A Vision of Future Healthcare: Potential Opportunities and Risks of Systems Medicine from a Citizen and Patient Perspective—Results of a Qualitative Study
Abstract
:1. Introduction
2. Materials and Methods
2.1. Design
2.2. Participant Recruitment and Sample
2.3. Conducting the Focus Groups and Data Collection
- Answering a health questionnaire;
- Medical examinations (physical exam, lab values: blood, urine; diagnostic images: ECG, ultrasound, MRI);
- Genetic analysis (DNA analysis);
- Information on personal lifestyle (smoking status, diet, fitness, place of residence, working conditions).
- Nutritional status, fitness level, sleep patterns, and stress levels;
- Blood pressure and pulse.
- What are the perceived opportunities and risks of systems medicine based on the case vignette?
- Which arguments are used for or against the development and use of systems medicine?
- Which requirements and general conditions can be expected for the future development of systems medicine?
2.4. Data Analysis
3. Results
3.1. Participation in the Study
3.2. Future Image of Systems Medicine-Oriented Healthcare
Well, I find it more concerning than progressive, really—a little horror scenario.(FG 6 P: 121–121)
You become a slave to your own health because everything is all about technology.(FG 1 A: 80–80)
But on the other hand, it also looks more like that the human being is simply a resource to be kept alive and which has to be trimmed to keep themselves healthy so that so they can work.(FG 5 P: 151–151)
Essentially, the idea of the “transparent patient” (someone who lost privacy) also occurred to me.(FG 1 A: 76–76)
Monitored. A life determined and controlled by others—and both together in the overall view then—when I read this text.(FG3 A: 140–140)
The personal responsibility, that’s what I’m missing here, TOO. And I think that should be trained much more, instead of being taken away.(FG 2 A: 137–137)
And I’m just very afraid that every person would lose the basic trust in his/her body, because s/he then delegates everything to the technology and doesn’t really even listen to her/himself.(FG 1 A: 80–80)
And then at some point, they’ll say: Okay, we’ll investigate that. But don’t have any children now, they would just be a burden on our society.(FG4 A: 111–111)
Thus, the likelihood of such information packages being misused to the detriment of the patient in such a development, by whatever party, is much greater than the benefit.(FG 6 P 160314_0020: 135–135)
3.3. Arguments for and Against
3.3.1. Digitalization and the Use of Key Technologies
3.3.2. Openness to/Willingness to Use a Systems Medicine Approach
3.4. Ideas and Discourse on Prospects for Action
3.4.1. Understanding of Systems Medicine among the General Population
3.4.2. Financing of Systems Medicine-Oriented Healthcare Services
3.4.3. Use of Systems Medicine-Oriented Care Approaches in the Solidarity System
3.4.4. Data Protection and Security When Dealing with Big Data
3.4.5. Normative Implications
4. Discussion
4.1. A Vision of Systems Medicine-Oriented Healthcare in the Future
4.2. Arguments for and Against
4.3. Perspectives for Implemention
4.4. Limitations
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Total | Citizens | Patients 1 | |||||
---|---|---|---|---|---|---|---|
Participants | n | 32 | 22 | 10 | |||
Focus group rounds | n | 6 | 4 | 2 | |||
Gender | |||||||
Male | n (%) | 18 | 56.3% | 9 | 40.9% | 9 | 90.0% |
Female | n (%) | 14 | 43.8% | 13 | 59.1% | 1 | 10.0% |
Age group (years) | |||||||
18 to 25 | n (%) | 5 | 15.6% | 1 | 4.5% | 4 | 40.0% |
26 to 40 | n (%) | 11 | 34.4% | 5 | 22.7% | 6 | 60.0% |
41 to 55 | n (%) | 10 | 31.3% | 10 | 45.5% | 0 | 0.0% |
56 to 70 | n (%) | 4 | 12.5% | 4 | 18.2% | 0 | 0.0% |
≥71 | n (%) | 2 | 6.3% | 2 | 9.1% | 0 | 0.0% |
Age (years) | |||||||
Mean ± SD | 41.3 | ± 16.0 | 47.6 | ± 15.2 | 27.5 | ± 5.8 | |
Median | 38.0 | 47.5 | 27.0 | ||||
Min. | 18 | 24 | 18 | ||||
Max. | 78 | 78 | 35 | ||||
Smartphone user | |||||||
Yes | n (%) | 29 | 90.6% | 19 | 86.4% | 10 | 100.0% |
No | n (%) | 3 | 9.4% | 3 | 13.6% | 0 | 0.0% |
Experience with digital health (apps, wearables, and sensors) | |||||||
Yes | n (%) | 17 | 53.1% | 10 | 45.5% | 7 | 70.0% |
No | n (%) | 15 | 46.9% | 12 | 54.5% | 3 | 30.0% |
Rejection | n (%) | 8 | 25.0% | 7 | 31.8% | 1 | 10.0% |
Application conceivable | n (%) | 7 | 21.9% | 5 | 22.7% | 2 | 20.0% |
Digitalization and Use of Key Technologies | |||
Topic | Pro | Cons | Selected Quotes |
Electronic prescription | Complete documentation of medication Saving travel and waiting times | What I found quite good is that if you have now taken your last blood pressure tablet, you get an electronic prescription directly. I think that’s great. It saves me a trip to the doctor. (FG 3 A: 150–150) | |
