and their FF in managing their health and HI.

Methods

We collected data from older adults and FF they identified as involved in their health and health information management. We describe the process of data collection and analysis below. The University of Washington IRB approved all study materials and procedures.

Data collection

We collected data from older adults aged 60 years and older through in-depth interviews over a two-year period (2014-2015). Although the designation of older adults in the US is often considered 65 years and older, others define older persons as those aged 60 years or over⁷. To understand a breadth of experience across diverse living situations, we sought to include input from adults who were currently in the workforce, soon to be retired or recently retired, and would be 65 years of age by the completion of the study. We recruited participants through flyers posted in community organizations (e.g. senior centers, YMCA) and by reaching out to staff members at retirement communities and assisted living facilities. We used purposive sampling to ensure diverse representation of gender, living situation, race, and income. Inclusion criteria for study participation were age 60 or over, ability to communicate in English, reside in King County, Washington, and lack of cognitive impairment (as determined by a score of 4 or higher on the Six-Item-Screener)⁸.

Older adult interviews:

In-depth interviews lasted between 90-120 minutes and when possible, took place in the participant’s residence. When this was not possible, we conducted the interview in a common room of the participant’s building or at a local community organization. The first part of the interview was structured and included demographic questions and a series of validated instruments⁹. The second part of the interview included semi-structured questions about the participant’s management of HI, focusing on information related to their health, the HI sources that best meet their needs, and where they seek HI. In addition, we asked participants to identify persons involved in their health and PHIM. With permission of the older adult, we took photos of artifacts (e.g. blood pressure logs, file systems) representative of PHIM materials, tools, or strategies within their living space. Interviews were transcribed by a professional transcription service and uploaded to the online qualitative analysis system, Dedoose¹⁰.

FF interviews:

We contacted individuals identified by older adults who helped them with their health and PHIM. After obtaining verbal consent, we performed 30 to 60-minute telephone interviews with participating FF. Interviews focused on access to and involvement with the older adult’s HI and health related activities. Interviews were recorded, transcribed, and uploaded to Dedoose¹⁰.

Data Analysis

Older adults:

Three team members (KO, AT, JJ) reviewed a subset of transcripts and developed a codebook for the older adult interviews. Two team members (KO, JJ) applied the codes to all transcripts. To ensure consistency in application of the codes, team members double-coded 10% of the transcripts and met on a weekly basis to discuss any discrepancies and reach consensus. We achieved inter-coder agreement of 90% across the double-coded transcripts. All photos were uploaded to a photo library after identifying information was removed. Two team members (KO, JL) developed and applied a coding schema to the 857 images. To identify older adult sources of HI we reviewed in-depth interview transcript excerpts and photos.

FF:

Three team members (AT, JT, KO) read through a subset of transcripts independently and met weekly to reach consensus about a coding schema. One team member (JT) then coded the transcripts applying the coding schema and a second researcher (KO) reviewed the coding. The two researchers met to reconcile differences in code application and reached consensus before coding continued.

Older adult and FF transcript excerpts were analyzed using thematic analysis to identify themes related to HI seeking ^11,12.

Results

We conducted a total of 88 in-person interviews with older adults and 52 telephone interviews with FF. Older adult participants had an average age of 77.5 years (sd 10.3), were predominantly female (69%), white (72%) and had at least a bachelor’s degree (61%). Older adult participants resided in diverse living situations: independent residences (25%), independent-shared dwellings (27%), retirement communities (27%), assisted living facilities (19%), and homeless (2%). Seventy percent of older adult participants lived alone. A majority of older adults (89%) reported having access to a computer where they lived and 83% reported having internet access where they lived.

FF had an average age of 67.4 years (sd 11.2), and were predominantly female (77%), white (87%) and had at least a bachelor’s degree (73%). Seventy-seven percent of FF reported using the internet on a daily basis.

In the following sections, we first compare HI sources for older adults and FF, including people, print, and digital sources. We then describe four emerging themes around HI seeking for older adults and FF: (1) the healthcare provider - foundational source of HI, (2) family and friends - both seekers of HI and experience based “experts”, (3) surfing the internet - where to look, what to trust, and (4) the smorgasbord approach - a combination of sources to obtain HI.

