So people think like this? And there are no side-effects of ayurvedic medicines. There is benefit, but usually little. But people trust allopathy more. All the private providers felt that the facilities and care in the public sector were poorer than in the private sector. However, they did trust the competence of their peers in the public services. Two or three colleagues of mine are there.. One is a gynaecologist. The service users had an equal amount of confidence in the competence of the doctors working in the public sector. So you say that if you go to a public facility, you will save money, but does that mean that the doctors there are good?
The doctors are good … they are good. Yes, the doctors are good. Why do you say so? Doctors there are good. Now you see … how it is.. What exactly do you mean…. Means more educated … maybe more experienced. They have qualifications, they have experience. The private providers were aware of the operational and managerial constraints under which public providers work. One of them pointed out that this situation made matters worse for those who could not afford private services. The poor class is actually … the poor patients are most worst sufferers in all this system.
One of the private providers felt that public services used to be better and that poor management had led to the deterioration over the last two to three decades. That was how it was with public services then. Now … what has happened.. People in a public hospital do not put their hearts into their work.. The public provider mentioned that working in the public services had its own challenges, including, but not limited to, the fact that people considered these services inferior.
They come here, they pay only 10 rupees… and whatever the general medicine we give.. We know they go outside and throw the medicines … They feel that it is such a low level means the medicines must not be good, the doctors must not be good whatever their ideas are…There are some people who absolutely go outside and throw the medicines.
Many informants, other than the service users, commented that there had been an erosion in trust, as well as in honesty of intent, at the level of society at large. They felt that relations of trust in the health system must be examined in this context. So this is an aspect of it. I have seen it with my own eyes — people prostrating in front of doctors my father.. Many informants, including some doctors, were of the view that the widening gulf between doctors and their patients — particularly in terms of money — was an important reason for the erosion of trust and deterioration of the relations between them.
Speaking about the matter in the context of the widening economic inequalities, the politician said:. As inequalities increase, it is all about economic inequalities …. It will become difficult for everybody. The service users, however, seemed to view the situation differently. While all of them recognised that there had been a decline in trust in various spheres of public and social life state, judiciary, police and fellow citizens , they did not think that the overall societal situation had a bearing on trust in the healthcare system.
Probing this matter did not yield much insight into the effect of the societal situation on the trustworthiness of the health system or the other relations within the system. This consisted of an examination of the nature of such relations and what influences the shape of these relations. It is problematic to explore the subject of trust relations in Indian society as it is not considered morally or culturally acceptable to say that one does not trust someone.
For this reason, our informants were somewhat hesitant to make allegations or moral judgments about others. The only exception was the private providers, who expressed their views on the untrustworthiness of the public regulatory authorities unequivocally. The Indian people have had a long tradition of expressing anti-establishment views openly. The healthcare providers, private and public alike, were open to talking about their perception of their own trustworthiness and their general experience with relations of trust. However, while they acknowledged that there was growing and widespread distrust, they distanced themselves individually from this state of affairs.
A greater and more nuanced insight into this can form the basis for developing interventions. The private providers had no doubts about the trustworthiness of colleagues whom they knew or knew of. They expressed frustration both at their own inability to do anything about it and about the fact that not much was being done about it. Similarly, the representative of the professional body expressed a sense of inevitability and helplessness about the situation.
While all the providers held that trust had to be earned and be maintained, they were unhappy with the erosion of blind trust in the profession. The practitioners of modern medicine spoke of stress due to challenges or threats to their professional power, discretion and privilege. They faced stress because of the confusion created perhaps by the challenges to their historically transmitted identity, which was constructed during training and regularly reinforced by society. The confusion was complicated further by the fact that the expectation of a privileged status, hitherto taken for granted, was being simultaneously upheld and challenged by societal actors and institutions.
This may also reflect the difference or lack of close fit between the levels and perceptions of trust in the health system as an institution and trust relations at the interpersonal level between practitioner and patient. Relations between private providers and regulators were characterised by a mutual lack of trust. Regulators seemed to view private providers as driven by money and fair game for extortion. Private providers felt that regulators used the regulations as a pretext to extort money. We must critically examine the lack of faith that both medical professionals and communities have in current regulatory responses to healthcare delivery problems.
If we gain a better understanding of the situation, we can identify opportunities to rebuild trust in these important relationships, and better manage healthcare services.
