Reciprocity in research: Participant views on return of results in the WATCH-PD qualitative study

Abstract

Background

Research participants increasingly desire access to their personalized results. A growing emphasis on patient engagement and recognition of participants as partners in research has intensified ethical considerations around data sharing and return of results. While some research teams have started returning personalized results, important questions remain about how to do so responsibly and effectively.

Objective

To explore the perspectives of people with Parkinson's on return of individual research results, including preferences regarding digital data.

Methods

This qualitative sub-study was conducted as part the WATCH-PD study (Wearable Assessments in The Clinic and at Home in PD). Online qualitative interviews to explore perceptions on return of research results were conducted annually each year from 2022–2025. Content analysis techniques were used to analyze transcripts.

Results

33 participants completed interviews and were included in the analysis. Three themes emerged: (1) Most participants desire to receive personal results provided the results are understandable to them; (2) Knowing personal results could support disease management and future planning; and (3) Access to data is an ethical obligation of the research team and a reciprocal return of personal information.

Conclusions

Participants in this study wanted the choice to receive personal research results, and most preferred disclosure even when findings might be unfavorable. Although returning person-level data presents logistical and ethical challenges, engaging participants as partners through transparent data sharing may strengthen engagement, trust, and advance patient-centered research.

Plain language summary

Fairness in Research: What Participants with Parkinson's Want to Know About Their Personal Results from the WATCH-PD study

People taking part in research increasingly want to see their own results, but studies have not always shared individual data. This study looked at what people with Parkinson's disease thought about getting their personal results from a long-term study using wearable devices (WATCH-PD).

The researchers reviewed 134 interview transcripts from 33 participants collected between 2022 and 2025.

Three main findings came out:

1. Most participants want to receive their personal results, as long as the information is explained in a way they can understand.

2. Participants felt that having their results could help them manage their condition and plan for the future.

3. Many saw access to their data as the fair and ethical thing to do, since they helped generate it.

The study concludes that people with PD in this study wanted the option to get individual results, even if the results were not good news. Although sharing personal data raises practical and ethical challenges, doing so openly and with participant input could increase trust, engagement, and make research more patient-centered.

Introduction

Research suggests that people participating in research studies want access to their personalized results, which is a growing trend that raises ethical and practical questions for researchers.^1–5 Historically, research studies have not returned individual results to participants unless the data was validated, identified a clinically actionable health risk to the participant, and was deemed appropriate by the research team and institutional review board.^6–8 Reasons for limiting access have included concerns that premature disclosure could compromise the integrity of the study, ⁶ risk of medical or psychological harm to participants,^2,9–13 limited resources to support data sharing,^14–16 and legal liability^6,10,15,17 particularly when data are experimental and cannot be acted on clinically.^5,7,15 In many situations there may be no clear action plan or mechanism for follow up, making it difficult for healthcare providers to manage findings ⁶ which can leave participants feeling distressed and unsupported.^14–16

In contrast to these perspectives, a recent cultural shift towards participant engagement and recognition of patients as partners in research has raised questions about whether research teams might have an ethical obligation to share person-level data and return individual research results.^1,6,18,19 Some argue that sharing research information is empowering and enables participants to make more informed and meaningful health decisions, ¹ and that withholding information is potentially harmful, essentially paternalistic^6,19 and carries ethical and legal risk if results might be clinically actionable.^10,20 In fact, newer evidence suggests that return of individual results might hold significant benefit for participants, serving as a motivator for behavioral changes that can delay onset or slow disease progression^6,8,9 and support informed decision making.^1,9,20,21 Others note that participants might want to know their research-related results regardless of whether findings are actionable or not.^5,16,19

In Parkinson's research, return of results remains relatively uncommon, with most studies having no formal plan for reciprocity and substantial on-going debate within the field regarding risks and benefits.^2,10,18,22 In recent years, motivated by growing advocacy from participants, several organizations and high-profile research studies have begun piloting return of selected results, such as clinical testing, biological status, and genetic characterization (Supplement A).^{7,15,20,23–33} The rise in digital research raises the possibility of similar sharing of data from remote symptom monitoring, such as sensors, mobile applications, and other motion capture systems.^34–36 These studies generate vast quantities of granular data that can serve as early and objective indicators of disease progression.^3,17,36 However digital outputs are not easily shared, and require expert interpretation, validation, and translation to be interpretable by lay audiences.^34,36 Furthermore protocols and guidelines for returning digital results to participants are virtually non-existent, and few have attempted reciprocity in these contexts. ¹⁸ Finally, while evidence supports that people desire their results from research in general,^1,3,6,37 participant views on receiving personal data from digital research is largely unknown. Thus, this study aimed to explore the perspectives of people with Parkinson's on return of individual research results, including preferences regarding digital data.