Health Information Sources

Older adults reported using a variety of HI sources, and most commonly mentioned seeking HI from their healthcare providers, the internet, and FF. For FF, the initial source of HI was the older adult, which often prompted the FF to do further seeking. Table 1 compares HI sources for older adults and FF.

Table 1.

Health information sources

Health Information Source	# Older Adults utilizing (n=88, %)	# Family and Friends utilizing (n=52, %)
Providers (e.g., doctor, nurse, social worker)	75 (85%)	20 (38% )
Internet (independent use)	43 (49%)	28 (54%)
Family and Friends	48 (55%)	7 (13%)1
Pamphlets/newsletters	17 (19%)	0
Newspaper/magazine	12 (14%)	2 (4%)
Books	12 (14%)	1 (2%)
Other (e.g., listening to body, radio ads, community organizations)	18 (20%)	4 (8%)

¹Refers to family and friends communicating with other family and friends

Six older adults mentioned that although they did not search on the internet themselves, they asked a FF to search on their behalf. A few older adults who sought HI online emphasized the importance of being able to print that information and have it in a physical format. Table 2 compares specific websites mentioned by older adults and FF as online sources.

Table 2.

Online health information sources for those who sought health information online.

Online Health Information Sources	# Older Adults (n=43, %)	# Family and Friends (n=28, %)
Google or unspecified search engine	16 (37%)	17 (61%)
MyGroupHealth patient portal	3 (7%)	1 (4%)
Social media	2 (5%)	0
Websites
WebMD	9 (21%)	8 (29%)
Mayo Clinic	7 (16%)	9 (32%)
Other Academic / Hospital website(s)	5 (12%)	8 (29%)
Gov’t health organization website(s)	3 (7%)	1 (4%)
Medline plus	2 (5%)	0
Nonprofit national association websites (e.g. AARP)	3 (7%)	1 (4%)

Participants often placed mentioned sources of HI, such as newsletters, pamphlets, newspapers, and magazines, in visible locations in their homes for easy access (see Figure 1).

Figure 1.

Health related newspaper clippings on the refrigerator for easy access (P8), and piles of health-related information, most of which has been received in the mail (P23).

Health Information Seeking Themes

Analysis of transcripts from both older adult participants and FF participants yielded four themes related to seeking HI which are organized in Table 3 by source and type of participant. We describe each theme with supporting quotes.

Table 3.

Health information seeking themes for older adults and their family and friends

Source	Older Adults	Family and Friends (FF)
1. Healthcare Providers	Older adults considered healthcare providers their first choice for obtaining HI.	Many FF engaged in communication with health care providers to clarify and obtain additional HI.
2. Family and Friends (FF)	Older adults frequently chose to involve FF with their HI seeking.	FF often sought input from other FF regarding HI.
	Older adults often used peers to “compare notes” about HI.	FF served as sounding boards for each other in thinking through HI for the older adult.
3. Internet	Older adults often used the internet to supplement information that they received from other sources.	Despite viewing providers as the foundational source of HI, when seeking HI for the older adult, FF utilized the internet more than any other source.
	Older adults frequently performed general internet searches for HI but expressed concerns about their ability to assess the reliability or trustworthiness of the HI found.	FF had varying levels of confidence about how to search for and assess the accuracy of HI sources.
4. Multiple Sources	Older adults rarely sought HI from a single source, but used a combination of sources.	FF used a combination of sources for HI.
		While communication with older adults was often the starting point for FF in HI seeking, FF often sought other sources for confirmation or expansion of their knowledge.

Theme 1: The healthcare provider - foundational source of HI

Older Adults

Older adults frequently mentioned healthcare providers as their first and best source for HI. Trust, knowledge, and the importance of connection and dialogue were the main factors associated with the prioritization of healthcare providers over other HI sources when older adults were asked where they obtained HI:

Trust: “I guess mostly what I can get personally from my healthcare providers. Because I trust them, I feel trusting of the information that they’re giving me.” (P84)

Knowledge: “Why do I feel like I get the best information from my doctor? Because he has the most knowledge.” (P7)

Connection and dialogue: “It’s just, you know, I want to talk to a face of somebody I know.” (P12)

Additionally, some older adults made comparisons between healthcare providers and the internet as sources of HI, indicating preference for providers over the internet:

“See, that’s the kind of thing I would never go on the internet to see what they had to say. I go to a doctor I respect and know.” (P12)

Family and Friends

FF also described providers as a foundational source for HI related to the older adult. Lack of trust in the reliability of information provided by the older adult was a key factor for FF in seeking information from medical professionals. Family members in particular often helped with medical appointments in order to access more comprehensive and reliable information, both for themselves and for the older adult. This included helping the older adult prepare questions for the provider, being a second set of ears in appointments, and facilitating communication between the older adult and provider.

