We conducted 12 focus groups comprising 83 participants, seven with non-US-born and five with US-born older Chinese adults. Groups were in Mandarin (n = 6 with non-US-born participants) and English (n = 5 US-born and n = 1 non-US-born) (Fig. 1). Participants had a mean age of 74 years (SD = 5.9), took a mean of 6.1 (SD = 1.5) prescription medications, and 43 (51.8%) were female (Table 2). Thirty-seven percent were born in the US, 36% in China, 13% in Taiwan, and the rest in other Asian countries (see Appendix 1 and 2 for additional details).

Figure 1

Twelve focus groups comprising 83 participants, seven with non-US-born and five with US-born older Chinese adults. Groups were in Mandarin and English.

Table 2 Participant Characteristics

US-born participants were younger than non-US-born participants (mean age 72.6 (SD = 4.4) versus 74.9 years (SD = 6.5)), attained a higher level of education (83.9% versus 42.3%, respectively, had at least a Bachelor's degree), and had greater clinical trial participation (16.1% versus 3.8%). US-born participants reported fewer medical conditions than non-US-born participants (mean 3.6 (SD = 1.6) versus 4.4 (SD = 1.2)) but reported more prescription medications (mean 6.5 (SD = 1.9) versus 5.8 (SD = 1.1)). Almost all participants had previously heard the term “clinical trial.”

Comparisons of the US- and non-US-born focus groups demonstrated that US-born participants expressed greater knowledge and willingness to join clinical trials. The groups otherwise mostly touched on similar themes, with some differences noted below. All groups attributed low clinical trial enrollment to non-US-born Chinese people with more limited health literacy and primarily referenced barriers and facilitators relating to that group. Major themes related to attitudes and beliefs around clinical trial participation are described below and in Table 3. As applicable, Table 3 also provides examples of subthemes.

Table 3 Major Themes and Example QuotesLack of Awareness/Exposure to Clinical Trials

Participants mostly attributed underrepresentation of Chinese people in clinical trials to poor awareness of opportunities for participation. One participant observed: “…not a lot of the Asian community is really aware of [clinical trials]…I’ll be 76, we didn’t really have an awareness that clinical trials exist…it’s a communication gap” (Female1/FG9/US-born). As another participant remarked, Chinese people do not oppose participation: “It’s that we are not given access to, not that we refuse to join” (Male1/FG5/translated from Mandarin). Similarly, another noted: “I’ve never been invited for a clinical trial. I don’t know anyone in my group has been invited” (Male7/FG1/translated).

Participants in several groups remarked that community-based physicians, particularly those in primarily Chinese communities, may lack knowledge about clinical trials, as exemplified in one exchange:

Male4: If you go to your primary doctor in Chinatown, they probably don’t even know about clinical trials.

Male7: That’s right. If your physician is not part of a university hospital…you will never be offered clinical trials. (FG10/US-born)

Heterogeneous Views on Clinical Trial Participation Based on Generation, Country of Origin

Several focus groups discussed differences among Chinese subgroups. One proclaimed that: “We want to be seen as individuals as opposed to a giant group of ‘all Chinese people would think to do this or feel this way’” (Female5/FG8/US-born). Another participant supported this perspective:

I think it is a generational thing–you’d have to target each Chinese American that you’re talking about before you just lump them into one… you can’t just do a very stereotypical, “Chinese Americans don’t do this because--” I think that would not be appropriate. (Female4/FG12/US-born)

A common sentiment was that US-born Chinese people (and those who immigrated early in life) are more open to clinical trial participation. Commenting about younger generations, a first-generation participant observed:

They are more willing to [participate]. We can see that the young generation born here thinks differently from us, the older immigrants. (Female1/FG4/translated)

Another speculated that both generation and country of origin are influential:

I think there’s various different subgroups among the older Chinese, and I’m guessing that American-born Chinese, they’d probably have a higher participation rate than immigrant Chinese…There’s also a difference between the various subgroups [of Chinese people]. Like the mainland Chinese used to come recently. Actually some of them are well-off and their level of knowledge and trust is the same as an American-born. (Male2/FG8/US-born)

Preference for Natural/Traditional Medicine

A common theme was a preference for natural (traditional) treatments. Participants voiced that first-generation Chinese people may mistrust Western medicine, and consequently decline participation in a trial of medications. As one participant articulated:

Chinese people believe that our traditional Chinese medicine is more reliable, whereas Western medicines are all made of chemicals…for a long time, we have been so used to believing that Chinese medicines are safer while Western medicines are made of chemicals, like those made in laboratories, so that makes us more frightened…We all have this kind of belief. (Female1/FG4/translated)

Others echoed these thoughts, for example: “…my Mom didn’t believe in western medicines that much because she said that they’re too strong, they make you sick” (Female6/FG12/US-born).

Risk Aversion and Safety Concerns

Participants in all groups feared being a “guinea pig” or a “lab rat.” Some Mandarin-speaking participants commented about lacking “courage” to face potential clinical trial risks. As discussed in one focus group:

Female2: [Chinese people] tend to be more cautious and don’t want to take risks…

Male4: Because life is so precious to them. They traveled tens of thousands of miles to the United States.

Female1: Chinese people have suffered too much.

Female2: They are more cautious.

Male4: So they cherish the chance of living here, and being more cautious. This is where the Chinese are different from [Westerners]. (FG1/translated)

Risk aversion was discussed in several focus groups, and as one participant commented: “…a lot of Chinese people–my parents are from China, and they’re very averse to risk…they don’t want to take that risk” (Male1/FG10/US-born).

All groups had concerns about trial medication, adverse outcomes, and drug interactions. As one participant conveyed: “…I will not participate in clinical trial if the new drug interferes with the efficacy of the drugs I’m taking now” (Male1/FG6/translated). Some US-born participants worried about the consequences of being randomized to the placebo arm of a clinical trial.

Desire for Privacy

Privacy was mentioned by US-born participants, who asserted that they were raised to keep to themselves, for example:

My parents were immigrants, Chinese immigrants…I know that growing up, they really instilled on us…don’t get involved, and don’t give out any information you don’t need to. (Female2/FG8/US-born)

Participants hypothesized that this desire for privacy may deter Chinese people from disclosing their health conditions and participating in clinical trials. As one participant shared:

Your own body is your own body and it’s sacred, so you don’t want to share with the world what’s going on, and you’re taught to be a little bit more private. You just don’t have these open discussions as to your ailments, especially if it’s not comfortable to talk about…You don’t share with your best friend, so why would you share with a stranger? (Female4/FG11/US-born)

Inconvenience/Physical Limitations Can Preclude Participation

Other barriers to participation included physical limitations such as mobility and urinary incontinence. Time constraints were mentioned by those who were still working, and distance/travel time was a consideration for some. Inconvenience was a concern, for example:

…you also have to think about if the trial is going to affect your life, or any possible restrictions on your diet or on your activities during the trial…It would be inconvenient if there are a lot of changes. (Female1/FG2/translated)

Motivators Included Getting Treatment as a Last Resort or for Perceived Personal or Cultural Relevance

Participants in all groups remarked that they would consider clinical trial participation if they exhausted other treatment options, or as multiple Mandarin-speaking participants mentioned, “treating a dead horse as if it were alive,” an expression denoting making every possible effort in a hopeless situation. Others would consider participating for a personal condition, for example: “I’ve been a diabetes patient…anything they can improve the diabetes situation, I will be more than happy to participate” (Male3/FG7/non-US-born/English). Some were willing to participate if a trial studied diseases common in Asians, for example:

…for a serious disease like malaria that has an impact on Asian populations…for several other infectious diseases that affect people in Asia…I might be more willing to volunteer. (Male5/FG10/US-born)

One participant speculated: “Maybe stressing that it would help other Chinese as well, that–not very many Chinese enter clinical studies and how important it is for other Chinese” (Female3/FG11/US-born) would increase participation.

Incentives Are Important

When asked directly, participants conveyed that incentives were mostly unimportant. Yet they felt parking and gas should be covered, and some assumed transportation would be provided. One group joked that the greater the incentives, the greater the participation. A minority discussed receiving a trial medication at free or reduced cost: “Let’s say, there’s a new drug for cancer, but it costs $100 a day. If a new trial can bring the cost down, I would be willing to give it a try” (Male2/FG6/translated).

Major Recommendations for Promoting Clinical Trial Participation

Both US- and non-US-born participants wanted to hear about clinical trials from other Asians. One US-born participant remarked:

It gave me more confidence that there was an Asian involved [in this study] versus a person of another ethnicity. It makes it more comfortable. I’ve always felt perhaps more comfortable among Asians if they’re going to be getting very personal. Certainly, I looked at the names of the people involved in [this] study and I was more amenable to participating when I saw Asian names. (Male1/FG11/US-born)

Others lamented the lack of information in Chinese and discussed the need for both language-concordant and culturally sensitive materials, because direct translation may result in unintended meanings. Others voiced the importance of forming: “a bridge between the Western medicine and Chinese medicine and a bridge between the generations” (Female3/FG12/US-born).

Multiple participants stated that their physician’s recommendation could prompt participation. Other trusted voices included hospitals/academic health centers and Asian/Chinese healthcare organizations. Participants felt that community/senior centers were a good venue for obtaining information, and often mentioned group presentations, newspaper, television, and advertising (Appendix Table 3).

Non-US-born groups with less English proficiency valued support from their adult children, while few US-born participants mentioned their adult children. US-born groups brainstormed more strategies for outreach than non-US-born groups, though their suggestions primarily focused on recruitment of non-US-born older adults.