Methods

Setting and sample

This qualitative study was conducted as part the WATCH-PD study (Wearable Assessments in The Clinic and at Home in PD). WATCH-PD is an ongoing 5-year longitudinal, observational study in the United States evaluating the use of smartphones and smartwatches for remotely monitoring disease progression (e.g., walking, balance, tremor, fine motor) in people with early PD (criteria: < 2 years from diagnosis, Hoehn and Yahr (H&Y) ≤ 2; no confounding co-morbidities) versus healthy controls. The Montreal Cognitive Assessment (MoCA) and other clinical assessments were performed at the first 12-month visit in-person with the remaining assessments performed virtually. ³⁵ English-fluent participants with Parkinson's in the parent study (N = 82) were recruited from 17 Parkinson's Study Group research sites across the United States. ³⁵ As part of the broader study, qualitative interviews were conducted in a representative subset of 40 participants to evaluate personal experiences of early PD (e.g., symptoms and impacts), change over time, and relevance of the digital measures to capture personal symptom experiences.^35,38,39 IRB approval was obtained (University of Rochester IRB#00006429; University of Massachusetts Dartmouth IRB#23.044); Participants provided electronic consent, and data were collected in accordance with the Declaration of Helsinki and the Belmont Report.^40,41

Data collection

Each year for four consecutive years (2022–2025), online symptom mapping interviews were conducted with WATCH-PD participants by an JM (white, female, PhD-prepared, board-certified nurse practitioner, unknown to participants, external to parent WATCH study) via Zoom video-based conferencing. Symptom maps were co-created by the interviewer and participant using X-mind mapping software ³⁸ to delineate all subjective Parkinson's symptoms (nodes) and related impacts (branching descriptions). A sample map is shown in Supplement B. Symptom maps (i.e., the representation of patient perceived experiences of Parkinson's) were emailed to participants who wanted them, within 1-2 days following the yearly interview, in a PDF format that could be saved or printed and shared with others. Digital results were not returned to participants based on the study protocol, the absence of validated protocols for returning digital results, ³⁴ and limited guidance to ensure safe disclosure of information. ³ Aggregate-level results were presented during a single optional WATCH-PD participant seminar on study progress and findings.

Evaluating participants’ preferences regarding return of digital health results and the PD symptom maps were not part of the original Year 1 qualitative protocol. However, due to a recurring theme of participants spontaneously requesting digital results during the year 1 interviews, the study team became aware of the need to explore preferences on return of results in general to understand values and expectations for future work. The longitudinal interview protocol was subsequently amended to ask about participant perspectives on return of results for interview years 2–4, including exploring which type of results would be desirable, the perceived benefits and disadvantages, and reasons for wanting results (Interview questions - Supplement C).

Data analysis

Audio/video recorded interviews were transcribed verbatim. Transcripts were analyzed using Nvivo, Excel, and content analysis techniques, including: (1) open coding to identify participants’ thoughts about receiving research results, followed by (2) pattern coding to develop overarching themes, and (3) frequency coding to systematically assess the prevalence of themes identified in steps 1 and 2. ⁴² Themes were developed inductively through discussion with the study team, with in vivo quotes to maintain authenticity and keep the analysis grounded in the participants’ language. ⁴² Measures to enhance rigor and validity included member checking and participant feedback, experienced analysts for all coding (MT, JM; PhD-prepared); participant identifiers and year notation for all supporting quotations; data triangulation (perspective maps, transcripts, audio/video recordings); and inclusion of participant co-authors. ⁴³

Results

Sample and interview characteristics

A total of 134 unique interview transcripts were included in the final analysis, with 31/40 participants completing all four years of data collection (77.5% retention). Of the 40 original participants, seven completed only Year 1 (lost due to gap in study/unable to recontact); one dropped out at Year 3 and one at Year 4 due to lack of time. As shown in Table 1, participants were largely White, non-Hispanic (90%) males (58.1%), with an average age of 67 years (SD 8.5) in Year 4. By Year 4, the mean duration since PD diagnosis was 5.4 years (SD 0.9), and most participants were taking medications for PD (80.6% vs. 40% in Year 1). Two participants had deep brain stimulators by the time of the third and fourth qualitative interviews.

Table 1.

Demographics and clinical characteristics.

	Parent study (n = 82)	Year 1 interview (n = 40)	Year 2 interview (n = 33)	Year 3 interview (n = 32)	Year 4 interview (n = 31)
Age, years, mean (SD)	63.3 (9.4)	63.9 (8.8)	65.9 (8.8)	66.8 (9.4)	67.3 (8.5)
Female, n (%)	36 (43.9%)	20 (50.0%)	15 (45.5%)	14 (43.8%)	13 (41.9%)
Race/ethnicity, n (%)
White	78 (95.1%)	37 (92.5%)	30 (90.9%)	29 (90.6%)	28 (90.3%)
Asian	3 (3.7%)	3 (7.5%)	3 (9.1%)	3 (9.4%)	3 (9.7%)
Not specified	1 (1.2%)	-	-	-	-
Hispanic or Latino, n (%)	3 (3.7%)	1 (2.5%)	0 (0%)	0 (0%)	0 (0%)
Education > 12 years, n (%)	78 (95.1%)	40 (100%)	33 (100%)	32 (100%)	31 (100%)
PD duration, years, mean (SD)	0.8 (0.6)	2.1 (0.9)	3.2 (0.7)	4.5 (0.9)	5.4 (0.9)
Taking medications for PD, n (%)	-	16 (40.0%)	25 (75.8%)	25 (78.1%)a	25 (80.6%)a
H&Y, n (%)
Stage 1	19 (23.2%)	6 (15.0%)	4 (12.1%)	0 (0%)	0 (0%)
Stage 2	62 (75.6%)	34 (85.0%)	25 (75.8%)	28 (87.5%)	28 (90.3%)
Stage 3	1 (1.2%)	-	2 (6.1%)	1 (3.1%)	1 (3.2%)
Stage 4	-	-	-	1 (3.1%)	-
Not specified	-	-	2 (6.1%)	2 (6.3%)	2 (6.5%)
MoCA, mean (SD)	27.6 (1.4)	28.0 (2.3)	27.1 (2.2)	28.0 (2.5)	28.5 (1.6)

Notes: MoCA = Montreal Cognitive Assessment scores of 26–30 are considered normal; H&Y = Hoehn & Yahr stage ≤ 2 is consistent with early PD.