“I’m just there to listen to what doctor said, because sometimes if I didn’t go with him, sometimes if I ask him when he comes home, he’s forgotten what they told him.” (FF30, wife)

Theme 2: Family and friends - both seekers of HI and experience based “experts”

FF serve in supporting roles for both older adults and for other FF, through searching to find HI, providing their experience, and listening and talking over health concerns.

Older Adults

Some older adults asked FF to find HI on their behalf. In addition, older adults frequently asked FF to suggest HI sources, and to help them make sense of HI:

“I talked to [son], and I said, “Can you check out this doctor online, and can you also check out the condition and see if you can find anything I haven’t found?” (P40)

Older adults also often considered their peers uniquely capable of providing HI, based on their similar health conditions and diagnoses, and turned to peers for provider recommendations, possible diagnoses based on symptom comparison, and to discuss medication side effects:

“And, other seniors, right, because they’ve all had various... knee replacements, hip replacements, back problems, lung problems. You just - it’s good to compare notes.” (P90)

Several older adults mentioned that they placed a higher priority on HI from FF who were also healthcare professionals.

“I called up my girlfriend in Illinois. She used to be a nurse, and she checked out Sjogren’s for me and a friend of mine checked it up, and I guess it is not very nice. It attacks the tissues and the organs.” (P50)

At the same time, a few older adults stated explicitly that they would not use FF as sources of health information:

“Not health, no. What do they know ? They’re as ignorant as I am. They depend on their doctors.” (P32)

Family and Friends

FF frequently searched for health information for older adults.

“...I researched the drug that they wanted to put her on. And I helped her make up a list of questions that she wanted to ask when she went to her next appointment.” (FF14, daughter)

FF often consulted with other FF to obtain and share information regarding the older adult’s health.

“Well, partially just other friends. So ... if they were experiencing something similar [they] would say, ‘Oh, you know, this worked for me,’ and then I would look that up and then share that with [subject] .” (FF45, friend)

Theme 3: Surfing the internet - where to look, what to trust

Many of the older adults and FF used the internet to find HI related to the older adult’s health (Table 2). Although FF considered HI from providers as foundational, they most frequently sought HI on the internet. While some participants were able to name specific websites where they found reliable HI, many older adults and FF relied on general search engine results and expressed concerns about their ability to assess the quality of online information.

Older Adults

Multiple older adults expressed concern about the reliability and trustworthiness of online HI because of contradictory information among websites and unknown authorship:

“I don’t like a lot of the stuff on the internet because I don’t know where it came from. I don’t know whose ideas they are. I don’t know how valid it is or accurate and some of it is pretty horrific.” (P9)

Family and Friends

FF often searched for or gathered HI from the internet to help answer questions for older adults and themselves. Although some listed reputable websites that they trusted, others did not have a standard method to assess trustworthiness or accuracy of the HI obtained.

“I don’t think about it being trustworthy I guess. I just see what the options are and just pick something that looks like it might be helpful. “ (FF40, daughter)

Theme 4: The smorgasbord approach - a combination of sources to obtain HI

Most older adults and FF utilized multiple sources for HI in their attempt to expand and confirm their knowledge and understanding, and to assess reliability and accuracy of HI.

Older Adults

Older adults described consulting a variety of sources when they sought HI about a specific topic. Frequently mentioned combinations of sources were provider, internet, family, and peers. Participants often described the order in which they sought HI from multiple sources, but the order was not consistent across participants:

“I pull it up on the computer. And then I’ll discuss it with a girlfriend. And they’ll tell me what the doctor told them or whatever….And then when I go to the doctor I’ll ask them about it or tell them about it when I go.” (P4)

Family and Friends

FF also described consulting a variety of sources, and often started with the older adult as a source.