Trust in the relations between private and public providers appeared to be based on the competence of the provider. While public providers did not trust the intent of the larger body of their peers working in the private sector, they did trust specific providers on the basis of their personal experience and familiarity with them.
Amongst doctors who had graduated from public medical colleges, there was an element of distrust about both the financial motives, and to some extent the competence, of doctors graduating from private medical colleges. These views were justified with the oft repeated, but suppositious arguments that pressures to recoup costs were the likely driver of the alleged money centeredness.
Trust relations between providers of different systems of medicine appeared to be based on earned trust, earned through interaction and relations developed on a personal basis, and an individual matter; while the ayurveda and homeopathy providers trusted the competence of the allopathy providers and the system of allopathic medicine to deliver results, this sense was not reciprocated by the allopaths, who were ambivalent about the legitimacy of other systems of medicine. In addition, patients tended to trust practitioners who used modern medical technology in their practice which may have led to a preference for allopathic medicine.
This evidence raises questions about the viability of any policies aimed at integrating different systems of medicine.
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Further research needs to explore these questions in more detail as the story emerging from this study contained mixed messages about the relationship between allopathic medicine and ayurveda and homeopathy, with a lack of trust emerging at the systems level but harmonious relations apparent at the interpersonal level. It was expected that caste would be reported as an influence in trust relations. However, all the informants, including the service users, shrugged the question off without much hesitation, though the interviews were conducted by locals and the caste question was asked in a frank and open way.
Patients explicitly stated that trustworthiness was related to competence and familiarity. It could be that in the context of healthcare — a major sphere of social life — people no longer repose trust in providers or make care-seeking decisions on the basis of caste. However, it has been argued that caste has been invisibilised and has escaped scrutiny in Indian society Further research is needed to explore this question and a more sensitive methodology must be developed to get beneath the invisibility of caste and its possible influence on trust in the health system.
This study is perhaps the first to examine trust relations amongst those on the supply side of the health system in India and, more broadly, in low and middle income countries, particularly the situation of private care providers. Given the diversity of actors involved in healthcare provision in India, and the pre-dominant role played by private care providers, this study is pertinent as it exposes key issues vis-a-vis trust relations of private providers; in doing so it also sets the stage for innovative areas of research with potentially important implications for population health outcomes.
Beyond India, this study is also one of the few empirical investigations on trust relations as experienced by healthcare providers The study has its limitations. Providers working as employees in private corporate hospitals were not interviewed, nor were their managers.
Given the growing corporatisation of healthcare delivery, they need to be understood better. The private providers interviewed were all established practitioners, and all general practitioners; their views on the state of trust relations within the health system might be different from those of private providers who are younger, or have a referral-based or specialist practice. All service user informants were women, and it is possible that men have different views and experiences and that trust relation is a gendered phenomenon. Similarly, all service user informants were from the middle to lower middle class, and urban; rural, poorer citizens may have different points of view.
The study was conducted in one part of India, and some of the findings may not apply nationally and across regions. Informants, particularly the non-medical professionals, referred to different levels of care when expressing their views; one can expect the nature of trust relations to vary across primary care services, higher levels of services, and diagnostic services; this study was unable to disentangle this post facto, and its scope was in any case insufficient to cover these possible differences.
However, this was beyond the scope of our work. In conclusion, this exploratory study exposes potentially important issues around the state of trust relations in the supply side of the health system, particularly in the stewardship of the healthcare system in India; these deserve further and more extensive examination. Online submission is not open so please mail submissions to: Toggle navigation Indian Journal of Medical Ethics. How to cite item. Introduction The latest report on the global burden of disease shows that India accounts for around Trust and its importance in the health system Trust is recognised as significant for providing effective healthcare across national systems and provider contexts 13 , 14 , Trust relations in healthcare in India — An exploratory study.
Findings The first part of this section consists of a discussion of themes related to the changing context of healthcare in India. Changing nature of healthcare: Marketisation of healthcare According to our informants, market forces are aligned in such a way today that the family doctor-based care model is becoming increasingly unsustainable in major urban settings. Marketisation of medical education: Importance of personal manner in the building of trust The importance of building and cultivating trust and reputations — with patients and within communities — emerged as a major theme.