^aIncludes one participant on PD medication plus treated with Deep Brain Stimulation.

The first evidence of participant's desire to receive research results emerged spontaneously (unsolicited) in year 1 interviews:

P3 (Year 1) “Will I get a chance to debrief with one of the experts that created the study at some point, or will I get a chance to see the results of the [digital] study?”

P16 (Year 1) “Someday I’d like to learn what my results were in the year that I took these [digital] tests to see if there was a trendline of my decline.”

P37 (Year 1) “I would love to have it [symptom map]. I did another study where they took skin off the back of my neck. Then I did another study. I feel like I’m in all these studies, but I’m like, “I have no results.” That's the funny thing.”

In years 2 through 4, following the protocol modification to further explore this finding, three key themes were identified: (1) Most participants desire to receive personal results provided the results are understandable to them; (2) Knowing personal results could support disease management and future planning; and (3) Access to data is an ethical obligation of the research team and a reciprocal return of personal information. Prevalence of themes was consistent across years, with frequencies by age and sex presented in Supplement D.

Desire to receive personal results: “I'd love to get feedback”

Nearly all participants (94%) (31/33) wanted to receive results (digital data and symptom maps) at some point in the research study, with the highest interest expressed at the start of the study and declining slightly with time (Table 2). One participant explained it this way, (P3, Year 4) “…the stipends I get for the study, I could care less one way or another, but getting data and information has a real value.”

Table 2.

Yearly trend: return of research result year 2 (N = 33), year 3 (N = 32), year 4 (N = 31).

Status	Year 2 n (%)	Year 3 n (%)	Year 4 n (%)	All years N (%)
Want results	31 (94%)	28 (85%)	28 (85%)	33 (83%)
Not sure want results	1 (3%)	2 (6%)	2 (6%)	3 (9%)
Do not want results	0 (0%)	0 (0%)	1 (3%)	1 (3%)
Not asked/Missing data	1 (3%)	3 (9%)	4 (12%)	6 (18%)
Results Returned	27 (84%)	23 (72%)	24 (77%)	37 (93%)

Note: All Years includes Year 1 – Year 4 (N = 40).

Most elected to receive their personal symptom maps: 93% (37/40) in year 1, 82% (27/33) in year 2, 72% (23/32) in year 3, and 77% (24/31) in year 4. Participants also repeatedly expressed interest in receiving digital health results, which were not shared due logistical reasons and lack of protocol for sharing. In general, if a participant wanted results (digital or symptom map) early in the study, they continued to want results in subsequent years. After four years, 85% (28/31) of participants still wanted to receive their data when asked about their preferences. Two participants who wanted results in Year 2 lost interest in subsequent years. Reasons for this change included not knowing what to do about their symptom progression or already having a plan in place to manage it. Participants’ perceptions on return of results are presented in Table 3 and in the following quotes:

P6 (Year 2) “Cognitive type testing and physical testing … to see progression… Yeah, I would wanna know that…(at Year 4) I really don’t care. I think it's interesting. I understand the importance of what you’re doing [and] I'm glad to help, but—If I've had speaking problems, I know to go to the Parkinson Voice Project …. I know what to do…and I've got a plan of action for my walking [and] my balance.”

P22 (Year 2) “I suppose [I want results]. Yeah…. (at Year 3) No [don’t feel strong either way]. I mean, my theory about data is you gotta do something with it. What am I gonna do with it? I don’t know.”

Table 3.

Participant feelings on return of research results (N = 33).

Major theme	N (%)	Participant ID (P#) Year (Y), and quote
Wanted results from research	31 (94%)	P2 (Y2) “Oh, absolutely. That's why I do it.” P9 (Y4) “I mean, it would be interesting to see my personal data over the course of the years and to see how it's changed.” P10 (Y3) “I think it's useful. Now in either of these trials, I'm not getting any feedback. If I was able to chart my progress, I would be more encouraged to check in once a week. Do the exercises and then see how I did…The fact that they released, my U-P-D—Alpha nuclear results and my DaTscan results made me feel more favorable of them.” P40 (Y4) “It’d be nice. At least in my case, I'd like to know what's happening to me. The whole point of this is to see if we can measure what's happening with the disease, happening with my disease.”
Did not want results from research	1 (3%)	P5 (Y4) “I’m reaching a stage where I don’t want too much information about it. Frankly, I'm glad to do scientific documentation of the development of symptoms…In some ways I don’t really want to know… I wouldn’t mind [getting a report back]. Happy to stick in the file so in case it might be useful sometime down the road, but I don’t spend a lot of time going over these things when I get them back.”
Unsure about receiving results	3 (9%)	P5 (Y2) “I know if I spend a lot of time thinking about this, I think it's depressing. It's the outlook in the long term is for complications in life and a lot less ability to do things that you’ve enjoyed in the past….Yeah, I'm not sure. Like I said, that may vary from day to day, and some days it’ll be like, “Yeah, just let me know when things are getting worse, especially if there's things I can do to compensate for it.” I think most of that will be obvious anyway, so.” P22 (Y3) “No [don’t feel strong either way]. I mean, my theory about data is you gotta do something with it. What am I gonna do with it? I don’t know.”
Wanted to know if getting worse	31 (94%)	P20 (Y2) “That's a tough one. Yeah… I would [want to know if I was getting worse].” P40 (Y3) “Yes. I'd like to know where I'm getting worse…Don’t just tell me I'm getting worse. If you’re gonna tell me I'm getting worse, tell me where.” P38 (Y4) “Sure, I would like to know, not just if my symptoms are getting worse but on what percentile, are they worse than average? Some relative measurement. On average, people's symptoms get worse by 10%. Mine got worse by 20% or 5%.”
Not sure want to know if getting worse	4 (12%)	P22 (Y3) “I'm not sure it would be useful other than just, like, doom and gloom, ugh, I'm getting worse. I don’t necessarily need the data in a graph to show m—yeah, I live it. I know it's getting worse. So-so I guess I'm neutral at this time.” P5 (Y4) “Again, this is one of the questions that depends on the day and the week or whatever, whether I really want to know more or not.” P12 (Y4) “My first reaction is yes, but then the more I think about it, I’m like, I’m not sure that I would want it, because I’d hate to see, “Well, you’re doing way less than—you’re worse than most people.”
Would not want to know if getting worse	1 (3%)	P35 (Y4) “No [laughter]. Unless it was something I could do about it. I think it would be really important to be like, “It's time to consult a speech therapist and do the following exercises.” I wouldn’t want to know. I would want it as constructive criticism. As with most things in life, don’t just tell me what's wrong. Tell me what I can do. If there's nothing I can do, then keep it to yourself [laughter].”