Electronic health record | Availability across facilities and sectors Access to health-related information in emergency situations and for medical treatment Avoidance of duplicate examination Cost reduction | Unauthorized access to sensitive health data Misuse of sensitive health data | But I would just also see it in context with the specialists; that all the physicians I go to get the same information. (FG 1 A: 150–150) Well, the advantage of storing it centrally is… if I’m taken to hospital, for example, am unconscious… then they know straight away: Okay, he’s allergic to penicillin and other antibiotics. (FG 5 P: 189–189) The whole thing goes hand-in-hand with a reduction of costs, because duplicate examinations are avoided or that the patient sees numerous physicians. (FG 4 A: 80–80) |
Digital reminder function | Reminder to take medication Coordination of examination appointments Low-threshold technical solution | Monitoring and control via access authorization for third parties to one’s own diary | In terms of assistance…the whole tablet thing, making appointments—those are the kinds of things where I would say, these things are very low-threshold and they’re usable. (FG 3 A: 159–159) Well, that means they’re monitoring everything—they can even look at your diary, for example. And I think sometimes that’s going a bit too far. (FG 6 P: 112–112) |
Real-time monitoring in everyday life | Digital physician–patient communication anytime, anywhere Early warning system before decompensation or acute events; especially for (chronically) ill patients/seniors Support of self-management for chronically ill patients Low-threshold access in rural healthcare structures | Loss of quality of life Fear that a layperson may misinterpret these vital parameters Lack of knowledge to adequately assess one’s own health | However, if you need to talk, you could also connect this smartwatch with telemedicine, so that you can at least call the physician via it and then you have this contact with the physician. (FG4 A 151111_0012: 313–313) …, so, this acute situation, when you feel really bad, that you can just “click” and the emergency ambulance comes. (FG 2 A: 176–176) And you would see that very early on, if the person has diabetes and… derails, then you could counter that… (FG 5 P: 302–302) So when I think about patients who receive chemotherapy, it makes sense to have such a close control… (FG 1 A: 96–96) For rural physicians…, for patients who are now also older, who have no possibility to go to the physician and who now have complaints. (FG 3 A: 171–171) Yes. Exactly, if it comes to a permanent use of the watch and everybody gets every week “Don’t get so upset” or so on the watch and “Otherwise this disease will come,” of course a big part of the joy of life is lost. (FG 5 P: 151–151) So once the value is up a little bit, depending on what type they are, then that person immediately rushes to the physician, even though it may not be that acute. (FG 2 A: 180–180) |
Big data analytics | Optimal and individually tailored therapy Early identification of disease risks Precise diagnoses Individual risk profiling as an opportunity to influence a patient’s health or the course of the disease Supports the medical decision-making processes | Prediction of disease risks could lead to so-called self-fulfilling prophecy The concrete knowledge of one’s own disease risk/prognosis (individual risk profiling) is emotionally stressful Concerns that empathy and communication will be lost in the treatment process Reduction of people to their data Lack of trust in AI-based analysis methods for diagnoses and prognoses Lack of data and risk literacy | Selection of the drug based on the data. I think that’s good the drug has low side effects, is low dose and is specific against hypertension so if on the basis of this data evaluation, this drug is also is determined in the same way. (FG 1 A: 70–70) I don’t know what you can find out with this, but probably there will be more and more diseases, which you can perhaps determine relatively precisely in advance, the better this gene analysis becomes I would do it, too. (FG 6 P: 145–145) So, based on this scenario, I think that an individual therapy is possible for the patient, which is tailored to the patient.... This also has a prophylactic effect, because you can say in advance, what is the probability of a disease? (FG 4 A: 80–80) Yes, I also think that the physician is supported more by the fact that he gets more data from the person and can then also assess them more quickly. (FG 6 P: 298–298) It can also be that through the diagnosis, that someone says, “you will get cancer or depression with 90% probability,” that the person still talks himself into it and virtually prophesies it himself. (FG 5 P: 168–168) So I think that will be based even more on data and less on clinical view and empathy, so looking at the patient, just listening—because you make the big diagnosis in a quarter-hour conversation—in that time you’ve figured out half, at least, oh, 80, 90 percent of the diagnosis. (FG 2 A 151015_0021: 259–259) I don’t know how they calculate that … then I would worry a lot. And the depression would probably be there much faster. So I wouldn’t like that so much. (FG 6 FETZ 160314_0020: 131–131) |
Openness to/Willingness to Use Systems Medicine Techniques | |||
Topic | (Conditional) Acceptance | Rejection | Selected Quotes |
Utilization for own health (e.g., big data analytics, individual risk profiling) | Early diagnosis of diseases for effective health promotion and prevention As support for targeted prevention and treatment strategies for those with serious or chronic illnesses Coherent relationship between effort and benefit | Lack of conviction | Yes, I would also monitor from a healthy state, if that would help to FIND any serious diseases in advance and then also prevent them afterwards perhaps or counteract—why not? (FG 6 P 160314_0020: 165–165) Well, I could imagine, if I have an acute illness, for example, if I am now a cancer patient and thereby the future patients could benefit from it. (FG 5 P 151214_0019: 165–165) Okay, with me it would be diabetes. Definitely. I’d be open to that. (FG 2 A 151015_0021: 166–166) Okay. So, I can imagine that very well, if the risk-benefit ratio is appropriate and the effort is right. (FG 1 A 150928_0007: 86–86) But for me it would also depend on the initial diagnosis. So, with a 90 percent risk of getting depression or a heart attack in the next 15 years, I’d accept quite a lot (laughs) already. (FG 5 P 151214_0019: 149–149) Well, I can’t imagine that at all in that sense, even if I could influence it. So, I think I’m perhaps still very bourgeois and old school. (FG4 A 151111_0012: 94–94) |
Sharing anonymized health data (big data) for research | High potential for new insights | Rejection | Yes, I’d do it. (FG 2 A 151015_0021: 195–195) Same for me. I wouldn’t have any problem with it. (FG 6 P 160314_0020: 182–182) Yes, if there was some disease where I could help to develop something, then also, but otherwise it would have to have then already really relevance. (FG 1 A 150928_0007: 122–122) I wouldn’t do it. (FG4 A 151111_0012: 163–163) |
Requirements and Conditions for Implementation | |||
---|---|---|---|
Topic | Area of Action | Ideas/Discourse | Selected Quotes |
Understanding of systems medicine in the general population | Digital health literacy Decision-making sovereignty and competencies in dealing with key technologies | New professional domains Knowledge promotion in schools (e-health literacy) | Maybe there is a person who is already there with the physician, who can explain it to you. That maybe there’s an extra room where you can talk to someone and get the information. (FG 2 A 151015_0021: 316–316) Trained staff that knows about this product and can explain it to me; if I have a chronic condition, I might have to use a device. (FG3 A 151029_0023: 331–331) Well, the health insurance companies should inform their members about new developments. (FG 6 P 160314_0020: 290–290) |
Financing of systems medicine- oriented healthcare services | Financial strategy | Financing from state/tax money Financing by the private sector Solidarity-based financing | First of all, a huge amount of money has to come in to get the system up and running. The state would have to pay for that. (FG 6 P 160314_0020: 208–208) I’d say the pharmaceuticals industry could do it, too. (FG4 A 151111_0012: 189–189) Well, for me it seems pretty obvious that the health insurance companies SHOULD cover a large part of the costs because they should have had some thoughts in advance about how useful the whole thing is. (FG 1 A 150928_0007: 130–130) |
Use of systems medicine- oriented care approaches in the solidarity system | Incentives for taking individual responsibility for health | Incentives via health insurance premium (bonus) Sanctions via health insurance premium (malus) | They need to pay a higher health insurance premium. That’s the only way they’ll get people on board. (FG4 A 151111_0012: 325–325) I think that’s okay if those who make a little more effort and do more sports and also do a little bit for their health, that they just get a bonus on top of that. Maybe several bonus levels. (FG 6 P 160314_0020: 213–213) I don’t like the idea of the bonus system either. I think it gives wrong incentives to always choose the health insurance companies that give more bonus. And then more and more sick people are pushed into insurance companies that offer substandard coverage. (FG 2 A 151015_0021: 381–381) But I don’t think that’s good if you then increase the premium just because you say I don’t want that. (FG 2 A 151015_0021: 403–403) It may be, of course, if in 10, 20 years certain diseases, for whatever reason, are now accumulating, that in the specific case they may then sanction unwilling patients in some way. (FG 6 P 160314_0020: 212–212) |
Willingness to pay and coverage of costs | Co-payment Freedom of choice Full cost coverage | So, if that had a really big benefit, yes, I would pay for it; but I don’t want to be financially overburdened. (FG 5 P 151214_0019: 382–382) In my opinion, that is very individual. Everyone has to know for themselves how much they are worth to themselves (laughs), as far as health is concerned, let’s put it that way. (FG 1 A 150928_0007: 145–145) Well, I wouldn’t want to pay anything on top of that either. I wouldn’t have any insight into that either. (FG 2 A 151015_0021: 383–383) | |
Data protection and security for the management of big data | Data protection and security | IT infrastructures with the highest security standards Cyberattacks and data misuse Access control Cloud solutions | The only thing that is certain is that nothing is secure. You may be able to secure that temporarily somehow, but in the long run, there is no system that you can’t crack. (FG 2 A 151015_0021: 193–193) But otherwise, I think it’s not a bad idea to say: This is somehow stored with the GP and he ADMINISTRATES it, so to speak, and then passes it on. That would be the safest method for me, safer than that it wanders around somewhere, I don’t know, yes, in a cloud or something. (FG 1 A 150928_0007: 175–175) The way I see it, the greatest benefit also comes with the greatest risk. I mean, if it’s stored centrally, that is where it can be most beneficial, but that’s also the situation with the most risk... And it’s just not possible to make something like that 100 percent secure. (FG 5 P 151214_0019: 271–271) |
Normative implications | Autonomy, privacy, and (informational) self-determination | Responsibility for one’s own health Decision-making sovereignty for the utilization Right to self-determination (constitutional right (within Germany)) to the “free development of the personality” Art. 2, Para 1, Basic Law of the Federal Republic of Germany [GG]) Informational self-determination (German Basic Law: General right of personality Art. 2, Para 1, GG/Art. 1 Para 1, GG) and control over one’s own data (Art. 8, EU Charter of Fundamental Rights) | Everyone is responsible for themselves. And it depends on where that starts now. Whether it starts purely in prevention or whether it starts in therapy… And if someone doesn’t want that, that’s okay as well. It’s their decision, and their right. (FG 1 A 150928_000702.07.2020: 147–147) Well, I don’t think it would be at all acceptable to force it on people. (FG 5 P 151214_0019: 281–281) Exactly, people should be the masters of their data and the legislator must enforce this. Rigorously. Also, against others. (FG 2 A 151015_0021: 264–264) |
Equal opportunities and discrimination | Exclusivity of systems medical services Discrimination against people with low income Endangering of personal rights | Well, that’s where all the ethics come into play. One could also say that someone who has lived a healthy life before might have to pay less. But the question is: Does this exclude others? So, you will be confronted with many new problems. Then there is also the question of income: Does the person who earns more also have to pay more? So, I still see many, many question marks. (FG 1 A 150928_0007: 152–152) You are either left with the costs or you cannot take preventive action against your illness. And then I see the problem that it can also lead to exclusion in SOCIETY. You have the people who are, let’s say, motivated and also those who aren’t and do that. (FG 1 A 150928_0007: 148–148) Strictly speaking, that would be discrimination. That would be an infringement of personal rights. (FG 6 P 160314_0020: 212–212) | |
Welfare state principle | Legal right to healthcare Social consensus on sustainable and appropriate strategies for financing | I just wanted to say, this is, after all, enshrined in the Basic Law and also in the Social Law—we all have a right to preventive healthcare, whether we’ve got INSURANCE or not. (FG4 A 151111_0012: 330–330) We need a consensus there. Because the individual citizen can’t carry the financial burden. (FG3 A 151029_0023: 296–296) |
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Lemmen, C.; Simic, D.; Stock, S. A Vision of Future Healthcare: Potential Opportunities and Risks of Systems Medicine from a Citizen and Patient Perspective—Results of a Qualitative Study. Int. J. Environ. Res. Public Health 2021, 18, 9879. https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph18189879
Lemmen C, Simic D, Stock S. A Vision of Future Healthcare: Potential Opportunities and Risks of Systems Medicine from a Citizen and Patient Perspective—Results of a Qualitative Study. International Journal of Environmental Research and Public Health. 2021; 18(18):9879. https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph18189879
Chicago/Turabian StyleLemmen, Clarissa, Dusan Simic, and Stephanie Stock. 2021. "A Vision of Future Healthcare: Potential Opportunities and Risks of Systems Medicine from a Citizen and Patient Perspective—Results of a Qualitative Study" International Journal of Environmental Research and Public Health 18, no. 18: 9879. https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph18189879