Breakdown of trust between regulators and providers Private providers disapproved of the regulatory interventions that they were now subject to. Asked about their relations with practitioners of modern medicine, including whether they referred patients to these practitioners, the homeopathy practitioner responded: Relationship between public and private providers All the private providers felt that the facilities and care in the public sector were poorer than in the private sector.
Private provider 3 The service users had an equal amount of confidence in the competence of the doctors working in the public sector. Overall decline in trust in society at large? Speaking about the matter in the context of the widening economic inequalities, the politician said: Strengths and limitations of the study This study is perhaps the first to examine trust relations amongst those on the supply side of the health system in India and, more broadly, in low and middle income countries, particularly the situation of private care providers. Global Burden of Disease. Institute for Health Metrics and Evaluation; IDS Working Paper Barua N, Pandav CS.
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Trust and health worker performance: Calnan M, Rowe R. Researching trust relations in health care: J Health Organ Manag. Connell NA, Mannion R. Conceptualisations of trust in the organisational literature: Some indicators from a complementary perspective. Examining trust in health care: Gopichandran V, Chetlapalli SK. Dimensions and determinants of trust in health care in resource poor settings—a qualitative exploration. Factors influencing trust in doctors: Using the framework method for the analysis of qualitative data in multi-disciplinary health research. Bauman G, Gingrich A, eds.
Patient-physician trust among adults of rural Tamil Nadu: Our watchdog sleeps, and will not be awakened. Why I returned to the UK. Professional codes, dual loyalties and the spotlight on corruption. The health of India: Gerald Gartlehner et al. Why we resigned , September 15, A moral governance crisis: The growing lack of democratic collaboration and scientific pluralism in Cochrane. Doctors seek changes to sex test rules. Why does the UGC still use them? The Wire, April 18, The elephant at the workplace, Indiatoday. Over 24, clinical trial deaths and SAEs in India in ten years.
The Sunday Guardian, New Delhi: Indian Medical Association asks that doctors be excused from participating in execution of convicts. Chennai Medical students unlikely to be altruistic doctors: Times of India, Chennai edition: Hiding vaccine-related deaths with semantic sleight-of-hand. Govt washes hands of post-vaccination deaths. WHO's revised norms are allowing the use of unsafe vaccines. Doctors turn sales representatives in live surgery telecasts.
Will mandatory sex-determination prevent sex-selective abortions or endanger pregnant women? Who will own your data when your electronic heath records are linked to Adhaar? A new bill on public health emergencies allows for dubious restrictions of citizens' liberties. March 25, http: Doctors allege illegal organ trade on the rise in major hospitals too. Telecast November 15, Lessons from East Delhi , Scroll.
Why an obscure Indian journal has an impressive — and growing — international stature Statnews. Indian Psychiatric Society warns doctors against sexual relations with patients. Dr Death practised for nine years after being blacklisted. New governmant regulations water down clinical trial safety norms. Better buy than die? The unfortunate enduring saga of organ sales in India. Should hospitals give patients unbanked blood to save their lives? Why it is difficult to cut out organ black marketeers. Unethical cancer trials in India may have led to pointless deaths, claims American doctor.
February 8, http: Spotlight on living, dying and dignity. Forget euthanasia, even 'do not resuscitate' option not available. Doctors do avoidable surgeries to meet corporate targets. Access to pain relief is India's ethical obligation.: Indian journal of medical ethics. Doctors for ethical practices Moneylife. Doctors give drugs without knowing side-effects: This could lead to more people from different fields looking at health data in new ways, both medically-trained professionals and others, to the possible benefit of all. More rigorous large-scale quantitative analysis could possibly inform the discovery and delivery of health care services.
The role of the patient is starting to shift from being a minimally-informed advice recipient to an active participant, instigating collaborator, information sharer, peer leader and self-tracker engaged in participative medicine; a transition is underway from paternalistic health care to partnership models [ 28 , 29 ]. The small but growing consumer health communities examined in this paper suggest that individuals are becoming more engaged in a variety of self-testing and self-management of conditions, symptoms, genomics and blood biomarkers, behaviors and personal environmental factors.
Individuals could dramatically expand their use of web-based tools, devices and health social networking platforms as their awareness increases, costs drop, financial incentives arise and automated tools proliferate. Current and future self-measurement and self-experimentation projects could be formalized into more structured programs, possibly generating even more value in collaboration with others as consumers develop relationships with health social network peers and propose, lead and participate in self-run patient studies.