“I have taken the information she’s [the older adult] given me and consulted with research on the internet and consulted with some friends and family who are medically savvy. “ (FF1, daughter-in-law)

In the few instances in which older adults sought HI from a single source, the single source was generally a healthcare provider. Most FF who cited a single source relied exclusively on the older adult for HI.

Discussion

Our findings about HI sources and seeking strategies of older adults and their FF reveal important insights and carry implications for design of HIT used by older adults and their FF. Table 4 presents design considerations with specific examples for informaticists and HIT developers based on the HI sources and seeking strategies of older adults and their FF.

Table 4.

Health information seeking findings and implications for HIT.

Themes	Design Considerations HIT should:
1.The healthcare provider - foundational source for health information	• Facilitate access to and communication with health providers and older adults (and not inhibit this connection) (e.g. consider email or video-link or instant messaging features when appropriate, to connect to providers)
	• Facilitate connections for FF with providers (e.g. provide older adult-controlled FF access to providers)
	• Involve providers in the process of selecting and recommending HI for older adults and consider how this HI could be a shared encounter (e.g., engage geriatric and gerontological professional organizations and consumer groups in establishing formal processes for endorsement or assessment of HI resources)
2. Family and friends - seekers of information and experience based “experts”	• Incorporate FF in design of future HIT so that their surrogate HI seeking is optimized and more beneficial to older adults
	• Allow permission capability for involved FF to access HI on the older adult’s PHIM system (e.g., provide a feature that enables users to control data sharing features and amount of information that is shared with users or user groups)
3. Surfing the internet - where to look, what to trust	• Provide access to consistent, reliable, and accurate HI resources
	• Provide training opportunities for older adults and FF to locate and assess the reliability or validity of online HI
	• Streamline navigational features of websites using established plain language13 and usability principles to ensure guidance and assistance during the online search (e.g., embed navigational structures that provide flexibility for those with varying degrees of functional or cognitive limitations)
4. The smorgasbord approach - a combination of sources to obtain health information	• Design patient facing dashboards which provide older adults and FF with access to multiple types of sources of HI including: providers, text materials, and FF
	• Design tools that allow older adults and FF to compare, synthesize, and summarize information from multiple sources

Our findings support and extend previous research on older adults’ use of HI and provide additional insights on the role of FF in HI seeking. For example, our finding that older adults prefer to seek HI from healthcare providers is consistent with results from previous studies^2,6,14-18. This preference has been consistent for over 20 years, despite the tendency for individuals to have decreasing face time with providers during clinical visits. The preference for providers as a source of HI was linked to issues of trust, and the belief that providers have more reliable and accurate knowledge than other HI sources. These findings indicate the need to design systems that facilitate interaction between providers and older adults, taking into consideration the importance of trust, knowledge, and human connection that providers bring. The greater availability of online consumer HI and the growing use of the internet by older adults² has not translated into increased trust of information found on the internet. However, by some reports this may be changing, some older adults report preferring the internet to health professionals as a source of HI¹⁹. The observation that FF seek HI from medical providers to validate or augment information they receive from older adults also supports previous findings in a study limited to elders (75+) living in senior housing⁶.

Older adults consider FF as important sources of HI, as persons with both personal and professional experience, and as those who will help seek HI⁶, ²⁰, ²¹. Peers in particular often served as a sounding board for comparing HI, based on similar experiences. Many of the FF reported that they played the role of a surrogate seeker for the older adult in looking on the internet. Interestingly, only six (7%) of our older adult participants volunteered that they asked FF to search on their behalf, because they would not or could not do it on their own, while 28 (54%) of the FF reported searching the internet for HI related to the older adult. FF also took on a variety of surrogacy roles in the context of medical visits. FF were generally dependent on information from the older adult to initiate surrogate seeking, but if needed FF sought HI during medical visits, and often supported the older adult in providing, listening to, and interpreting HI. The needs of FF in this supportive role to the older adult are complex and important to consider in HIT design. Providing opportunities for older adults to communicate with trusted networks of FF regarding HI is another design consideration.

Half of the older adults in our study reported independently seeking HI on the internet, primarily to supplement other HI resources rather than as a primary resource. Many older adults and FF turned to the internet to gain a deeper understanding of issues raised by the older adult’s provider. This finding is consistent with findings from Flynn, who found that older adults frequently search the internet for HI after, rather than before, visits to their providers²².

Concern about the quality of HI on the internet and how to discern accuracy continues to be a challenge for older adults^23,24, although for over a decade high quality consumer HI has been available online through a variety of sources such as the Centers for Disease Control and Prevention, the National Library of Medicine (e.g., Medline- Plus.gov), the Mayo Clinic, and the Cleveland Clinics (e.g., Cleveland Clinic Health Library: https//myclevelandclinic.org/health)^25-28 While many older adults and FF described seeking HI from such trusted sites, many others searched more generally and expressed confusion from reviewing contradictory information from online resources. Some older adults were unsure of their own ability to search the internet and relied heavily on FF to search for them. However, FF expressed varying levels of confidence in their abilities to search the internet effectively.

Training is needed on strategies for successfully searching the internet, and tools for identifying reliable online resources with quality consumer HI. The Institute on Aging provides useful tips and a checklist for evaluating health websites²⁹, and online training is being developed³⁰. But given the importance of face-to-face communication expressed by our participants, in-person training may be more effective for some older adults, such as that offered through the NIH Senior Health Toolkit for Trainers³¹. All such training must be sensitive to the particular needs of older adults including potential physical and cognitive deficits^32,33. Although several lists of quality health websites for seniors are available online³⁴, health organizations and providers should take advantage of the trust placed in them, and consider providing lists of recommended websites to older adults for accessing accurate and quality HI.

Most older adult participants sought HI from multiple sources such as providers, the internet, and FF. Seeking information from multiple sources allowed them to corroborate what information they had found on the internet, compare information with peers, or to gain a deeper understanding of health concerns brought up by their provider. FF also often used multiple information sources, including the older adult, the older adult’s medical providers, the internet, and their social network. To our knowledge, the complementary and intersecting information seeking behavior of older adults and their FF, involving triangulating HI through multiple sources, is not previously documented in the literature and warrants further investigation.

Although we confirmed continuing challenges that older adults have in seeking quality health information, many of our older adults described effective strategies for seeking health information. Seeking information through multiple sources and with the help of others allowed older adults and FF to obtain health information they needed and trusted. However, there were issues with reliability and trust in relation to the internet (for both the older adult and FF), and with the older adult (for FF). As FF stepped into surrogacy roles they sometimes encountered difficulty obtaining accurate clinical information, which they usually dealt with by accompanying older adults to medical appointments. Most FF did not access the older adult’s patient portal (or personal health record) for information. We must balance a movement toward providing tools for FF to effectively access health information for supporting the older adult, with the older adult’s right to privacy and autonomy. Designers of HIT must consider how to facilitate access to needed HI for supportive FF in the context of necessary privacy safeguards.

Strengths and Limitations:

Our in-depth qualitative study design and the large sample of participants enabled collection of rich description of health information seeking behavior of older adults and their FF, which adds to our existing knowledge by providing a deeper understanding of sources utilized and the involvement of FF in health information seeking activities. However, the results discussed here were generated from a sample of 88 older adults living in King County, WA, and 52 of their FF, and may not be generalizable to larger populations or other geographic locations. While the researchers used purposive sampling to ensure a diversity of living situations, our participants were largely higher educated and white. Our results come from the analysis of qualitative interviews and although the researchers made every effort to minimize potential bias in their interpretation, their experience and background influenced their interpretation of the data.

Future research:

Future research should include working closely with older adults and their FF as they seek HI resources and involve older adults as well as FF in the design and usability testing of HIT. In particular, a better understanding of the successful strategies employed by older adults and their FF to find and discern quality health information could help us in modelling new systems that support searching activities. Innovative methods for enhancing the connections between older adults, FF and trusted yet busy healthcare providers will be important for supporting older adult PHIM.

Conclusion

Older adults and their involved FF have a significant need for HI and employ a variety of information seeking practices to ensure they have quality health information available. As HIT becomes increasingly integrated into our lives, design approaches that take into consideration the unique and diverse HI needs and preferences of older adults, their friends, and their family members, will help ensure that aging older adults remain engaged and knowledgeable about their health.