In the GPOC Survey there were clear majorities worldwide from two thirds’ to over 90% consensus, throughout all measured twelve core facets. The fact that we received an excellent response from 100% of the 196 states and 18 organisations, with significant results across the clusters adds weight to the survey.
The present GPOC Survey was further supported by a systematic review and meta-analysis for GPOC modelling for future research of an ideal cloud-based solution. (CROSSREF META).
The 2030 Agenda for UN Sustainable Development Goals (SDG) and aims for a global partnership.25 A GPOC as could impact these as depicted in Figure 3. It could identify the true costs of healthcare and determine economic growth (SDG #8) and give early warnings. According to close to six out of seven respondents (84%), it would also have environmental benefits.
No global health communication platform currently exists. It would need to ensure privacy and consent. During the recent COVID-19-pandemic it was discussed to design a global monitoring platform, achievable in a centralised or decentralised way.6
Centralised systems can neither adapt to the globalisation of vast volumes of siloed patient information, nor support global PHR data volumes. Hence an optimal use of decentralised PHRs could help prevent global health information decohesion and have a major impact on global health.7 GPOCs could therefore facilitate better health (SDG #3) on multiple levels. These range from improved pandemic tracking, global health platforms, overviews, medical research, patient empowerment, interaction and education. GPOC would also impact innovation (SDG #9) with AI, eHealth, and research. It may enable epidemiological monitoring of pandemics and malnutrition (SDG #2) and give health empowerment to fulfil the goal of no poverty (SGD #1).
According to the survey three out of four respondents agreed that having access to their own/their family's medical information would have resulted in better healthcare insights. Moreover, the majority deemed it is their human right to co-own their medical record, to gain insights. Notably, participants would be willing to share their PHRs for research, if they got paid for it. Here it is worth noting all the survey statements were in first person singular. Separate legislations for leaders and people are hence hard to motivate. Possibly GPOC may also improve health education in the population. (SDG #4) and improved healthcare (SDG #3).
The current PHRs are expensive and non-interactive, and studies have highlighted their bad design that causes health worker burnout. A well designed PHR should be simple, to allow users to manage and share data. Others further note that sharing can be to family17, 25-31 and friends5, 30 and to a professional17, 28-30 researcher,29 pharmacist,29 insurance companies.28, 29 As we identified in our survey, half of the respondents advocated for sharing with doctors in their home country, doctors or healthcare providers abroad when travelling (30%).
Economically, the main cloud companies are considered to be generating significant profits without incentivizing patients for the use of their datasets. PHRs outsourced to third-party cloud service providers can bring severe security issues and increase the risk of malicious usage and leaks. Clearly, concerns surface in relation to reports on the pseudo-consent given by patients for their data. This might lead to psychological profiling of patients thereby influencing patient purchasing habits. Fairly surprising, publicly available non-PHR data, can now also be used to profile and gain healthcare insights through artificial intelligence, prompting policymakers to consider regulation.32 A GPOC would eliminate some of these issues, foster an evidence-based approach and allow us to study the economic impacts of data-driven information co-ownership. The survey found that a clear majority (73%) preferred the described GPOC Foundation and that 75% agreed with the suggested GPOC structure. We further explored the creation of a GPOC foundation as a consensus solution. Furthermore, delegates at the GPOC Summit discussed the ethics and legality of information misuse without any compensation to the patient (CROSSREF SUMMIT).
Hitherto, no current regulatory, consensus systems existed to allow an effective patient inclusive global platform. We show that it is possible to create a GPOC model and that a majority of nations, and major international health organizations, support its development. A GPOC foundation has never been considered and cannot be traced anywhere in the scientific literature. We have further explored the ethical and regulatory requirements for a GPOC, and we have suggested that patient co-ownership of health data could possibly be considered a new human right. (CROSSREF ETHICO-LEGAL).
In the survey, 89% regarded it to be a human right to co-own their PHR with their healthcare provider, with less than 5% disagreeing, and 78% agreed that co-ownership should be with the government. Whereas disagreement with government involvement in the co-ownership concept peaked at of 13%. And 85% indicated that their human right to PHR co-ownership stemmed purely from their ability to gain insights. Since there seems to be a consensus among opinion leaders worldwide to consider the patients’ co-ownership of their health data as a new human right, will this affect the UN charter, i.e., will we have a new human right entity?
Patient-cantered care is transitioning towards co-management and the development of personal health records in a way that can empower the patient to also be accountable and responsible for their health and to freely access their records. Through this, clinicians can progress discussions with patients and enable details to be clarified and to ensure effective care. Patients now access vast repositories from other online sources in support of their own decision-making of whether to see a clinician. Clinicians may be unhappy with patients coming to consultations with their own ideas about their illness.33 However, current models for management of medical information undergo further reform, altering clinician-patient relationships, improving information accessibility and bringing about transparency and trust.
New technologies are now available for all to support clinical decision making with the patient’s involvement.34 With these technologies and AI-empowered PHRs, we enter an era of deep medicine, making healthcare more human.35
PHRs are legally binding medical documents. It is the clinician’s responsibility to ensure the accurate documentation of findings to safeguard practice, allow continuity and reduce litigation. New interaction scenarios emerge. Who becomes responsible if there is a data breach or when new information is updated, is it the doctor or the patient? Who amends any errors in the record and how is this reviewed, and probity facilitated to avoid legal repercussions? Currently this is not accepted by most healthcare systems. However, data protection regulations with other ethico-legal challenges and practical considerations provide many compelling arguments for considering new PHR models for health data management.
A clear nine out of ten majority wished to know details about security breaches, including the identity of the intruder. Three fourths meant that PHR access affected their healthcare in a positive direction, with increased insights. Since the state’s opinions leaders have these clear ideas about security, right and access, it might affect legislation in the foreseeable future.
Most participants, 70%, did not wish for companies to use their PHRs freely, without them being asked to give consent. There was very strong resistance, 91%, to letting companies earn money on PHRs. Hence, this resistance may be mirrored in future regulations.
A majority wished to contribute to medical research, if it were anonymous (85%), if they consented (93%) and if they got paid for it - for instance 47% wanted payment to participate, and 41% disagreed. To a lesser extent than for medical research, the participants were willing to contribute to non-medical research, if it were anonymous (60%), if they consented (67%) and if they would be paid (46%). The difference for non-medical research is more pronounced. When asked about non-medical research without their consent, 85% disagreed, 70% disagreed with this research if their details would not be kept anonymous and 61% disagreed with this research if they would not be paid. Therefore, it may be anticipated that this will be reflected in future patients’ rights and regulations on reimbursement for the use of patients’ PHR contents. Maybe we will see a micro-flow of payment to patients when PHRs are used for research?
A global patient co-owned and interconnected cloud would facilitate a large research substrate. The GPOC survey has shown the willingness to participate, share and get paid for such research. Moreover, the willingness to share data with family, professionals, friends and healthcare providers has also been demonstrated. There is now a new online service paradigm, which permits its users to share their health data.36 Modern PHR software allows patients or caregivers to exchange or share their health data with others, e.g., other patients or healthcare professionals. The suggested co-ownership would also give the patient the right to migrate with the PHR contents and share it with those deemed relevant. Especially in zones where people are displaced or are travelling globally, there is a need to facilitate the cross-border movement of the PHR.
The currently siloed healthcare data limits development of large pipelines for global AI for health. If patients can appropriately opt-in and consent to sharing their PHR content for insight discovery and be compensated for it,10 it would be more in line with a GPOC concept. Increased patient involvement might have impact on the fact that now 20% of patients report finding a mistake in their PHRs, where 40% of these were regarded as serious errors.37
Lastly, the exponentially growing internet energy consumption is predicted to reach over half of the world's energy output in the early 2030s, The vast amount of data in a global PHR cloud will be a large contributor, as was evidenced by the World Health Organisation (WHO) Third Global Survey on eHealth in 2015 (GOE_Q144).1
To support the survey presented here and the systematic review and meta-analysis (CROSSREF META), we also investigated the regulatory, legal, and ethical foundations (CROSSREF ETHICO-LEGAL), further discussed at the GPOC Delphi-style summit. (CROSSREF SUMMIT). The technical aspects, with a global sandboxed model and an economic model, where we demonstrated how a GPOC could be used to calculate the true economic impacts of healthcare. (CROSSREF ECOTECH).