As data owners and administrators, consumers may be starting to maintain digital files of their medical history either on home computers or by entering the data into available Internet-based electronic medical records EMRs to the extent possible given website functionality and personal comfort with online security. The digitized information may include any available documentation from previous doctor visits, a medication history, genomic scans and other biomarker tests, a weight, exercise and sleep history, health journaling information, self-tracking device input and any other relevant information.
Eventually, health social networks, health portals examples: These websites could orchestrate EMR access permissions to doctors and other parties. Consumers may be evaluating all of their traditional health interactions, for example, identifying the opportunity to approach employers or health insurers for discounts for being healthy, particularly unified as a health social network buying group. Thus far insurance and other aspects of health care have been a one-way street with penalties for pre-existing and negative conditions but no reward or incentive for healthy behavior.
Insurance companies have detailed knowledge of patient costs; U. Healthy behavior could be demonstrated easily with regular biometric readings such as weight, cholesterol, BMI, blood pressure and other data points. Examples of this idea in implementation include U. Just as the role of the patient is evolving, so too is that of the physician. The physician may need to adapt to both changing patient behavior and dramatic industry shifts. In interaction with some patient segments, a physician is starting to become a care consultant, co-creator and collaborator, generating health plans together with patients using the new tools [ 32 ].
This may involve overcoming the challenge that physicians possibly lack the skills to share health care information and decision-making with patients [ 33 ]. Shared care may have previously connoted greater linkage between health system professionals for coordinated patient treatment [ 35 ] but is now also used to mean a direct partnering between physician and patient [ 36 ].
Some physicians are starting to understand how health care models could change and seeing ways to offer value to patient-collaborators in the new system. There is a small but increasing number of specialty physicians at private clinics providing a variety of new health services including detailed genomic and blood biomarker analysis and preventive intervention programs, for example Omicia http: In the intervening years before genomics and other biomarker diagnostics and treatments are proven and could be automatically administered via traditional health care channels, they will likely continue to be provided by private clinics as they are now.
Consumer demand and the number of clinics could grow, and some sort of services standardization and certification may be appropriate for successful providers to distinguish themselves. From the growth of medical content in blogs, wikis and other Internet tools such as Twitter http: A study of junior physicians in the U. The ScienceRoll Medicine 2. Some recent resources of note have included the Top 50 Health 2. As some patients are seeing potential health benefits in forgoing their privacy on health social networks, some physicians are also adjusting to a new transparency regime.
In the future, doctors could become as concerned about their public reputations as eBay sellers and others depending on online reputations [ 40 ]. Review sites for doctors with patient-entered data are proliferating Figure Peer-based health networks could be poised to become a powerful member of the health care ecosystem with an expanding role, possibly having influence in policy, ethics, regulation, research and finance.
It will be interesting to see how health social network identity develops and is expressed since a health social network is simultaneously an aggregation of individuals and an institution with its own leadership, goals and agenda. It is too early to forecast what will happen with health social networks, but PatientsLikeMe as the flagship example has an on-site research staff and appears to be quite involved in administering and orchestrating the patient community, with a collaborative stance towards traditional medicine.
Internet-expert Clay Shirky notes the progressive stages of social network activity which seem to be unfolding in lockstep in health social networks: In addition to external collective action, the internal peer support of health social networks could evolve into positive-impact peer pressure, for example, members competing to lower key biomarker scores like cholesterol and blood pressure, using third-party test uploads from LabCorp to measure and validate the results.
Health social networks could develop into large-scale online aggregated communities with market power, providing visibility into demanded research and remedies and directing and funding research priorities. Health social networks could become a key quantitative indicator and independent barometer of demand for medical research, a useful input to the research agenda-setting of governmental funding bodies such as the National Science Foundation NSF in the U.
One of the biggest potential benefits of health social networks could be in making long-tail medicine possible, allowing small communities to find each other via the Internet. The long-tail concept http: The cost structure of large pharmaceutical companies is just like that of brick-and-mortar stores and record companies; they need blockbuster products with significant sales.
Individual researchers, small to mid-size pharmaceutical companies and foundations could start to quantify demand for non-marquee health conditions and work on solutions collaboratively with health social network patient communities, possibly also funded by the patient communities. There are several ways that health social networks could exercise their power as market agents.