Only one person (P5) did not want results returned at any timepoint. This participant transitioned from being initially unsure to definitely not wanting results because the results made them more aware of the disease progression. In year 2, (P5) stated, “I'm not sure ‘cause I'm trying to walk a fine [line]—I wanna keep track of things and not be caught by surprise, but at the same time, I know if I spend a lot of time thinking about this it's depressing.” In Year 3, participant (P5) was still somewhat neutral, “I don’t really want to know if I’m going downhill… I'm trying to do a balancing act here of not being, um, you know, kind of pretending it's not happening at the same time I don’t wanna be dwelling on it too much.” However, by year 4, the participant (P5) clearly did not want results, “I’m reaching a stage where I don’t want too much information about it [PD]… In some ways I don’t really want to know. I wouldn’t mind [getting a report back]. Happy to stick in the file so in case it might be useful sometime down the road, but I don’t spend a lot of time going over these things when I get them back.”

When asked about preferences for digital results, most participants desired individual results, however 33% (11/33) wanted a range of aggregate and individual-level information (Table 4). Suggestions for return of aggregated results included an annual report provided to participants or hosting a second WATCH-PD seminar to provide an update on how the study was progressing. Those seeking aggregate plus individual results wanted the frequencies and trends to compare themselves to others, to assess their relative rate of progression. P3 (at Year 3) noted, “I would like to get more feedback on my data and what it means relative to… other people with Parkinson's, and progression, and relative to myself.” P12 (at Year 2) also stated, “I feel like there’d be value in understanding your results versus the other participants or your results versus prior tests.”

Table 4.

Type of research results requested.

Major theme	N (%)	Participant ID (P#), Year (Y), and quote
Individual results	30 (91%)	P12 (Y4) “I would love to see charts and graphs ‘cause I’m just a very visual person in terms of how the results are versus where I started.”
Group results	10 (30%)	P4 (Y1) “I enjoyed the webinar that was held a couple of months ago. That was really interesting to learn the midway results.” P24 (Y3) “I would take whatever feedback I can get. Even group feedback would be helpful to kinda know—'cause I know kinda where I am on the spectrum, so to get the group feedback would be very helpful. It would help me understand where I might be headed.”
Both individual and group results	11 (33%)	P12 (Y2) “I feel like there’d be value in understanding your results versus the other participants or your results versus prior tests.” P3 (Y3) “I'd like to continue, but I would like to get more feedback on my data and what it means relative to—not necessarily other people with—well, yeah, other people with Parkinson's and progression and with—and relative to myself like you indicated. I think I'm personally competing against myself, not against the disease.” P24 (Y3) “Relative to myself, yeah, and how I've changed over time and normal control groups. … And-and even group feedback would be helpful to kinda know—'cause I know kinda where I am on the spectrum, so to get— the group feedback would be-would be very helpful. It would help me understand where I might be headed.”
Immediate results	2 (6%)	P10 (Y4) “Uh, I'd want it every time I took the test. Yeah. I'm an immediate feedback person.”
Annual report	4 (12%)	P3 (Y4) “Annual report, maybe.” P38 (Y4) “Sure, I would like to know, not just if my symptoms are getting worse but on what percentile, are they worse than average? Some relative measurement. On average, people's symptoms get worse by 10%. Mine got worse by 20% or 5%.” P16 (Y4) “I just hope that you can hold another seminar for participants to let us know how the study is going, whether and how our testing of ourselves remotely is being received by the people who have to crunch the numbers.”
Useable format	12 (36%)	P12 (Y3) “Maybe some of these summaries would say, you’d go back and say, “Hey, there's some slow progression in this area, what do I start going to physical therapy?”
Objective data	8 (24%)	P9 (Y2) “I'm a very data-driven person, so if I had the data, it would help me with my therapeutic decision making.” P17 (Y3) “I think it's very detailed, and it makes me think more about what my symptoms are, and I like breaking it down and seeing it all in front of me.” P3 (Y4) “I still feel like the daily full data on the watch is giving a little bit more real-world information.”
Interpretable results	5 (15%)	P16 (Y3) “I would like to know in layman's terms whether my walking is indicating a future problem.”
Something to upload to my health portal	4 (12%)	P6 (Y2) “I could see where it might be of use to physicians that you download information. You’re coming in for an appointment, and that they can actually maybe see on a chart. I don’t know if this is downloaded into some kind of electronic chart or whatever, but that could give information to them about what's going on.”

Additionally, participants wanted results that were objective, understandable, and in a useable format that could be uploaded to an electronic health record for sharing with healthcare providers.

P28: (at Year 3) “If you’re giving me specific feedback, “Hey, fine coordination or whatever is getting worse,” then it would help me know, okay, I need to work on that.”

P2: (at Year 4) “[My neurologist] responded to it [the symptom map] positively and favorably, and I think that's part of the reason she decided to try the [new medication] … It also allows her to prep herself before I come in on my six-month checkup. …she’ll talk about this diagram and say, “Okay, this is what you said here. Is there something more that's changed or that we wanna focus [on] and are there other ways we can treat this?” So, it actually becomes part of my medical record.”

Others (9%) indicated that the usefulness of receiving results, such as digital health measures, would depend on accuracy and how well the results corresponded with what they were experiencing symptomatically. P1 (at Year 2) noted, “If it [digital device] could do it every day without me—it would need to show a trend and not just a particular day… because we can color, we can filter whether we think we’re getting worse or we can think we’re getting worse when we’re not getting worse. I think having a watch or something scientific measuring that would [provide usable objective data].

Knowing results supports disease management and planning: “It would help me”

Many participants (76%, 25/33) felt that receiving personal results from a study would be valuable because it could help them to trend their symptoms and plan for disease progression or seek additional therapy for worsening symptoms. For example, symptom maps were used by some participants to track progression by comparing to previous years. Commonly listed benefits of receiving symptom maps included being able to clarify and organize their symptoms and personal experiences to better understand PD, and monitoring response to therapy, as seen here:

P3 (Year 2) “That impacted me a lot more than I thought it would… I think it's almost like therapy to me.”

P9 (Year 2) “I think it's [symptom mapping] really helpful—it would be really helpful for monitoring response to therapy as an endpoint because—especially since I just started medication, and I'm constantly questioning, “Is this helping me? Is this helping me enough?”

At the same time, some participants (30%, 10/33) acknowledged that receiving results could potentially be upsetting if the results indicated they were getting worse. However, nearly all (94%, 31/33) still believed it was worth knowing if they were getting worse, so they could take actions to delay progression (85%, 28/33) or plan more effectively for the future (45%, 15/33). Actions to slow progression most often included: (1) engaging in exercise, (2) starting or adjusting medications, (3) trying a new therapy, (4) making dietary changes, and (5) incorporating stress management strategies into their life as shown in Table 5 and in the following quotes:

P14 (Year 2) “I would still rather [know]—'cause then I can be like, “Okay, what can we do about this? Do we need to up the medicine? Do we need to—do I need to walk more or exercise more? I'd want to know if there's something I can do that I didn’t realize it was getting worse, but if I was doing this one thing, it would’ve helped.”

P9 (Year 2) “I'm a very data-driven person, so if I had the data, it would help me with my therapeutic decision making. I think I would want to know [if getting worse] because I would want to be able to put things in place to make things easier for my family and to be very proactive about what steps I would do and also, again, maybe change the way I spend my time. If I were to realize that I was deteriorating, I might retire early—you know?..and change my focus.”

Table 5.

Reasons provided for wanting research results.

Major theme	N (%)	Participant ID (P#), Year (Y), and quote
Take action to change behavior	28 (85%)
Exercise	12 (36%)	P1 (Y4) “I don’t think I have any issues with walking, but if my stride was getting smaller or if it was indicating that I don’t have the balance that I thought I'd have, I'd like to know that…I would do things to manage that…I think early on with Parkinson's, I thought everything that I lost is lost, but I keep learning that I need to use my speaking muscles more or my breathing muscles more, or my smiling muscles more that I'm not curing the disease, but I can make a difference in them. Boxing is the biggest thing.” P11 (Y3) “I guess I’m self-medicating in the sense of exercise and yoga. Those things are—if I was getting worse, I would up the amplitude of those activities.”
Medication	9 (27%)	P7 (Y3) “Just having some awareness of where I’m at and if I needed to start considering using some other meds to help address the symptoms.”
New therapy (red light, hyperbaric chamber)	3 (9%)	P20 (Y3) “I would still wanna know, and myself I know that since I’ve been diagnosed, I’ve been tryin’ to read and listen to as much stuff, tryin’ to go to support-group meetings because I wanna know, “Okay. Well, that might be something that might work for me.” I will try to do something about it.”
Dietary changes	2 (6%)	P36 (Y3) “Me personally, what happens to me is I go through a lot of highs and lows. I’ll try something new. Like I say, I’ll change my diet, or I’ll try a new product or stuff like that, so you kind of have the hope.”
Stress management	1 (3%)	P10 (Y2) “To mediate. For example, if you told me my gait was getting worse, I might say, Okay, I need to be more careful. Perhaps I should get a cane. Perhaps I should look into different exercises that might improve it. I'm an optimist.”
Plan for Future	15 (46%)	P9 (Y2) “I guess, identifying more subtle changes that perhaps would warrant an intervention, — If you started to detect something early, then you could potentially either intervene to treat it or put safeguards in place to prevent an issue before you had—for example, if you started to notice issues with balance that you weren’t really aware of, maybe that would affect your decision to use a cane or to change the shoes that you wear or how you walk down stairs or something like that, a behavioral change that might make you less likely to have a fall.” P24 (Y3) “If there's things that the group has pointed out that are helpful, that you see, I certainly wanna know ‘em because I would-I may try them.” P29 (Y4) “Well, maybe you could work on it to slow it down or prevent it.”
Trend symptoms	25 (76%)	P1 (Y2) “Just think it's fascinating to be able to have ongoing monitoring in between visits, that it could show differences in real time than just twice a year seeing the doctor.” P3 (Y3) “I wish there were a way to see my changes in symptoms and changes in time and changes in thoughts.” P9 (4) “I mean, it would be interesting to see my personal data over the course of the years and to see how it's changed.” P14 (Y4) “I think, yeah, if you could look at the beginning and see over time this is getting worse or this has just flatlined and stayed the same or—I think that would be really interesting and helpful to see what the changes are from test to test.”
Personal knowledge	21 (64%)	P11 (Y) “General knowledge-type-a thing, you’d wanna know.” P13 (Y4) “It's very important for me to discover myself. Technology helps me the more understand about my Parkinson's.”
Symptom recognition	13 (39%)	P13 (Y4) “Maybe you can find out the tremor from the morning to evening, catch daily tremor maybe most important. Interesting about the every day.”
Share results with healthcare provider	10 (30%)	P2 (Y3) “We’ve done this three times now, the first one I actually shared with my neurologist and she was quite pleased with it. I’m probably going to provide this one to her as well, so that she can see the change in progression in the areas where I’m still strong and the areas where I’m being impacted.” P36 (Y2) “I would love it if it would communicate to your neurologist and show that your heart rate is getting up to that range so you’re held accountable for your exercise.” P38 (Y4) “Um, and not just offer us but also send a report to our personal neurologist.”
Share results with family or others	3 (9%)	P10 (Y1) “Actually the mapping will probably prove useful ‘cause I'm gonna have to fill out my disability application.” P12 (Y4) “Yeah, I asked for the data ‘cause I wanna review it with my wife and see if she feels I've missed anything significant.”

Relatively few participants (18%, 6/32) voiced concerns about protection of privacy with both digital results and symptoms maps. In their words:

P30 (at Year 2) “Yeah, I would be concerned about privacy issues definitely.”

P35 (at Year 3) “I think it's great as long as the government doesn’t use it to target me…if the makers of a Parkinson's medication or device were to use this information to target me for marketing because I think that's one of the most dreadful evil manifestations of our digital age is people are so vulnerable.”

P23(at Year 4) “Probably, you need to protect the data and particularly in the internet age.”

However, autonomy to make their own decisions about what results were shared and when to share was viewed as highly important. In contrast to those who wanted results unconditionally, some participants (12%) indicated they would only want digital health results showing progression if the results came with actionable suggestions. P28 (at Year 3), “If you’re telling me, ”“Hey, your balance is getting worse,”“ I'm like, “All right, well then I'm gonna go do some yoga and practice some balance exercises.” I know I can help myself get better because I've seen it happen. I think that if it was hopeless and you’re just telling me I'm getting worse, and I know I'm getting worse, then I'd say, “I don’t wanna know.” P36 (at Year 4) commented similarly but emphasized the need to be able to choose whether or not to receive results, “When I first got diagnosed and I was in early stages, it would crush me, but now I take it as more information. I think it depends on how far [you are in] the journey you’re on…It would [need to] be their decision though, to find out that information.… If I was in the early stages…I wouldn’t have asked for a copy [of the symptom map].”

While participants greatly valued receiving a copy of their personal symptom map results, many (64%) commented that they did not always need to benefit personally from research and generally enrolled in a study because of a desire to help others. This is illustrated in the following quotes:

P36 (Year 1) “Even though you’re not getting anything back from [the study], …[it] just gives you more of a positive attitude like you’re helping in some way. You’re helping yourself. You’re helping the other people.”

P25 (Year 3) “Generally I feel fine with it [not getting results]. I feel like I'm making a contribution to research.”

P14 (Year 4) “I feel like I'm helping in some small way … if it helps someone understand Parkinson's better, I'm glad to do it.”

Perception of lack of reciprocity when information is not shared: “Ethically it is an issue”

Not only did most participants (94%, 31/33) want results, but some (21%, 7/33) spontaneously described a sense of inequity arising from participating in research studies that did not share results (Table 6). Participants felt they were giving part of themselves to further science, including their time, effort, and biological samples, which would potentially help pharmaceutical or device companies to profit, yet were not receiving any personal, equitable benefits from their participation.

P37 (Year 1) “I feel like I’m in all these studies, but I’m like, I have no results.”

P17 (Year 2) “I don’t see any results or any assessments because it all goes for you. That's not a benefit to me.”

P10 (Year 3) “I think ethically it is an issue that you give information, you give parts of your body…you’re part of a product. Yet, you don’t get something back…. It's like you’re connected to it [and] You want to feel respected.”

Table 6.

Advancing reciprocity in research.

Major theme	N (%)	Participant ID (P#), Year (Y), and quote
Equity
Giving but not receiving	7 (21%)	P37 (Y1) “Then I did another study. I feel like I’m in all these studies, but I’m like, “I have no results. That's the funny thing.” P24 (Y3) “You know, that's part of me, and I put a high value on planning because I'm living alone and there's nobody else around me. Everybody's, you know, back in the Midwest, so for me, any-any kind of planning I can do to kind prepare myself for what may occur with this disease up the road is gonna be very, very helpful…I have one neurologist, and then I have another one-I have a neurologist that does the Botox and another neurologist, but they don’t really give you feedback… it was basically tell us, but, you know, we don’t-we’re not gonna tell you.” P21 (Y4) “Yeah, and I was trying to glom onto anything that—any of the early studies, hoping to find something that worked, but you get a little jaded. There's the early hope, and then a lot of them tend to not pan out, but that's okay.”
Desire to help others	21 (64%)	P36 (Y1) “Yeah, even if you get a diagnosis and you can’t do anything about it, the hope goes away, but even just doing the study even though you’re not getting anything back from it, in terms of getting better or anything like that is just gives you more of a positive attitude like you’re helping in some way. You’re helping yourself. You’re helping the other people.” P11 (Y2) “Other than what it does long-term for the general disease itself, but nothin’ for me initially. Unless I start to see, “Hey, you need to do this or do that.” Feedback from this, I guess would be—” P17 (Y2) “Well, I don’t see any—that's kind of a hard question. ‘Cause I don’t see any results or any assessments because it all goes for you. That's not a benefit to me. If I were to see something, if you would use it—market it for me as a consumer, and say you can monitor your tremors or any other symptom, and I have access to seeing results, then yes.” P22 (Y3) “That's the whole point of the—of my participation, I feel [to do it for research purposes].”
Perceived benefits
Symptom monitoring	18 (55%)	P14 (Y2) “Well, if it's long term it would be well ‘cause my doctor's over an hour drive away, so then not only is it a long drive, but my husband has to go because I can’t do that long drive. Being able to get—being able for my doctor to see any progression good or bad, whether the medicine's working or whether the medicine's not working or whether it's getting worse, without having to go into the doctor, into the office every single time is huge.” P19 (Y2) “I think maybe the most important thing is that you’re able to see your progression on your own, in between those six-month appointments with your neurologist and just keep a better eye on it.”
Understanding symptoms	11 (33%)	P29 (Y2) “I think it's a great way of breaking everything down and finding out what really is going on. It just condenses everything and makes it simpler to understand.” P13 (Y3) “It's discovering myself, my symptom. If I don’t do this kinda test, I don’t know anything about. It's for me to discover myself…Since I involved this program, it's good for me to discover myself. You know that. I'm not just do the exercise every day, but discover myself, what's my symptom, and what's my way going. It's been helpful for this study.”
Engaging in therapeutic conversation	6 (18%)	P30 (Y4) “And it's a nice change from—you know, ‘cause the other thing, just sidebar, is doing this stuff—I’m doing it all by myself. I don’t have anybody to interact with unless when I—except for what I was doing at < University>… But a lot of things, it's in isolation, so I find it helpful to have more interaction.” P36 (Y4) “Just amazing to me to be able to talk to somebody else who can articulate everything that I'm going through. I never get a chance to talk to people. People think Parkinson's is tremor and that's it. To be able to talk to somebody who actually understands that you’re going through a lot more.”

In the case of the WATCH-PD qualitative study, participants commented that receiving the symptom maps each year not only helped them feel connected and valued but also provided incentive for ongoing study participation (76%). Participants noted they derived some benefit, including the ability to monitor and better understand their PD symptoms from their yearly symptom maps and the opportunity to engage in therapeutic conversations about their PD experience during the creation of their symptom maps.

P28 (at Year 4) “It's the connectedness and the fact that you value our opinions. We’re not just a bunch of people in a clinical trial. We’re not just a bunch of diseased people with something wrong with them who can help you… That's not something that we encounter a ton. Like I said, I've probably been in 10 different clinical trials and this is the only one where I feel that this has happened…You gave people some value.”

Discussion

This study is one of the first to explore participants’ perceptions about return of research results in a digital monitoring study for Parkinson's. Specifically, we found that sharing personal symptom maps with participants as a PDF via secure email was simple, accessible, and well-received, with no negative repercussions. Prior research has shown that receiving personal information promotes coping and informed decision making even when data may have no demonstrated clinical utility, as was the case here. ⁴⁴ Extending on this, we found that receiving personal results helped participants to better understand their own PD experience, communicate with others, and in some few cases contributed directly to clinical care by providing a record of which symptoms were most bothersome and meaningful to patients. Furthermore, we found that the very act of reciprocity through data sharing made participants feel heard and valued, and served as a motivating factor in study enrollment and retention, which also corresponds with prior literature.^2,17,32,44

It is commonly accepted that participants typically do not receive any direct benefit from research and participate because of a desire to help others and hope for the future. ⁴⁵ However, participants in this and other studies ⁴⁶ have expressed concerns with this inequitable exchange of information—in which they repeatedly give part of themselves to further science without any sort of personal return. Admittedly, most research is conducted for the purpose of contributing to generalized knowledge ¹⁷ and results are consequently targeted primarily towards scientific audiences.^10,17,19,46 Yet, many in the scientific community are starting to recognize an ethical obligation to give back directly to participants by sharing results where possible^2,17,19,44 and ethical guidelines such as the Declaration of Helsinki support reciprocity of information as part of meaningful engagement. ⁴⁰ In the current study, we only planned for sharing a single, simple subset of the total data collected and did not return any personal reports from the digital health technology monitoring. While participants clearly valued receiving the PDFs of their personal symptom maps and reported multiple benefits from this alone, they also expressed a strong desire for access to their digital data as well, which was not in our data sharing plan. Specifically, our participants wanted simple progress reports (generally annual or end of study) that could provide objective, understandable, and potentially actionable information in a format that could be uploaded to their electronic health record for clinician review, and that could be used to identify problem areas, take steps to slow progression, plan for the future, or simply reassess priorities. ⁴⁷

Prior research provides substantial evidence of participants’ desire for personal results, whether positive, negative, incidental,^3,5,16,44 or modifiable.^1,2 However, return of digital data creates unique challenges that must be addressed to make this reasonable and feasible.^20,34,36 Common risks surrounding return of genetic and other testing, such as potential for misinterpretation,^6,10 limited clinical utility,^13,15 lack of validation,^5,7,15 confidentiality issues,^10,11,48 and potential for distress^2,3 could be amplified for researchers working with digital data. For example, digital results often involve millions of decontextualized data points that must be translated to be intelligible or lay-friendly. Both clinical and lay interpretation requires estimation of normative patterns within predominantly experimental data, which could be subject to error. Other common concerns, such as breach of privacy,^10,20 loss of confidentiality, medicolegal discrimination, ¹⁵ or other social stigma,^10,16 while mentioned by some few in our sample, appear to be of less overall concern for participants than researchers.^25,33,45,49 However, concerns for potential harm to participants from disclosure remained of concern.

Larger studies, such as the recently renamed Parkinson's Precision Medicine Initiative – Return of research information initiative (PPMI RORI), have begun to address gaps in this area by systematically assessing the downstream implications of return of results for participants. Learnings to date suggest that disclosure of genetic and biological testing in Parkinson's, regardless of positive or negative implications, is generally well received with comparatively few participants regretting the disclosure. ³³ These programs follow strict disclosure protocols that likely mitigate potential impacts. While effective, such approaches are time and personnel intensive and broader scalability remains unknown.

In sum, it is evident from this and prior research what most participants engaged in Parkinson's research want. Thus, the issue at hand is not really whether to disclose at all, but how to achieve a maximally safe, suitable, and equitable exchange of information that balances participant and research needs.^3,8,18,44 This includes considering factors such as timing and frequency of disclosure, report content, and access to support services. It is also important to acknowledge that premature disclosure could adversely impact studies, altering natural progression and affecting primary outcomes, thus introducing bias that cannot be controlled for, ² especially in observational research which lacks randomization. In these cases, plans for delayed or systematic release of limited information may be necessary to protect study integrity.

Given all these factors, research teams aiming to share personal results with participants will need to decide what, how, when, and to whom data should be disclosed on a study-by-study basis and in consultation with scientific and participant advisory panels,^11,19,32 with attention to issues of culture, complexity of the data, cognitive status, health literacy, and consent of the participant population receiving the results.^11,12,48 This will help to ensure that reports are meaningful, accurate, comprehensible, and communicated in a way that minimizes harm^2,7,22,23,25 and supports wellbeing. ⁸ In some cases, it may be beneficial to have medical personnel available to disclose information and answer questions (e.g., genetic counselors,^22,25,26,33 physicians,^15,50 or other health providers),^15,28,32 whereas in other situations it may be appropriate to provide results via mail, email, text message, or online portals^3,32 with appropriate self-educational materials.^13,23,46,51 Timing of disclosure will likely vary based on what works best for a given study and participants. For instance – our participants and others have commented that sharing results early in disease might be overwhelming, whereas later stages might be of less benefit.^8,9,20 Advisory boards will also need to decide at what point to notify participants of health risks if individuals have opted not to receive results,^6,10,21 especially in situations where findings could be clinically significant, potentially actionable,^20,21 or point to a health issue that could be addressed to prevent harm. At the same time, it is important to recognized that notification, regardless of choice, might conflict with participants’ preferences to decide if, what, when, and how to receive results.^8,9,20,32 Consideration is needed to determine if results should be shared directly with participants or legal guardians ²⁸ or those with cognitive impairment^15,52 and whether results should be shared with healthcare providers. ²⁸ A follow-up plan to assess the psychological outcome of finding out the results should also be included.^28,32

Lastly, development of best practice guidelines for return of results in Parkinson's and other health research may be needed to support the ethical conduct of future studies. The Parkinson's Precision Medicine Initiative recently published the first framework as part of the Return of Research Information (RORI) web-based program, which specified seven key components from pre-consent education, consent for disclosure, post-disclosure education, counseling, and assessment. ³² While still in early phases of piloting testing, this framework represents a promising model to guide future work in this area. Additional work to test the applicability and feasibility of these approaches in other contexts may be warranted and help to promote the safe and equitable exchange of information in future research. Policy changes may also be needed within research institutions and funding agencies to explicitly promote and financially support return of individualized results in addition to standard plain language summaries of aggregate data.^17,46

Limitations

This qualitative study focused on subjective experiences and perceptions of returning individual research results. Due to limited sample diversity (higher literacy and predominantly White participants) findings may not be generalizable to the broader US or global populations, and we acknowledge perspectives might differ among racial, ethnic, cultural, and socioeconomic groups. ⁵³ Thus, findings should be interpreted carefully and generalized cautiously. For instance, others have found that disability and mortality related to PD are rising in East Asia and western Sub-Saharan Africa ⁵⁴ and the benefits and risks of research engagement and disclosure of results in these contexts could well differ from our sample. Furthermore, while we shared symptom maps, we did not return any digital data, and rather focused on exploring preferences to inform future work, including preferences for individual and aggregated digital reports.^1,2 Lastly, we did not explicitly measure the impact of receiving symptom maps; therefore, we were unable to compare differences between those who did and did not elect to receive maps or how people were affected by receiving their personal subjective data.

Conclusion

Participants engaged in Parkinson's research value the right to receive personal and aggregate-level research results, even if findings are unfavorable or not clinically actionable. Although sharing person-level digital data presents numerous logistical and ethical challenges, engaging participants as partners through transparent data sharing is an opportunity to strengthen trust, demonstrate respect for persons, and advance patient-centered research. Research institutions and funding agencies should consider the social implications and pursue opportunities to amend current research practices through increased resource allocation, training, guideline development, and policy change.