“If it helps someone,then I want to do it”: Perspectives of persons living with dementia on research registry participation

Abstract

Registries are an important platform to which persons with dementia and other cognitive impairments can contribute to research studies. Registries also provide an opportunity for patients to stay informed about current studies. Engaging patients in registry development can increase sustainability of a registry and patient retention in clinical registries. We sought the perspective of persons with dementia and their accompanying family members about their registry participation experiences, barriers and facilitators to participation, and potential avenues for improvement of registry processes such as recruitment, data collection, and knowledge translation. Two semi-structured focus groups with persons with dementia and their family members (n = 18) were conducted and analyzed using thematic content analysis. Participants were recruited from an existing patient registry made up of patients currently being seen in a dementia assessment clinic. The main themes identified included altruistic motives with regards to registry participation; and access to and privacy of personal health information. As electronic health records are becoming more common, understanding barriers and facilitators from the perspectives of people with dementia is essential to inform the future development of cognitive condition-related registries. The results from our focus groups identified engagement strategies and solutions to overcome perceived barriers for individuals experiencing progressive cognitive decline to participate in longitudinal registry projects.

Keywords

dementia personhood patient registry focus group qualitative

Introduction

Clinical patient registries can be an important tool in advancing knowledge of dementia and other cognitive conditions, through both prospective observational and clinical data collection and as a platform to find potential eligible participants for future research studies (Jette, Johnston, Pringsheim, & Korngut, 2013). Registries are also a non-invasive and low-burden way in which persons with dementia can participate directly to research through contribution of health-related clinical information, including patient reported outcome measures.

However, the voice of persons with dementia in research in the past was often marginalized in favor of the voice of their family or other care partner, under the assumption that persons with dementia cannot meaningfully reflect on their experiences, or contribute their voice to research. These assumptions lead to the loss of personhood and sense of self, as well as the underrepresentation of persons with dementia in the published literature (Downs, 1997). Additionally, some persons with dementia were excluded from research participation because of methodological challenges associated with the inclusion of people living with cognitive conditions, which can include more complex consent and assent processes and challenges specially around communication (Moore & Hollett, 2003).

Despite these challenges, a dementia diagnosis and associated cognitive impairment does not mean that people living with dementia cannot, or should not, participate in registry-based, or other, research (Moore & Hollett, 2003; Wilkinson, 2002). More currently, there is a shift with emphasis on maintaining the personhood of people with dementia as a clinical and research priority (Kitwood, 1997; O'Connor et al., 2007). A study examining the willingness of persons with dementia to participate in research over time showed that willingness to participate in research was high, and remained stable for most participants over time (Lingler, Rubin, & Saxton, 2010). In a public forum including persons with dementia and their caregivers, over half of attendees believed their research data should be shared, especially with researchers studying Alzheimer’s disease (AD) (Robillard & Feng, 2017).

Previous studies have investigated commonly cited reasons for research participation from the perspectives of persons with dementia and their care partners. These included hope for improvement or finding a cure, contributing to medical research, improving the lives of others, and a care partner’s feeling of obligation to the person with dementia (Elad et al., 2000; Karlawish, Casarett, Klocinski, & Sankar, 2001; Mastwyk, Macfarlane, LoGiudice, & Sullivan, 2003). Law, Russ, and Connelly (2013) divided reasons for persons with dementia participating in research into individualistic (having a say, developing a sense of control), collectivistic (fostering a community, sharing goals), and mobilization (desire for change and improvement), and suggested that some of these reasons are motivated by anger and a feeling of deprivation due to limited drug treatment research.

Motivations specific to participation in clinical registries for persons with dementia have previously been investigated via questionnaires, with the primary reasons for registry participation identified by these studies being altruism and societal benefit (Avent et al., 2013; Jefferson et al., 2011). The ability to stay informed about new and upcoming research opportunities, having access to reliable information, and contributing to the development of a “big picture” understanding of their condition via research was considered to be valuable for persons with cognitive impairment and other neurological diagnoses (Korngut et al., 2013). The first-person voice of people living with dementia, however, is often excluded in research design and implementation, and representation of their views registry participation is lacking in the current evidence base. Including the voice of people living with dementia and cognitive impairment through focus groups adds an important dimension to our understanding of the important issues around registry participation for this population.

Including the voice of participants in health research ensures that their perspectives are represented and research is relevant to the people it affects most. This has been represented in the literature as “nothing about us without us”, a philosophy originating from the disability rights movement, encouraging the inclusion of persons with lived experience at the center of the processes and decisions that will impact them (Charlton, 1998; Paul, 2016). This approach in health care provision and health care research has been gathering pace in recent years in multiple research areas and care sectors, and is fact named as part of Alberta Health Services’ strategy to promote health equity (National Collaborating Centre for Determinants of Health, 2013). Moreover, previous research has demonstrated that including persons with dementia as active collaborators in research is important in maintaining personhood and ensuring their perspectives are considered (Cotrell & Schulz, 1993; Wilkinson, 2002).

Two key issues in the development and maintenance of registries are sustainability and retention of patients. Direct engagement of patients in registry research can increase enrollment, improve retention rates and registry sustainability, as well as help identify effective research dissemination strategies (Domecq et al., 2014; Fellows, Stark, Berg, & Chatterjee, 2008; Schwamm, Reeves, & Frankel, 2006). Registry stakeholders, notably patients and care partners, can also aid in the early identification of potential problems with registry methodology, the development of standard operating procedures, and they can also help improve clinical registry processes (Fellows et al., 2008). The goal of this study was to engage and seek the perspectives of individuals experiencing dementia or cognitive decline regarding barriers and facilitators of participation in long-term data collection and registry projects.

Methods

Participants & recruitment

Patients were recruited for the focus groups from the Prospective Registry of Persons with Memory Symptoms (PROMPT) Registry in Calgary, a city of approximately 1.2 million people located in the province of Alberta in western Canada. Alberta has a coordinated system of universal healthcare and the dementia assessment clinic is the only clinic of its type in the Calgary Zone. Potential participants were eligible to take part in the focus groups if they met the following inclusion criteria: (1) current enrollment in the PROMPT registry, (2) they had provided consent to be contacted for research studies, (3) the ability to provide informed consent (based on the researcher’s subjective assessment and conversation with the person with cognitive impairment via telephone), (4) the ability to read and speak English (based on registry information and telephone conversation), (5) they were over the age of 18 years old, and (6) they were a resident of the local area in order to attend the focus group. In order to enroll in the PROMPT registry, patients must have been referred to the dementia assessment clinic for evaluation of memory symptoms and have provided informed consent themselves, or by their legally appointed agent where appropriate. The registry excludes patients with secondary causes of cognitive impairment other than vascular disease or neurodegenerative condition (e.g. excluded conditions include: brain trauma, mood disorder, alcoholism), an inability and/or unwillingness to complete neuropsychological testing, those unlikely to complete study follow up due to limited life expectancy, and those resident in a long-term care facility.

Purposive sampling was used to ensure that a variety of perspectives were represented in the focus groups. When eligible participants were contacted via the phone number provided in the PROMPT registry, we sought to have approximately equal representation of male and female participants in our focus groups, as well as representation from different levels of education, age, and ethnicities. Persons living with dementia and a family member (as identified by the participant) were invited to attend and participate in a 1- to 2-hour focus group. This broad definition of family was used to be as inclusive as possible and we use the terms family member and care partner interchangeably throughout the manuscript regardless of their relationship.

Data collection

Three of the authors facilitated the focus groups (RC, TP, and PR). After written informed consent was provided by all participants, focus groups were audio recorded and detailed notes were taken. A semi-structured guide, presented in Table 1, was developed according to available evidence with regards to patient registries and also through expert consultation, and was used to direct the discussion. The guide included questions about previous experiences with registry participation, perceived barriers and facilitators to registry participation, and how to improve registry recruitment and participation processes. Focus groups were approximately 1.5 hours in length, recordings were then transcribed verbatim and anonymized by researchers present during the discussions (PR and TP). The quotes presented in this manuscript were only edited for readability.

Data analysis

A thematic content analysis was conducted using NVivo 11. Descriptive codes were generated from the data throughout an iterative analysis process. Coding was conducted independently by two researchers with qualitative expertise for each transcript and researchers used memos to log their thoughts throughout the analysis. Themes and subthemes were created from the descriptive codes independently by each researcher in the first instance. The authors met regularly throughout the analysis period to discuss any disagreement, construct definitions for each code, and consolidate the analysis.

Results

Sampling

Fourteen individuals from the cognitive clinic registry and four family members were interviewed across two focus groups in order to understand the barriers and facilitators of registry participation. At the time of the focus groups, participants had a variety of diagnoses, thus we obtained perspectives from people with different types of cognitive impairment and varying levels of experience with registry participation. Although family members were invited to accompany participants in the focus groups, our emphasis in this study was to understand the registry experience from the point of view of individuals with dementia. We encouraged all participants to share their experiences and ensured that the patient participants were actively engaged in the discussion. The opinions of both the patient participants and their family members are included in the reported quotes. Demographic data of the focus group participants is presented in Table 2.

Table 1.

Semi-structured focus group topic guide.

1. To start off, we want to get an overall thought on registry participation. What are the reasons would you or would you not participate in a registry if approached to join a registry?

2. What benefits do you anticipate from participating in a registry? Do you feel you would benefit from participating in a registry and why or why not?

• How do you feel participating in a registry if there may be no direct benefit?

• Would you be more inclined to join a registry if there were incentives? What kind of incentives?

3. What risks or inconveniences do you anticipate from participating in a registry? Do you feel there are any risks to participating in a registry and why or why not?

• Do you feel the benefits we talked about earlier outweigh the risks?

• So you mentioned [risks], how could we as researchers minimize them?

4. If someone approached you in your clinic and asked you to participate in a registry, what information would you want to know?

• What is the most important information you would like to know?

• What would be a deal breaker for participation?

5. What do you think about having brochures around the clinic that would provide information about the registry and how to enroll? What sorts of information would need to be included?

• Would you even use brochures?

• Are there other formats you would prefer? Why?

6. There are a few different ways that people recruit for registries such as being approached by a research assistant, or having your doctor tell you about it, or even signing up online. Are there other approaches you can think of?

• Based on the discussion, what do you think about these approaches?

• What do you think would be the best approach? The worst?

7. When we do research through the university we are required to have ethics approval first—which often means we need to have written consent from participants. Here is a sample of a consent form we have drafted, which has information on details of the registry, what will be collected, data privacy. What do you think about the consent form? If you could include other information on the consent form, what would it be?

• Is the description okay? Do you understand what a registry is?

• Is there any information you feel should definitely be on the consent form?

• Are we missing anything?

8. Since you are enrolled in the cognitive clinic registry, what has your experience been like with this registry or any other registry you may be a part of? If you have been involved in a registry before:

• What was done well? What could have been done better?

• What was your biggest challenge to registry participation?

9. How do you think we could encourage more patients to participate in a registry? What should we avoid doing?

10. Is there anything else you would like us to know? Is there anything else you would like to add that we may not have covered in our discussion today?

The following five themes about barriers and concerns about registry participation emerged during analysis: access, consent process, memory symptoms, privacy of information, and purpose of registry. Three main themes emerged that described facilitators of registry participation: incentives, clinical benefits, and personal benefits. These themes are presented in Table 3 and described in detail below.

Table 2.

Demographics of focus group participants (n = 18).

Patient participants (n = 14)
Diagnosis
Dementia	4
Mild cognitive impairment	4
Subjective cognitive decline	6
Sex
Male	8
Female	6
Age (as of 30 March 2016)
Range	51–73
Mean (SD)	65 (5.16)
Education
Some high school	2
High school diploma	4
Non-university certificate	2
University certificate below bachelor’s degree	2
Bachelor’s degree	3
Unable to determine	1
Ethnicity
Caucasian	10
Asian	1
South Asian	2
Black	1
Family members (n = 4)
Sex
Male	2
Female	2

Patient participant (n = 14) demographic data were collected from the PROMPT registry. Demographic data for family members (n = 4) were not collected.

Table 3.

Themes and subthemes of barriers, concerns, and facilitators of registry participation.

Themes	Subthemes
Barriers and concerns
Access	Health information
	Information sharing
	Use of information
Purpose of registry	Information about registry
	Understanding the degree of data linkage between registry and medical records
	Information about research and registry during consent process
	Pressure to participate in the registry
	Time it takes to enroll
Memory symptoms
Privacy of information	Security of information
Privacy of information	Risk of breach of privacy
Facilitators
Potential clinical benefits	Early detection or diagnosis of conditions
	Health promotion and education
	Improved understanding of condition
	Treatment advances
	Impact on future clinical decision making
Potential personal benefits	Altruism
	Opportunities for future research
	Website to access information
Incentives	Refreshments
	Parking
	Transportation reimbursements

Barriers and concerns

The barriers and concerns the participants had regarding registry enrolment related to access of their health information, the purpose of the registry, memory symptoms, and privacy issues.

Access

Security and access of information was a common concern that impacted the participants’ decision to participate in a registry. Participants were concerned about how registry information will be used and who will have access to their health information:

“So you’re collecting a whole bunch of data in a repository and then people can access that to mine the data right? So, for the initial, obviously for starting your project, they would go to get access to the data. Is there a process that they go through, certain, I guess—the project gets approve before they go access the data? Or any researcher can just go there and mine whatever they need for whatever purpose?”

Participants expressed their wish to know which project their registry information was used for and the outcomes of that project. In several cases, participants felt reassured that there are multiple authorization requirements that prevent improper access of medical records. Another concern was the protection of their information if the registry was shared with other countries:

“It would be nice to know if the data goes outside of Canada or not cause that would affect […] the regulations in the other the countries, [it] would not be the same as ours. The protection that we are afforded may not be the same.”

Understanding the purpose of the registry

Factors such as having explicit information about the registry, feeling a pressure to join the registry, and the time it takes to enroll all impacted the participants’ decisions to consent. It was important to the participants to know the precise purpose of the registry when deciding to consent. Two participants reflected on this, saying:

“I would want to know what is the reason, and why are we having this?”

“So [knowing] the purpose of the database, whether it is diagnostic or research”

When data linkage of the registry and medical records is involved, clarification of what such linkages mean and their purpose is deemed essential by participants. Having time to thoroughly understand the presented information in order to make an informed decision was crucial as participants mentioned a pressure to participate if approached spontaneously:

“For me, I like information ahead, it’s better. Because if I have a brochure on the wall, I can look into it and if I have questions, I can ask. If somebody in the middle of my clinic comes and says, ‘Oh we’re doing this research, do you want to participate?’ Personally, I feel so hesitant to say no, so I’ll say yes. And I think ‘Did I mean to do that or no?’ […] I think it’s different, it’s personal. Some people are okay to make decisions right away and some people need to think.”

Participants suggested having a variety of methods incorporated in the recruitment strategy, such as having the registry information detailed in brochures or online, as well as face-to-face recruitment. This would allow the participant to gain a better understanding of the registry and what their participation would mean prior to consenting. The time commitment to enroll and participate in a registry were concerns, as participants did not wish it to interfere with their treatment or clinic appointment time.

Memory symptoms

Participants expressed concerns that a person with cognitive impairment may not remember the purpose of a registry after agreeing to participate and this emerged as a potential barrier to registry participation. Benefits of having an accompanying family member or friend co-participate in a registry were shared:

“Yeah or if they [family] could participate as a co-participant, especially if the person has Alzheimer’s, he won’t be able to articulate certain things that perhaps a caregiver would be able to give you or pass onto you.”

Privacy of information

Individuals were also concerned with information privacy and the security of clinical databases that would store health information. The anxiety that employers or insurance companies may have access to medical records through patient registries emerged as a potential barrier. Participants expressed concern about the vulnerability of electronic data and that unauthorized parties may gain access to sensitive information.

“In this digital age there’s so much information that can be compiled and again—who would have access? Is there any vulnerability about how it’s used?”

As such, the security measures for data storage utilized to reduce the risk and maximize privacy protection were viewed as an essential requirement for participation. For example, the de-identification of registry data was important to the participants as it prevents association of any results to specific individuals. Participants commented:

“But you did say that no names would be attached to the information. Is that correct? So there’s no risk to the person?”

“If it is safe, then I certainly don’t mind participating.”

Facilitators

In general, participants felt that the benefits of helping other people and furthering the understanding of dementia and cognitive issues outweighed the identified risks of privacy and security because of the extensive security measures implemented.

Potential clinical and personal benefits

Participants identified both potential clinical and personal benefits as motivators for registry involvement. Clinical benefits included the potential for earlier detection or diagnosis of conditions, improved understanding of cognitive conditions, and health promotion and education for both patients and health care providers. Storage of health information in a registry also represented a potential for treatment advancement such as tracking medication use and side effects. Personal, and more intrinsic, motivators for registry participation were altruistic as participants indicated their willingness to participate in a registry if it would help someone else, reflecting:

“I think that once you’ve been around, and have relatives or anything who have actually had Alzheimer’s, it’s a good idea to do something like this [participate in a registry] and that would be of benefit to somebody down the road.”

“If it helps someone then I want to do it.”

In addition, participants acknowledged that the knowledge gained from the registry may benefit an individual personally:

“Maybe later down the road if there was an issue that there might be a personal solution for you if you participate.”

Some participants also said that a website that provides information about registries that they may be involved in, research updates on registry projects, and new condition-specific developments, could be a facilitator for the participants to be involved in future research opportunities and to join patient registries:

“… and perhaps you know and your website [can] have a section on new developments, new things, or helpful information for people that login to. This area focuses on neuroscience, portions all the new things that are coming up, things that are helpful for people with Alzheimer’s or brain damage, you know what kind of resources are available. A fairly well all-encompassing website that would enhance and make it more interesting for people that want to go in there to do research and want to visit and it would also show that yes you know we have made a difference because all the things that came out of this database that has helped bring all these things to fruition.”

Incentives

All of the participants agreed that aside from altruistic reasons, refreshments and parking reimbursements are also appreciated for registry-related studies in which they participate.

“Food is nice too. Maybe minimize the out of pocket expenses that people incur coming here. I think that would be nice.”

Participants also mentioned that reimbursement for transportation costs when travelling longer distances may increase participation in registry-related research studies.

“I like the free parking paid for and I think if you were out of town they gave you some gas money.”

“… but for someone that needs special transportation, it’s really beneficial [to encourage participation]. Like my daughter … could get a bus pass but then you can use it in the taxi like you could use bus then you only pay a small amount like it’s pretty cheap.”

Discussion

Cognitive disease registries, such as PROMPT, are useful to evaluate the current practice, management and treatments of dementia and cognitive impairment, as well as to improve clinical understanding of these conditions. There are a number of dementia-specific research registries being implemented around the world. A recent systematic review found 31 different registries in 14 countries (Krysinska et al., 2017). For example, Join Dementia Registry in the United Kingdom is an online platform where patients can register to be notified and matched to research opportunities, but is not connected to their clinical data (Join Dementia Research, 2018). SveDem is a national dementia registry used in Sweden to track and evaluate existing dementia care practices to identify and implement advancements for diagnostics, treatments, and care (Religa et al., 2015). PROMPT is unique in that it is a local clinic registry where patients are regularly seen by physicians who are involved in the registry projects. This gives the opportunity for patients to participate in local projects which can directly impact their own clinical experience. Registries are a powerful tool to establish understandings of conditions at a population level by allowing participants to consent for longitudinal data collection and usage even after they may no longer have capacity to consent to new research projects. Opportunities that allow for this type of research engagement are especially important for persons with dementia to remain as active contributors to the research community, despite the potential of decline in capacity to consent as their condition progresses. As such, registry participation can increase agency and decision-making power for persons with cognitive impairment by allowing them to be heard and included in research as their cognitive abilities continue to change over time. Thus, it is important to understand the barriers and facilitators of registry participation to facilitate higher enrolment rates and ensure the perspectives of persons with cognitive impairment are represented and incorporated into registry processes. The main concerns surrounding registry enrolment were privacy and accessibility of patient information. However, in general, the participants expressed that the altruistic benefits of helping others through their registry enrolment outweighed these concerns.

The concerns expressed by the focus group participants with regards to access, consent, information about the registry, data linkage, privacy of the registry, and challenges with transportation were consistent with those previously reported in literature (Jefferson et al., 2011; Korngut et al., 2013; Lee et al., 2016; Welsh, Ballard, Nash, & Raiford, 1994). Other barriers to research involvement for persons with dementia cited by previous studies included distrust in medical system, cultural attitudes, and economic limitations (Jefferson et al., 2011; Welsh et al., 1994). Though these concerns were not raised by the participants in the focus groups conducted as part of the study presented here, they remain valid concerns.

Participants expressed the benefit of researchers using a variety of recruitment methods, such as having informational pamphlets in clinics, in addition to being approached by a research assistant as some may require more time to thoroughly consider the registry enrolment. A published guideline for neurological registry practices in Canada endorsed using multiple strategies to ensure the inclusion of vulnerable populations and increase registry participation rates (Hamilton, Genge, Johnston, & Lam, 2013; Smith, Warner, Johnston, & Atwood, 2013). Persons with dementia may traditionally be viewed as part of a vulnerable population or as unable to contribute meaningful data and thus excluded from research studies due to the clinical presentation of cognitive impairment (Moore & Hollett, 2003; Taylor, DeMers, Vig, & Borson, 2012). However, exclusion of this population results in a gap of valuable knowledge and insights contributed to the literature (Taylor et al., 2012; Wilkinson, 2002). In order to address these vulnerabilities, validate the experiences of living with dementia, and develop appropriate resources to further help improve that experience, it is especially important to include people living with dementia in research areas that concern them (Moore & Hollett, 2003; Wilkinson, 2002).

Family members of persons with dementia and cognitive impairment in our focus groups mentioned a concern regarding memory problems and expressed interest in a co-participation model. This may provide a rich data set from multiple points of view, though it can be difficult to ensure that priority is given to the voice of the person with dementia, as it may often be silenced by the voice of a care partner or family member (Cotrell & Schulz, 1993; Wilkinson, 2002). Emphasis on maintaining personhood for people with cognitive impairment is critical, and a registry-based initiative may act as an avenue to be actively involved in research and retain autonomy over participation in research studies. Another benefit of registry-based research is the ability of consented individuals to continue to contribute clinical and health information via registries, even as cognitive impairment progresses.

Participants expressed their concern over privacy issues and registry enrolment. Specifically, they were worried that employers, insurance companies, or unauthorized individuals may gain access to their health information. These worries further emphasized the importance of the de-identification of medical records stored in the registry as an added layer of confidentiality protection for research participants (Hogan, Warner, Patten, & Godlovitch, 2013). In addition to the strict privacy rules detailed in The Government of Canada’s Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS-2), each Canadian province has legislations, policies, and research ethics boards put in place to protect participant information (Hogan et al., 2013). A Canadian study surveyed 590 cardiology patients on their perspectives of access and use of administrative databases and registry records for the facilitation of clinical trials and 97.4% of the respondents would allow research access to their confidential records (Avram et al., 2018). Our focus group findings with individuals with dementia were similar to this. In an era where there is an increasing amount of information stored electronically (Collier. 2015), a common sentiment was that as long as their records are confidential with secure access, participants are willing to have their information used in research to benefit others. We found that once the participants’ concerns were appropriately addressed and reassured with thorough explanation of the extensive security measures utilized for data protection, their perception of the associated privacy risks lowered significantly. This further emphasized our participants’ recommendations to provide a clear understanding of registry process and security prior to consenting.

Consistent with a questionnaire study conducted by Avent et al. (2013), our focus group participants expressed that altruism was a motivator for registry enrolment and participation. The participants viewed registries as opportunities to help others living with the same or similar conditions. Additionally, providing consent to be contacted for future research opportunities represented a way to be notified of studies that may personally benefit them, and were eager to be engaged in this way. The participants also discussed the benefits of having a website in order to increase public awareness of neurological diseases. Based on the current literature, this is the first reported mention of a website by patients to indicate that they may find it beneficial for improved communications about neurological registries. A website could increase research transparency and dissemination of information by keeping participants up to date with local registry studies and opportunities that are related to their condition. A website could also be an effective communication tool between researchers and participants so that persons with dementia and cognitive impairment would be able to meet self-identified knowledge gaps and remain involved and up-to-date at their own pace. To this end, the larger initiative this study is part of has recently launched such a website (www.brainandmentalhealthclinics.com) to further engage patients and care partners in registry-related research activities in the local specialty neurology and psychiatry clinics.

Study limitations

This work contributes the voice of people living with cognitive impairments to the published literature but also has limitations. When we invited participants to attend the focus groups, they were given the option to invite a family member as well. We emphasized at the beginning of the focus groups that this study is intended to understand the patient perspective in registry participation, but we recognize that there may be a power dynamic between family members and patients while interviewed together in the focus group and this can cause limitations to the study. Due to resource constraints all participants were English speakers. It is important in future work to include minority ethnic and language groups with researchers who could facilitate focus groups in other languages to capture perspectives from different cultural influences. Our participants also represented a self-selecting group who were all currently participate in the PROMPT registry, and who had consented to be contacted for future research opportunities. To fully understand the barriers to registry participation, conversations with those who initially declined registry enrolment would be highly beneficial.

Conclusion

In general, participants felt that the benefits of participating in a registry to help advance knowledge of cognitive conditions outweighed their concerns about privacy and information security, and that these concerns could be easily ameliorated via clear and high quality provision of information about registries. As it is critical to engage participants in health research for person-centered care, participants emphasized that researchers should actively address issues regarding privacy, access, and consent for the registry and maintain ongoing communication about registry projects. To achieve this, registry staff needs to explicitly explain where registry data will be stored and who will have access to that information. Ultimately, patients have full agency in their registry participation and should have the opportunity to withdraw from the registry at any point.

Footnotes

Acknowledgements

We would like to thank the participants for contributing their invaluable time and perspectives to this research.

Declaration of Conflicting Interests

The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: NJ receives grant funding for unrelated work from Alberta Health, NINDS (NIH IU54NS100064) and the University of Calgary. There are no other potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Ethical approval

This project was conducted as part of a larger, ongoing research initiative whose objective it is to improve the implementation and use of patient registries in a number of specialty neurological and mental health clinics at the University of Calgary in Canada. The project received ethics approval from the Conjoint Health Research Ethics Board at the University of Calgary (REB15-1825).

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The PROMPT Registry is funded by the University of Calgary; Brain and Mental Health Research Clinics (funded by the Hotchkiss Brain Institute, Department of Clinical Neurosciences, and Department of Psychiatry, University of Calgary).

Jeanie YY Lee is a research assistant in the Brain and Mental Health Research Clinics at the University of Calgary. She obtained her Bachelor of Science degree from the University of Calgary in 2017. She is passionate about using patient-oriented research and quality improvement methods to address healthcare disparities.

Rachel E Crooks is a master of science student in Community Health Sciences at the University of Calgary. Her research background involves the development of registries in neurology and psychiatry clinics and the use of qualitative methodology. She is dedicated to incorporating the perspectives and voice of people with lived experience into the research process.

Tram Pham is a master of Public Health student at the University of British Columbia.

L Korngut is a neurologist, clinical neurophysiologist and Director of the Calgary Neuromuscular Program and the Calgary ALS and Motor Neuron Disease Clinic. His research includes phase II and III clinical trials of new therapies for neuromuscular conditions. He is the National Principal Investigator of the Canadian Neuromuscular Disease Registry that now includes 31 participating clinics and over the past eight years has recruited over 3000 patients including over 1600 with ALS.

S Patten obtained a medical doctorate (MD) from the University of Alberta (Edmonton, Canada) in 1986 and subsequently a specialist certification (FRCPC) in Psychiatry in 1991. He completed a PhD in epidemiology at the University of Calgary in 1994. Currently, he is a Professor in the Cumming School of Medicine at the University of Calgary.

N Jetté is a professor of Neurology and Population Health Science and Policy at the Icahn School of Medicine at Mount Sinai. She is Vice Chair Clinical Research and Chief of the Division of Health Outcomes and Knowledge Translation in the Department of Neurology at her school. She is a health services researcher whose research program focuses considerably on neurological outcomes, appropriateness of care and the development of tools to improve implementation of best practices in clinical care.

EE Smith is an associate professor of Neurology at the University of Calgary and a member of the Hotchkiss Brain Institute. He directs the Cognitive Neurosciences Clinic at Foothills Medical Centre in Calgary, Alberta, Canada.

Pamela Roach is the program manager for the Brain and Mental Health Research Clinics at the University of Calgary and an Adjunct Professor of Community Health Sciences at the University of Calgary. She has worked in health services research for over 15 years in a variety of roles in both Canada and the UK. She works toward implementing models of engagement between communities and younger people with dementia, and understanding the family's lived experience of early onset dementia.

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