One idea is for health social network members to come together in aggregated buying groups for discounts and Request for Proposal RFP solicitations from vendors for health insurance, medical services, gym memberships, vitamin supplements and other health-related purchases. Health social networks could serve as the platform for virtual services such as on-demand physician consultation.
Another idea is for health social networks, in addition to their participation in regular clinical trials, to become involved with the ongoing testing of non-drug remedies such as supplements, vitamins, minerals, nutraceuticals, herbal remedies and other products; testing both contents claims and efficacy. This could work both ways; supplement companies could contract with health social networks for studies to discover and demonstrate the benefits of their products and health social networks could periodically review all large supplement providers, like Consumer Reports http: Studies would not need to be designed at the outset but could be derived from on-demand database queries to probe for connected factors and groups of patients with similar profiles.
Translational medicine, converting basic research findings to patient therapies, continues to be one of the greatest outstanding problems in medicine and health social networks might be able to be helpful here too. One way is by connecting researchers with health social networks such that there is more of a direct and continuous feedback loop between the needed research and the executed research. There could be an opportunity to connect researchers, medical professionals, patients, health social network representatives, industry analysts and other parties in Translational Medicine Advisory Boards, akin to the Technology Advisory Boards used by basic research institutions in the technology industry, to facilitate translational medicine.
Consumers are uniquely positioned to tackle some other key health care industry issues. Just as patients are the only ones who can avoid HIPAA privacy regulations and open source their own data to the benefit of the greater community, patients can skirt the social taboos that other health care ecosystem members may encounter regarding economic issues. Patient-driven health social networks could promulgate cost rationalization by demanding price lists from health service providers and backing consumer credit programs for health care debt such as those envisioned by Criterion Ventures [ 41 ].
Much of preventive medicine may continue to be non-reimbursed; one positive aspect of this is that providers would be forced to develop consumer-presentable health service offerings and pricing. Finally and on a more speculative note is one of the other major advancing fields of life sciences, synthetic biology, also known as bioengineering http: Essentially, synthetic biology is printing synthesized sequences of DNA after designing them by computer, possibly using the open source biological parts database http: This could be relevant to the future of patient-driven health care if individuals or health social networks were to promote the do-it-yourself home synthesis of test substances, for example printing measurement chemicals for blood and saliva tests used in the self-monitoring process.
Given the rate of advancement in DNA sequencing technology, it might be possible that whole genome scans become as normal as blood tests in the health system before laws like GINA are tested and a legal precedent is set regarding genetic discrimination. Economically, a trend is underway for employers to switch from traditional health plans to health savings accounts HSAs http: More than half of U. HSAs make end-users of health care services more aware of pricing and there is an ongoing debate about whether they produce better or worse health outcomes, but it is possible that consumers would be more efficient in their consumption of services behaving directly as rational economic agents.
To the extent possible, consumers may choose to put their HSA dollars to work in new ways, focusing on preventive medicine and other emerging patient-driven health care solutions. Employers could benefit by implementing HSAs together with employee health rebate incentives. Regulatory controversy, the struggle between the old medicine and the new medicine, has already been part of the emerging patient-driven health care landscape in that many direct-to-consumer products and services are unregulated.
Opined as initiated by the traditional medical establishment, in June , California served cease and desist orders to direct-to-consumer personalized genomics companies [ 43 ]. As of early July , apparently only five of thirteen such companies in California had complied with the order, arguing that they were not in infraction of any laws [ 44 ] and in August , two companies were licensed in California as genetic information services providers, as distinct from medical testing providers, 23andMe and Navigenics [ 45 ]. It will be interesting to see whether the traditional medical industry strikes a symbiotic or adversarial stance as additional patient-driven health care models emerge.
Regulation could continue to be a bottleneck. Agencies like the U. National Institutes of Health Clinical Trials website listed 65, clinical trials in process http: There could be even more of an effort to organize the process into different tiers with fewer requirements depending on the therapy type. New approval models with peer-based research and support components, analogous to those proposed for patents by Beth Novak http: Personalized medicine could trigger the need for more levels and types of cohort testing in both regulatory agency-approved clinical trials and open source patient-run clinical trials.
It may make sense to have a wider array of vertical test tiers to accommodate more alternatives to the full-blown clinical trial such as informed patient field studies, small-group phased experiments and data collection projects.
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Horizontally, there may need to be as many as exponentially more cohort studies to segment varying genetic, phenotypic biomarker and patient history data as the early drugs of personalized medicine, Imatinib and Tamoxifen, are starting to show. The clinical trials process could be expedited dramatically with patient-driven medicine. Health social networks can bring pre-aggregated patient registries and standardized digital data to clinical trial conductors.
Health social networks and clinical trial representatives can collaborate in their needs for electronic data collection, ensuring that the quantitative information needed for clinical trials already exists for all participating patients. Clinical trial pre-screening surveys can be administered easily through health social network websites.
Related to the quantitative shift in medicine, future drug approvals may require biosimulation modeling and analysis output in addition to live patient data as a standard application component; the use of biosimulation by regulators is already being explored as discussed in Section 2. The quantitative data repositories of health social networks could become a significant resource in the drug discovery process too as researchers start to be able to cross-reference large databases of genomes, biomarker readings and patient histories.
The ongoing self-tracking activities of health social network members might fit nicely with the needs of after-market drug studies. Patients are already logging their experience, adherence and side effects which could then be aggregated to be visible publicly on the Internet instead of collected in a more costly way and possibly presented in a legal but potentially biased way by pharmaceutical companies. In the future, personalized drug dosage could come to mean custom tuned for each individual per their own biomarker readings at the time of the dosing.
Smart dosing nanomedicine drug delivery systems could dynamically update dosage profiles over the life of the drug. What starts as a whole genome scan of each person could eventually lead to individuals having full electronic health models of themselves, updated automatically in near real-time per their biomarker readings. On-demand treatment biosimulations could be run with virtual patient models from Entelos, Optimata or others.
Individuals could open, review and adjust their 3D health models in virtual worlds such as Second Life http: A current example of such 3D models of the body is the virtual testis exhibit in Second Life http: All parties may face a sea change of adaptation in the coming era of genomic-based medicine. One of the most important dynamics in the transition to patient-driven health care could be the advent of health social networks as influence entities as they may increasingly conduct self-run clinical trials, wield market power through aggregated buying groups, serve as an indicator of market demand for medical research and possibly lead translational medicine.
Legal, economic and regulatory institutions too may need to innovate to manage the shift to genomic medicine and patient-driven health models. The future of clinical trials could mean much greater vertical and horizontal stratification with exponentially many cohorts. Clinical trials, drug discovery and after-market studies could be expedited by the growing public health databases of patient-contributed information.
The introduction posited that the life sciences field is changing in several important ways both content-wise and structurally. Emerging patient-driven health care models are influencing some of these changes and could contribute to shaping a positive future for life sciences and health care. Content-wise, one key life sciences change is the growth in information, both in the amount of general and scientific information, and in the type of information, as narrow and interdisciplinary scientific fields expand.
Patient-generated content in emerging health care models is adding a new category and dimension of information. Consumers are not just creating information but also helping to make it meaningful and navigable, first by organizing themselves and the information into knowledge communities. Second, at some websites, individuals creating or interacting with the data can help to stratify it with relevancy and abstraction layers by actively engaging in collaborative filtering, tagging, voting and other standard Internet community data management techniques or passively, by having their attention recorded as page views.
Third, individuals such as expert patients are becoming value-added health information resources themselves through their self-knowledge and community participation. Health social networks and other peer-based resources such as patient registries by condition could proliferate and be formalized into tools analogous to the Wikipedia which has emerged as a widely useful consumer-produced information resource.
Structurally, the life sciences field is changing in three ways, the concept of health, how science is being conducted, and the models by which health care is realized. In the first case, the notion of health is changing as patient-driven models help to expand the definition of health and health care as depicted in Figure 1.
Individuals may have the time, interest and utility to tinker with different tiers of the health concept, thinking creatively about and experimenting with cures, especially for pharmaceutically-uninteresting or complex orphan diseases, improving and resolving chronic conditions, measuring and reaching baseline normalization, increasing wellness, preventing disease and engaging in genetic and physical enhancement as possible. In the second case, how science is being conducted and who is conducting it is also being influenced by patient-driven health care models.
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Individuals can focus on personally-relevant aspects of health, formulating important and possibly novel areas of inquiry, collecting data about their experiences and finding others with similar interests and conditions with whom to collaborate and mobilize resources. Rather than forming a hypothesis at the outset, individuals may engage in self-tracking, analyzing the resulting data and using self-experimentation as a tool for improvement; for the individual, understanding the underlying mechanism may be irrelevant if desired outcomes are obtained. Mathematical modeling, simulation and synthetic biology are also redefining and adding to the way that science is being conducted by traditional professionals and could potentially have an even more powerful impact if they were to be made available in easy-to-use consumer offerings.
In the third case, the ways that health care is realized are also changing through patient-driven health care models. Early examples include health social networks, direct-to-consumer personalized medicine services, self-tracking communities and non-reimbursed clinics for preventive medicine and other interventions.
The creative exploration of individuals focusing on a much wider concept of health could further add to the value chain of health services, extending them from the traditional model of general diagnostic and urgent care providers with high expertise e. An interesting array of alternative models and entrepreneurial services could arise, for example on-demand physician consultation as a standard service, personalized genomics interpretation and intervention offerings as genetic information becomes more clinically relevant, and fully automated tools for personal quantified self-tracking and environmental monitoring.
The growing presence of patient-driven health care models may be central to the evolving health ecosystem. Individuals are starting to better manage their health, independently, with peers, in large aggregated online affinity communities and in consultative co-care with medical professionals. Tools, demographics and financial incentives may combine to accelerate the achievement of improved health outcomes for all ages. Individuals and groups of individuals as new classes of participants in the health ecosystem could be beneficial at many levels from the practical, inspiring the launch of resources, services and businesses, to the theoretical, helping to inform the general inquiry of health and to supplement the traditional scientific method with empirical data.
More health resources and alternatives are starting to be available, consumers can control more of their own data and are becoming empowered to make their own choices; traditional medicine is no longer the exclusive source of health solutions. The individual can obtain relevant information more readily and act upon it. Health information databases and patient registries by condition are emerging as a significant public resource. The emerging patient-driven technology-enabled health care models have focal points at every node of the wellness cycle, particularly at earlier stages, targeting prevention rather than therapy.
Uptake could advance quickly given the more open attitudes of younger generations regarding trust and privacy and their facility in using Internet models for information-seeking, communication and action-taking. Self-collected digital data could be an input to quantitative analysis, predictive outcomes and biosimulation.
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Consolidated reflection on reductionist self-measurement activities could be extrapolated into new perspectives such as a shift in the overall conceptualization of health, and the meaning of wellness to the individual and society. For both consumers and all manner of medical and public health and environmental research professionals, this could be a time of great opportunity. There is a potential chance to learn and apply the emerging models, to invent new tools, to reach out to a global peer audience in collaboration, to embrace technological change and to make progress on systemic challenges that may have previously appeared intractable.
National Center for Biotechnology Information , U. Published online Feb 5. Author information Article notes Copyright and License information Disclaimer. Received Jan 9; Accepted Feb 2. This article has been cited by other articles in PMC. Abstract A new class of patient-driven health care services is emerging to supplement and extend traditional health care delivery models and empower patient self-care. Patient-driven health care, health social networks, personalized medicine, quantified self-tracking, health care delivery, predictive health care, preventive health care, long-tail medicine, Internet, open source.
Introduction The life sciences field is advancing and changing in nearly every dimension, both content-wise and structurally. Open in a separate window. Quoted excerpts regarding the changing definition of health and heath care. Scope of Analysis This paper focuses primarily on one aspect of the broader shifts in life sciences, how health and health care are understood and realized, particularly through emerging patient-driven health care models.
Emerging Patient-Driven Health Care Models Three emerging patient-driven health care models are now discussed in detail: Health Social Networks 2. Health social networks introduction Social networks have become a powerful tool for bringing people with shared interests together to interact. Health social networks definition A health social network is a website where consumers may be able to find health resources at a number of different levels Figure 2. Services provided by health social networks This section has an in-depth review of the services provided by health social networks: Emotional support and information sharing The basic services offered by the majority of health social networks are a mix of emotional support and information sharing at no cost to registered site users.
Quantified self-tracking A third type of service offered by some health social networks examples: Clinical trials access A fourth type of service offered by some health social networks is information regarding clinical trials. List of health social networks A list of current health social networks is presented in Table 1 , organized into three categories: Consumer Personalized Medicine 2. Consumer personalized medicine introduction In the last several decades, advances in science have been enabling new paradigm understandings of biological life. Quoted excerpts regarding a systemic approach to personalized medicine.
Categories and types of consumer personalized medicine Four areas of consumer personalized medicine are discussed here: Personalized genomics Personalized genomics is the first and most important area to consider as a key input to consumer personalized medicine.
Direct-to-consumer blood and other biomarker tests The second area to measure in consumer personalized medicine is blood and other biomarker data. Environmental testing The third area to measure in consumer personalized medicine is environmental data, screening for body burden, the cumulative impact of exposure to toxic substances in the environment.
Predictive biosimulation A fourth area that could be increasingly important to consumer personalized medicine is predictive biosimulation. Quantified self-tracking definition Quantified self-tracking is the regular collection of any data that can be measured about the self such as biological, physical, behavioral or environmental information.
Categories and types of quantified self-tracking tools Focusing on the consumer self-tracking market, in addition to health social network-based self-tracking, there are a variety of other health monitoring websites and devices currently available. Health-related self-tracking websites and services. Service Function Trixie Tracker http: Customized health tracking via a speech transcription service website, device and iPhone application Keas http: Wearable self-tracking devices with automated data collection. Personal environmental monitoring tools: Discussion of Emerging Patient-Driven Health Care Models One mechanism changing how health and health care are understood and realized is patient-driven health care models, particularly health social networks, consumer personalized medicine and quantified self-tracking.
The Future of Health Care and the Evolving Health Care Delivery Model The main characteristic of the evolving health care delivery model is that it is starting to become more collaborative; moving to a co-diagnosis, co-care model between physicians, patients and other parties [ 23 ]. The Evolving Role of the Patient The role of the patient is starting to shift from being a minimally-informed advice recipient to an active participant, instigating collaborator, information sharer, peer leader and self-tracker engaged in participative medicine; a transition is underway from paternalistic health care to partnership models [ 28 , 29 ].
The Evolving Role of the Physician Just as the role of the patient is evolving, so too is that of the physician. Examples of publicly-available patient reviews of physicians Yelp. The Advent of Health Social Networks as Influence Entities Peer-based health networks could be poised to become a powerful member of the health care ecosystem with an expanding role, possibly having influence in policy, ethics, regulation, research and finance. The Future of Clinical Trials: Changing Drug Discovery and After-Market Studies The quantitative data repositories of health social networks could become a significant resource in the drug discovery process too as researchers start to be able to cross-reference large databases of genomes, biomarker readings and patient histories.
Conclusions The introduction posited that the life sciences field is changing in several important ways both content-wise and structurally. Summary and Opportunity The growing presence of patient-driven health care models may be central to the evolving health ecosystem. International Research and Development. The End of Theory: A Talk with Drew Endy. Online text from Edge: Patients as Partners Business Week http: Measuring function in advanced ALS: Fornai F, et al.
Lithium delays progression of amyotrophic lateral sclerosis. Premium genome mapping service. The scent of a woman and a man The Economist http: The New Examined Life: Why more people are spilling the statistics of their lives on the Web The Wall Street Journal http: What do we mean by partnership in making decisions about treatment?
Examining trust in healthcare: a multidisciplinary perspective
Gorman JM, den Braber M. Semantic Web Sparks Evolution of Health 2. Presented at the Health 2. April 12, ; pp. Tapscott D, Williams AD. Part 1 What will it take to create the ideal healthy home? Corporate wellness, Safeway style San Francisco Chronicle http: Charles C, Whelan T. Vogt E, Kuperberg J. Study of the ePatient as a provider of health content in the Internet. Presented at the Medicine 2. A Community of Practice. February 23, ; pp. Are patients swimming in a sea of health information? Or are they drowning in it The New York Times http: Medical education and building an on-line reputation in the world of web 2.
Online text, http: Support Center Support Center. Please review our privacy policy. Prostate Cancer Info Link http: Personal webpages to share health updates with family and friends. Medscape Physician Connect http: Canadian physician networking and collaboration tool. Online research, publishing and case collaboration with images and videos. Online surgical and health care video and webcast communication platform. Doctors learning from each other via short streaming video clips. Additional medical industry physician and scientist social networks: