The Association for Progressive Communications (APC) continues to see the Internet Governance Forum (IGF) – both as an annual global event and national, regional and intersessional processes and events – as the most significant multistakeholder platform for discussing internet governance and a critical piece in the internet governance and global digital cooperation ecosystems for bringing together key stakeholders for policy dialogue, collaboration, coordination, capacity building and networking, and as a platform to raise human rights concerns and contribute to shaping internet policies worldwide.

We want to express our appreciation to all who made the IGF 2021 possible: the Secretariat, the Multistakeholder Advisory Group (MAG), the MAG chair, the government of Poland, providers of financial support to the IGF, and all those who contributed to intersessional work, national and regional IGF initiatives (NRIs), and the annual global event.

The 2021 edition was the first one held in a hybrid format in the history of the IGF and offered the opportunity to identify high-level and practical challenges related to inclusion and participation, particularly of stakeholders from the global South.

What worked well?

Preparatory process

The various efforts made to expand and strengthen the preparatory and engagement phase contributed substantially to improve the levels of familiarity with the overall theme and the issue areas as well as to produce high-quality analytical views of the topics. The possibility to keep making progress towards a more outcome-oriented IGF was enriched with the variety of activities, spaces to engage with and discussions which were part of the 2021 preparatory process. It also contributed to diversifying the views and perspectives by offering multiple opportunities for input into the process both at the content and procedural levels.

The creation of the Policy Networks contributed to building greater awareness and understanding of the issues and approaches to key topics, but also represented a step forward in the crystallisation of the multistakeholder model. By focusing on the policy-related challenges, the Policy Networks offered valuable perspectives on responses and action steps needed at the global level by the different stakeholders in their respective roles, from an internet governance and internet policies point of view.

What worked not so well?

Overall programme

Despite the efforts to reduce the number of sessions, there was significant overlapping of sessions within the same track. A more concise and focused agenda would have contributed to avoiding overlaps and facilitated an effective follow-up of the treatment of issues within the various tracks. Overall, the reduction of the number of sessions should be aimed at fostering a more focused and easy-to-follow agenda.

In relation to sessions, there was an evident gap in voices and experiences of communities on the ground. As for the participation of big tech corporations, it is important to analyse whether their representation is spread across the different themes or concentrated in specific ones. It is also important for the IGF to analyse the implications of this in terms of the relevance for the IGF and the evolution of multistakeholder conversations and dynamics in order to avoid an echo chamber effect.

Hybrid format

Several challenges were experienced with the hybrid format. Greater consideration of the need to ensure that people in “marginal” time zones were able to participate remotely would have been useful not only to enrich the conversations but to ensure diversity of participation.

Logistics

Preparation for on-site participation (including preparation for sessions, coordination of side and parallel meetings, among other activities) was difficult particularly because of the lack of information about who was going to be in Poland. It would have been important to find ways to balance the security concerns in relation to disclosing information of confirmed on-site participants and the need to have timely information to facilitate planning aspects of on-site participation. This negatively impacted on taking advantage of the networking potential of the IGF and introduced uncertainty as a factor during the process. There were sessions that had all organisers and speakers participating through the online modality and, in those cases, there was a real disconnect with people in the room in Poland.

Hybrid events require that session organisers have mechanisms to coordinate with staff on the ground, to welcome participants to the sessions and establish the link with those attending remotely, to ensure effective interaction between the virtual and on-site dynamics. Participants facing technical difficulties on-site (including basic demands such as needing power to charge batteries of devices and other difficulties) did not have timely or any technical support.

The fact that the Poland time zone was used as the default time zone in the agenda of the IGF created confusion for attendance. Attendance was also impacted by the complexities of the registration mechanism adopted and the impossibility to share links to access the sessions. Having the IGF main website down for certain periods, particularly during the first day of the event, also resulted in further complications for participation and influenced the level of participation.

The processes for online registration and access to the sessions were demanding and involved too many steps, causing confusion among some participants and – given the various technical problems with the website during the first days of the convening – rendering participants unable to join sessions because they could not complete the final step that provided access to sessions Zoom links.

Inclusion, diversity and safety

While we acknowledge all the efforts made by the MAG, particularly the MAG working group created to discuss and prepare the hybrid agenda, the adoption of a hybrid model for the event showed how persistent the inequalities in access to and participation in policy processes are. There were concrete cases of arbitrary denials of visas to participants, including APC staff. The treatment reported by many in their dealings with consulate personnel in various countries was not in line with the commitments assumed publicly in this regard by the Polish authorities.

The pandemic developments triggered by the appearance of the Omicron COVID-19 variant a few days before the start of the IGF in Poland and the subsequent restrictions to mobility of participants coming from certain countries resulted in last-minute cancellation of on-site participation, including participation of APC staff. In conjunction, these factors obviously had an impact on the meaningful engagement of stakeholders from the global South.

Suggestions for the IGF 2022

Preparatory processes and the hybrid model

Because of the proven value of the expanded preparatory process adopted in 2021, it would be important to maintain it in 2022. We recommend that the preparatory process start earlier this year to allow more time between the various activities and avoid concentrating them in the weeks prior to the annual event. Greater attention to the diverse possible connections with NRIs and with the intersessional processes would be welcome.

The design of the hybrid agenda and event should also start as early as possible in 2022, addressing the challenges experienced in 2021 and allocating time for a testing period aimed at finding the most suitable solutions for them.

APC considers that the IGF is a key platform for identifying viable ways to shape, sustain and strengthen global digital cooperation, not only for universalising digital inclusion, but to mobilise collective intelligence and the potential of multistakeholder collaboration and action to respond to the persistent and emerging challenges in the digital age, including the environmental crisis. In that sense, the IGF continues to be the only multistakeholder process that can establish more accountable, inclusive, participatory and effective global digital cooperation among all stakeholders, building on its historical strengths and achievements, such as gender balance, multistakeholderism and decentralised structure, with the organisation of national/regional IGFs (NRIs). The hybrid model should be designed and implemented in a way that contributes to strengthening the IGF as a process and strengthens inclusiveness and balanced participation, particularly of stakeholders from the global South.

In that sense, we strongly recommend that in 2022, the virtual modality component of the hybrid model should be adopted as the primary parameter for the design of the IGF and in that way to increase possibilities to capture and build on last year’s experience. The IGF organisers should privilege the remote modality until the pandemic is under control in all parts of the world. The MAG should also keep open the mechanisms for working in collaboration with civil society organisations who have been systematising approaches, experiences and guidelines for designing and planning online and hybrid events, aimed at ensuring successful, inclusive and balanced meetings.

We also recommend that measures be taken to effectively tackle the issue of time zones and connectivity costs. Adopting the host country time as the single standard will again significantly limit participation of those based in incompatible time zones. We recommend that measures also be adopted to ensure access to a data support scheme, in addition to the usual travel support offered, to ensure participation is affordable to all, especially people from countries where broadband connectivity is not the default and data packages are expensive.

APC remains fully committed to participating in the discussion and implementation of ideas, structures, methodologies and technologies to ensure a meaningful hybrid event and contribute to reinforcing participation during all phases of the IGF process in 2022 towards making it a more open, inclusive and globally relevant process.

Despite the challenges, it was crucial to have the MAG working group on hybrid event thinking ahead of the annual meeting. We suggest that it continue to convene and to build on lessons learned from the 2021 edition, and to work towards inserting an improved hybrid component into the future edition of the IGF in a more consistent way.

We urge the MAG to consider proposing a vision of a hybrid model for global policy processes and events – designed intentionally in this new context – working with the experience and learning from the 2021 edition, in collaboration with stakeholders in the IGF community with relevant experience, expertise and resources to contribute to that end. The IGF could make a much needed contribution to the policy process ecosystem by offering a resource of that type.

Overall programme

Limiting the number of sessions/workshops accepted to be part of the agenda of the annual event should be accompanied by actions aimed at improving the flow of the sessions within thematic tracks. Having a daily broad issue guiding the conversations and connecting the discussions would be an option to consider.

The selection process and curation of workshop proposals and the process of organising sessions should take into account the imperative need to listen more to communities that are affected by the issues. The IGF should use as many opportunities as possible to bring voices from the ground and find alternative ways to use translation to ensure that the lack of it does not become a factor of exclusion.

Inclusion, diversity and safety

Some sessions confronted difficult situations provoked by Zoom “bombings”. The IGF could consider producing a security guide for IGF sessions. It could also consider improving communications and ways to offer information about how to optimise the use of other mechanisms to follow and participate in the sessions, including YouTube and other platforms.

We also felt there was a lack of adequate communication with organisers of sessions. While technical support worked well during the sessions, there was no information provided to organisers that would help them in prior planning for their sessions. We would recommend considering how to more effectively engage organisers in order to make the hybrid model work better.

Meanwhile, due to the unpredictable developments of the pandemic, there is a real possibility that visa and mobility restrictions will be even more rampant in 2022. All the necessary consideration should be given to people from the global South to facilitate their meaningful participation and engagement with the face-to-face component of the IGF. The host country should be chosen carefully assuming that they will provide the necessary assistance in a timely and transparent manner to all participants. The IGF Secretariat should start sending out names of participants who need visas to relevant diplomatic representations as early as possible, and better and more effective support for visa applications should be provided, ensuring the fewest possible administrative hurdles to justify the need for travel.

Strengthening of the IGF

It is expected that 2022 will be a critical year to set the tone for the development of both digital cooperation and internet governance for the next decade. The IGF should be strengthened as a platform conducive to improving coordination and cooperation in global internet governance and global digital cooperation, building on its achievements. We expect that the new Leadership Panel of the 2022 and 2023 IGF cycles will contribute to consolidating the IGF as a platform for identifying viable ways to shape, sustain and strengthen global digital cooperation by reinforcing and raising the profile of the IGF within the UN system, working hand in hand with the MAG, to complement its efforts. The IGF Leadership Panel should build on the lessons learned from years of MAG operations.

OFCOM Switzerland thanks for the opportunity to take part in this stocktaking exercise and would like to share the following inputs:

1. General comments and suggestions for IGF 2022 preparations

Please allow us to share some general suggestions for IGF 2022, in the spirit of an “IGF+” as proposed by the UNSG’s Roadmap on Digital Cooperation, particularly the ideas outlined in Paragraph 93.

In this line, in January 2021 the MAG Working Group on IGF Strengthening and Strategy (WG- strategy) developed concrete recommendations on strategic improvements to the IGF and operational measures in 2021. In our opinion, these recommendations are still very valuable and should be followed and implemented. Also, the WG-Strategy’s Response to the paper on “Options for the Future of Digital Cooperation” from September 2020 should be taken into account.

More specifically, we would like to share the following suggestions:

• We look forward to the appointment of a Tech Envoy by the UNSG, as outlined in Paragraph 74 of the UNSG’s Roadmap. A good collaboration between this position and the IGF community should energize the implementation of many recommendations from the UNSG Roadmap, while helping to raising the profile of the IGF. The Tech Envoy should closely liaise with the IGF, particularly the MAG and the IGF Secretariat.
• The personal participation of the UNSG (as in 2018 and 2019 – and virtually in 2017, 2020 and 2021) as well as the personal participation of the Host Country President of Head of Government should be further enshrined as a permanent good practice, as it strengthens the profile and visibility of the IGF and its outcomes.
• The IGF 2022, both as an event as well as its intersessional and preparatory process, should strive to serve as a key platform in the consultations to be held in relation with the “Global Digital Compact” envisaged in the UN-Secretary General’s “Our Common Agenda”. In addition, stronger synergies should be sought between the IGF activities and the implementation actions under the Roadmap for Digital Cooperation. In this sense, we fully endorse the MAG Chair letter sent in November 2021 to the UNSG, available under https://www.intgovforum.org/en/filedepot_download/213/20526
• The program should be more “issue-based” than ever, with maximum three or four focus topics - all culminating in a maximum of four high-level main sessions
• In addition, it should be more integrated than ever: NRI, DC, BPF, PNE should be integral part of the high-level main sessions, providing for integration of the respective intersessional groups into the corresponding four preparatory issue-groups
• There should be a build-up during the year, with focused preparatory discussions leading to

„draft messages“ to be put out for public comment and to be discussed in the high-level sessions

• The “messages” should be short, concise and to the point and be timely and widely distributed
• The IGF 2022 should be fully hybrid
• The high level (ministerial) track should be as well be an integral part of the program: two of the hl-main sessions could be explicitly targeted for ministers and parliamentarians
• There could be a small separate ministerial track: breakfast and dinner, while the rest of their program would be integral part of the IGF, in order to benefit from their participation in other sessions
• The MAG would be leading on all the program aspects, with the (still to be created) IGF- Leadership Panel providing strategic input on main focus topics, suggesting speakers, commenting on „draft messages“, and contributing to bringing final messages to other high- level fora
• The information sources at the disposal of the participants during the IGF (such as digital policy summaries, instant “session reporting”, “daily reports”, etc.) should be further developed, in particular through partnerships with, inter alia, the Geneva Internet Platform, GIPO, IG Schools, etc.
• The inclusiveness of the IGF can be further improved by including the voices and views of ordinary citizens – particularly from the global South – through citizens’ dialogues
• Strengthening the links and synergies between the IGF and existing observatories and helpdesks active in offering quality information and capacity building in the field of digital governance, such as the Geneva Internet Platform, GIPO, and the various schools for Internet Governance. As discussed in the MAG WG-Strategy, the IGF Secretariat could maintain a dedicated website linking to partners that provide such observatory and helpdesk functions.

2. Specific comments to the questionnaire
3. 1. Taking Stock of the IGF 2021: What worked well? What worked not so well?
4. 1. 1. IGF 2021 Preparatory process (timeline, call for issues and session proposals, session selection, MAG meetings, preparatory and engagement phase, capacity development etc.)

• At times, the preparatory process might have been difficult to understand for IGF “outsiders” or newcomers. Overall, meetings were well organized, but not all of them focused on specific issues as conversations often went into many different directions.
• The preparatory meetings for the hybrid sessions were not entirely as helpful as expected as a Q&A format was used. It would have been easier to follow if it was a presentation (which would make it easier to take notes) followed by a Q&A.

1. 1. 2. IGF 2021 Overall programme: thematic focus, structure, and flow

• The discussions proved to be politically relevant and in line with many of the world’s most pressing challenges when it comes to digitalization, such as digital inclusion, tech regulation, sustainability, digital rights, cybersecurity, AI, and more.

• However, probably the program may still be further streamlined, limiting the number of sessions and focusing on three or four well-defined priority areas, which would culminate in a maximum of e.g. four main high-level sessions.

1. 1. 3. IGF 2021 Hybrid format design and experience

• For the most part, the hybrid format design was a success, as it made the event more inclusive by letting people choose whether they wanted to participate physically or online.
• However, it was difficult to find and access the “3D venue” on the website, which was supposed to be a digital equivalent of the onsite venue, mainly because of the website, which did not work, or load properly in the first few days of the event. It was easier to access the sessions simply by having the Zoom link in advance.

1. 1. 4. IGF 2021 Logistics (website, mobile app, schedule, registration, access, use of online platform, bilateral meeting system, security)

• During the first two days of the IGF, accessing the website was rather difficult. Most pages did not load, including the schedule page, which prevented some online participants from accessing Zoom links. Thankfully, most sessions could be streamed live on the IGF’s YouTube channel, but the correct links were still rather hard to find, and watching events on YouTube prevented participation and interaction with the audience like on Zoom.
• However, once the Zoom links were available, the sessions were rather smooth, and there were little connectivity problems. Booking the physical bilateral meetings rooms at the IGF was an easy task, but getting approval for the bookings took a while.

1. 2. Intersessional activities and NRIs at IGF 2021
2. 1. 1. Best Practice Forums and Policy Networks at IGF 2021: please comment on process, content, and in particular on how these intersessional activities were included in the IGF 2021 programme

-     We would like to welcome the work of the newly established PNEs, especially the efforts undertaken by the “pilot policy network on environment and digitalisation”, which presented its draft report at the IGF 2021.

1. 3. IGF 2021 programme: please comment on the content, speakers and quality of discussions
2. 1. 1. IGF 2021 Sessions

• The IGF 2021 had many different types of sessions, which were all suited for different purposes, such as open forums, town halls, lightning talks, and networking sessions. Most of them functioned well in a hybrid format, except for networking sessions, which are difficult to conduct online or in a hybrid format.

1. 1. 2. IGF 2021 High-level leaders track

• There was limited high-level political presence compared to previous editions, perhaps due to the hybrid format and the concern about the Omicron variant, which may have led many to cancel their in-person presence.

Rome, 20 January 2022

II would like to thank the IGF for the opportunity to take part in the IGF 2021 taking stock. I share few considerations in my personal capacity.

The IGF 2021 Preparatory process worked well. However, I think some improvements could be introduced by reducing the number of sessions included in the programme and merging the sessions dealing with the same issues. The sessions debate should be more focused on specific issues and interlinked with results, projects, best practices implemented by the stakeholders worldwide.

It is also important to increase engagement of the “Non Attending” stakeholders reflecting why they did not participate and what are the elements that could increase their participation.

The IGF programme should guarantee more continuity between an IGF cycle and the next one in terms of tangible outputs, results and best practices. On this aspect It could be useful to adopt a multi-year plan identifying the IGF main priorities on a yearly basis and comparing them with those coming from NRIs and the other intersessional activities (DCs, BPFs, PNEs, etc.).

Based on the multiyear plan the IGF MAG could organize some events during the year in addition to the annual event.

The hybrid format was a successful experience that increased participation and it should be kept. However sometimes the zoom links did not work well and this aspect should be improved.

About the IGF 2021 High-level leaders track and Parliamentarian tracks, I think more participation should be promoted also with reference to the best practices and the possibility to implement common projects among the UN countries.

The NRIS sessions were well organized and debated however the IGF program should give more space to the NRIS. NRIs could organize some sessions focused on creating practical, feasible projects that bring solutions to an identified common issue (for example, courses for digital literacy done in a cooperative way among interested NRIs). It’s also important for the NRIs to define a common multi- year plan to support achieving goals long term that could bring sustainability.

Youth participation in 2021 was successful but it could be improved promoting youth participation in the different IGF WGs, to the intersessional activities and to the MAG.

Based on the results coming from the annual event, I suggest the IGF should promote the implementation of concrete projects.

A global IG Observatory supporting IGF work could be very useful. The Observatory should not limiting itself to the sharing of the results of the debate of the annual IGF event and of the previous editions but it should collect share and link information to the initiatives underway by other international entities that operate in various capacities in the Internet Governance constellation (ICANN, ITU, OECD, UNESCO, IEEE, CSTD, Council of Europe, etc.).

I welcome the new LP and I think it would facilitate sharing of the IGF results in the agendas of the international organizations dealing with Internet Governance issues (eg. OECD, ITU, European Commission, etc).

Section 1

What are the remaining challenges of including young people in the IGF process?

One of the main problems that we have today to include youth is to reach more audiences. Including people that are already part of some organizations, for example in Brazil, there are people in different countries concentrated in the same spots so everyone knows anyone, people are excluded, sometimes it is hard to include people that are not at these processes is difficult is something important to make diversified not just regionally. There are some other challenges worth mentioning, like:

Section 2

What roles should young people have in the development of the MHLB initiative?

Some thoughts attached. I enjoyed the sessions of the UN Information Governance forum that I could attend. https://intgovforum.org/en/dashboard/igf-2021

The United Nations convention on the Rights of Persons with disabilities, the European Union general Data Protection and coding”

Richard Fitton¹, Syed Ghulam Sarwar Shah 2 Amir Hannan 3

¹The Old Vicarage, Crowden, Glossop, Derbyshire SK13 1HZ UK

²Multidisciplinary Assessment of Technology Centre for Healthcare, Department of Information Systems and Computing, Brunel University London, Uxbridge, UB8 3PH, UK

³Thornley House Surgery, Thornley Street, Hyde, SK14 1JY, UK

E-mail: [email protected] [email protected] [email protected]

Abstract.

This paper presents the case for a global patient centred ethical governance of health data processing and suggests standards of data processing that a United Nation body might in the future have some responsibility for overseeing, balancing the roles of industry, the State and the individual in the processing of personal health data. I hope to attract UN interest in personal health data governance lest we develop a global system of inequality of access to health data as has happened over millennia with petrol, gold, coal, pottery, bronze, iron, coffee, tea, weapons, drugs , spices, etc.

1. KEYWORDS

Electronic health records, patient, access, EU Legislation, Data protection, United Nations conventions on the Rights of Persons with Disabilities. 

                                                     II. MAIN TEXT

The current law covering data processing in Europe is the European Data Protection Directive 95/46/EC.¹ The European Commission at Brussels COM(2012) 11/4 has accepted a proposal for a regulation of the European parliament and of the Council on the protection of individuals with regard to the processing of personal data and on the free movement of such data (General Data Protection Regulation [SEC(2012) 72] and [SEC(2012) 73] which comes into force in May 2018.

The United Nations Convention on the Rights of Persons with Disabilities declares:

“Recognizing the importance for persons with disabilities of their individual

autonomy and independence, including the freedom to make their own choices,

“Considering that persons with disabilities should have the opportunity to be actively involved in decision-making processes about policies and programs, including those directly concerning them,

“Recognizing the importance of accessibility to the physical, social, economic and cultural environment, to health and education and to information and communication, in enabling persons with disabilities to fully enjoy all human rights and fundamental freedoms,

“To undertake or promote research and development of, and to promote the availability and use of new technologies, including information and communications technologies, mobility aids, devices and assistive technologies, suitable for persons with disabilities, giving priority to technologies at an affordable cost;

“To promote access for persons with disabilities to new information and communications technologies and systems, including the Internet;

“To promote the design, development, production and distribution of accessible information and communications technologies and systems at an early stage, so that these technologies and systems become accessible at minimum cost.

3. OUR WORK ON CONSENT, PATIENT ACCESS, ALGORITHMS, CODING AND HEALTH DATA IN ENGLAND

“The Hadfield Medical Centre (HMC)¹ is recognised as an example of ‘good practice’ by the Department of Health (DoH) ² as it is committed to enabling patient participation, by creating opportunities where patients may participate in issues related to and affecting their healthcare. Dr Richard Fitton, staff and patient volunteers at the HMC have worked hard to promote and to maintain the momentum of patient participation for over seven years.

1  For more details please see www.nhsia.nhs.uk/erdip/pages/news_items/demo_141100.asp

2  www.doh.gov.uk/pcharter/phctip3.htm or Department of Health (1997), ‘Involving Patients – Examples of good practice, Crown copyright.

“The notion of patient participation was first recognised by the GP in 1993, at the time that he started working at the Hadfield practice. Time and experience led the GP to feel that there were large gaps in patients’ knowledge regarding their healthcare and the activities of the National Health Service (NHS). The GP thought that patients were ill informed about their health and their rights and responsibilities as patients.

The NHS Plan (2000)³ stated that the NHS is a 1940s system of care that is in great need of modernisation. The plan devotes an entire chapter (chapter 10) to patients, and acknowledges that patients have a right to be better informed and have more choice regarding their healthcare. It suggests that patients need to be empowered, and planned to give all patients access to their health records electronically by 2004. “

The importance of the relationship between patient and clinician. (Ref Hannan and Webber Medical and Care Compunetics 4 L. Bos and B. Blobel (Eds.) IOS Press, 2007 pp. 108-116)

Dr Hannan and Fred Webber PhD““Shared decision making” may be regarded as an aspect of “patient centeredness” and can enhance patient autonomy as well as being associated with more positive consultations without increased anxiety [33].

“The clinician can bring to the consultation his or her experience and knowledge of the medical world whilst the patients can bring their experience of

the symptoms of the disease and how it is affecting them. Together they can build a “partnership”. But for this partnership to be beneficial, it needs to provide something for each party. Trust is that basic commodity. The clinician needs to trust the patient who is telling them all they can about their illness whilst recognising that patients have their own agendas and may only tell them what they feel comfortable with.

“Similarly the patient needs to trust the clinician hoping that they will be given all the relevant information about their illness in a form they can understand. By accessing the medical records, the clinician is in effect telling the patient what their understanding of their illness is and what the plan of action may be. The patient is able to access this information, agree with it or refute it or identify any mistakes that may co-exist and then respond by determining what course of action to take.

“The more information there is, the greater the trust this breeds between the two parties. Trust can be broken and partnerships can split but when a Partnership of Trust is formed, it can create a synergy that enables the clinician and the patient to feel more in control and more at ease with their disease and enables patients to feel less ill.

Record access in England We contend that our work on record access has the potential to lead the way to a safer and more efficient system of health care that could be utilized globally but would require global governance that the United Nations might help to oversee to allow an equitable distribution of e-health care.

Patient Online ( https://www.england.nhs.uk/ourwork/pe/patient-online/) is an NHS England program designed to support GP** practices to offer and provide online services to patients, including access to coded information in records, appointment booking and ordering of repeat prescriptions. The service is at an early stage of adoption and is available to 50 million patients in England. Patients may share their health data in this way with whoever they wish.

**(Wikipedia – “In the medical profession, a general practitioner (GP) is a medical doctor who treats acute and chronic illnesses and provides preventive care and health education to patients”)

What algorithms and heurisms arose that involved coding?

Medical records contain many data and there are logistical issues around how patients can select and mark which items they do not wish to share. We considered two strategies for patients to mark sensitive data that they wanted to be asked about before sharing. The first was a heuristic system in which the patients checked through every entry in their notes and mark the data that they do not want to share. The second was an algorithmic system that utilizes the intelligence of data that has already been collected, coded and sorted into its root classification to simplify the process for the patient.

A group of patients in an English General Practice were asked to examine their own complete medical record and to mark those parts of the record that they would not want to share with a national care record. As expected the patients chose parts of their records that had a social context as well as a health service context. These parts of the record were data about infectious diseases, drug and alcohol problems, mental and social health issues, sexuality – including pregnancy and contraception and genetics.

To facilitate automatic separation of these sets of sensitive coded data we used the following common coded ICD10 (International Classification of Diseases) roots from the GP record and produced a data engine that put them into unique folders. In the system data engines created specific views of the patients’ data customized for each type of access. One engine displayed the codes to mirror the structure of the Read

coding hierarchy. One engine created “folder” or chapter views of the patient Read codes and text. Each “folder” was populated by codes from its own Read code chapter. Folders were designed to manage lifelong records and to aid sealed envelope use for purposes of confidentiality. The patient then marked the folders that they did not want to share without consent at each attendance or health data interaction and those that they would share within a regulated health service environment.

Disease categories

Infectious/parasitic diseases, Neoplasm, Endocrine/metabolic, Blood diseases, Mental disorders, Nervous systems/senses, Circulatory system, Respiratory system, Digestive system, Genitourinary system, pregnancy/childbirth/puerperium, Skin/subcutaneous tissue, Musculoskeletal, Congenital abnormalities, Peri-natal conditions, Symptoms, signs and ill defined conditions/working diagnoses, Injury/poisoning, causes of injury/poisoning

What are our suggested global standards for the processing of sensitive personal health data?

In our patients’ opinions at Hadfield Medical Centre in 2004:

• Data controllers (GPs in our particular case) should no longer be able to refuse online access to data subjects to all of their real time digital data if the technology can allow this access. (There is no section in the English current DPA that deals with immediate access to digital data)
• Data subjects should have the option of being part of a dynamic and ongoing process of deciding which parts of their data are sensitive and not to be shared without consent.
• Patient sensitive data (as defined by the patients as they view their data as it is being created with real time access to data that current technology allows– or later as they view it through their access rights) should be digitally coded and recorded at source as processing takes place.
• Data subjects should have an opportunity to be involved in the decisions that are made about the retention and destruction of their data. We believe that one option would be a statutory requirement for data controllers to approach data subjects say 6 months before they destroy the data to see if the data subjects would like to have the data retained or to have it processed at their own expense elsewhere. (Some patients wish their medical records to be detained for their families after their death. They already pass on their records to family members when they have been given them in a hard or digital format.) 
• Digital audit trails of access to personal data by third parties and professionals should be made available to the data subjects.
• Commercial and State data controllers should be under statutory obligation to publish on their public facing websites the information sharing contracts that they have made with other data controllers.
• Commercial and State data controllers should be obliged to publish the details of bulk transfers of personal data that they make from one data controller to another.

Discussion

The State can legislate for professional ethical, clinical, technological, security, administrative, legal and information governance standards for data processing but it cannot legislate for each individual’s moral choice of sensitive data.

Conclusions

Twenty seven European countries are about to utilise laws that will support a better ethical and moral sharing of data for health care purposes. In the past professionally produced and stored data has been stored in paper or enclosed electronic silos. The introduction of technology security, information, clinical, moral, organisational and legal standards is presenting an opportunity for the re-cycling and sharing of personal health data with consent amongst professionals, researchers and patients.

Well established and developing coding and classification systems allied to patients’ social definition of data may provide a way of adding a personal moral filter for each citizen to apply to his health data as his life and circumstances develop whatever the State or commercial organisation’s default on sharing.

Electronic health record architecture will need to support and instantiate national and international legislation, human rights and the technological interface that allows patients and citizens to exercise their moral choices about who can see their data.

We would suggest that the United Nations be asked to consider supervising standards to support citizens’ rights and responsibilities within the processing of their own health data.

PART I: Taking stock of IGF 2021

This section invites feedback on the programming, outputs, preparatory process, community intersessional activities and the event itself: What worked well? What worked not so well?

IGF 2021 Preparatory process

Timeline, call for issues and session proposals, session selection, MAG meetings, preparatory and engagement phase, capacity development etc.)

• Thanks to a timely announcement of the host country and MAG composition, sufficient time was allocated to the preparatory process, which started in good time in early January. Unfortunately the global COVID-19 pandemic continued to present challenges in the way of the planning process. The significant turnover in the composition of the MAG also contributed to a slower than usual start of the planning process.
• These challenges were to a large extent surmounted by the hard work and dedication of the IGF Secretariat and consultants, the MAG and MAG Chair and supporters from the IGF community.
• The professionalism and support of the staff working at the IGF Secretariat was greatly appreciated both during as well as in the run-up to IGF 2021.
• However, taking and communicating decisions on the themes, event format, new session types and preparatory phase was slower than expected, significantly shortening the time for preparation of the event. Therefore, some crucial elements of the programme, especially some of those that required a more novel approach this year due to the hybrid format, were left to the last minute (e.g. preparatory sessions for the tracks, booth organization) which fuelled some uncertainty at times and diminished effectiveness. Communication and outreach efforts throughout the year and in the immediate lead-up to the event were also negatively impacted.
• Efforts should be made to communicate the planning process ahead of time with a clear timeline and guidelines so that prospective participants are aware of the topics, the planning process and engagement opportunities, and are well informed about the various opportunities to contribute. Decisions on the event and preparatory phase duration, structure and format should, ideally, be communicated ahead of workshop submission phase, so that stakeholders can plan and propose sessions accordingly.

IGF 2021 overall programme: thematic focus, structure and flow

• The overarching theme of IGF 2021 (Internet United), while pertinent for the current context and broad enough to include dialogue on major global Internet governance issues, was chosen with little community input and remained largely unused by the community.
• Going forward, the MAG’s process to define and select sub-themes / issue areas should be formalized and communicated in advance, so that the community can accurately be informed on process and be ensured the programme reflects their responses to the call for issues.
• Concentrating the IGF programme into a few concrete thematic tracks worked very well in 2019 and 2020. The same approach was retained in 2021, however the themes chosen were very broad and sometimes overlapping. The attempt to further focus the IGF’s programme by the separation of tracks into main focus areas and cross-cutting issues did not bring the desired effect and little to no distinction was observed during the annual meeting between these tracks.

• Attention must be paid to avoid adding further themes and topics to the annual IGF in order not to overcrowd the programme and maintain a lean and manageable agenda. For the future, we recommend no more than four tracks with clear, concise and easily understandable themes.
• Aligning workshop proposals under the thematic tracks continues to work well and is helpful to the MAG in choosing workshops for the programme and defining sub- themes under each track. However, attention must be paid that the number and focus of sub-themes remain manageable. It would be a welcome addition if the programme schedule featured those sub-themes in tags.
• Efforts should be continued to align other sessions that are part of the official IGF programme (Open Forums, DCs, BPFs, NRI collaborative sessions, etc.) under the thematic tracks, from the start of the submission and evaluation process.
• The IGF 2021 Guide to Issues and Policy Questions, as well as the Issue Area Wikis were very welcome and useful for participants, especially newcomers, to gather all necessary information in one place and prepare for the discussions. This practice should be retained in 2022, while paying attention for the documents to be produced well ahead of the annual event, and constantly updated along the MAG’s planning progress to allow for community input and enough time for dissemination.

IGF 2021 Hybrid format design and experience

• We commend the work of the MAG working group on the hybrid format, who devoted a lot of time and effort to overcome the challenges posed by the ongoing pandemic to the organization of large-scale international events. The host country’s efforts and investment in providing technical equipment and staff to support the engagement of both onsite and online participants were also greatly appreciated.
• We regret, nonetheless, that despite these considerable efforts, there was significant confusion around the hybrid format, with session organizers unsure of their role and responsibilities (especially when organizing sessions remotely or with all-remote speakers), onsite participants unaware that they were also required to connect to the online rooms and therefore feeling left out or technical difficulties in accessing the event website and dial-in links.
• Furthermore, a number of sessions at the event were interrupted by “zoom-bombing”, causing a negative and disturbing experience for organizers, speakers and participants alike. While this is indeed a known risk of large-scale online events, such incidents might be avoided with some simple security settings and steps (such as not communicating session links publicly, controlling participant audio/video by the host, limiting screen sharing, setting meeting password, etc.), or at least promptly mitigated with specific training provided to the technical staff.
• The 3D venue was a very much appreciated idea, however, many participants were not aware of it, or had difficulty finding the link on the IGF website. Booth organizers had very little information on what was expected of them for the virtual booth, and how their booth would look like.

IGF 2021 logistics

Website, mobile app, schedule, registration, access and use of online platform, bilateral meeting system, security etc.

• While the IGF 2021 website contained comprehensive information on the event, finding the relevant information required some browsing.

• Registration to the individual sessions seemed laborious and confusing to many, at least in the initial stages of the event. Many did not realize that after registering to the overall event, individual registrations for individual sessions were also required by adding sessions to one’s personal schedule. It was also confusing to many how to find the participation link, once the session was added to a participant’s calendar. While it is very commendable that the highest level of precaution was taken to ensure only registered participants have access to the individual sessions, the process should be simplified and considered from a first-time participant’s perspective, especially as these measures were not successful in keeping unwanted visitors away from the sessions (see above).
• The website, unfortunately not for the first time, also experienced serious difficulties (especially in the first days of the event), possibly due to server overload, making it impossible for organizers, speakers and participants to find dial-in links to their sessions. This significantly limited real-time engagement with the audience and was the cause of frustration and negative feedback from speakers (especially those attending the IGF for the first time).
• The ability to follow sessions live-streamed on the IGF’s YouTube channel helped in increasing access and flexibility for participants to follow discussions.
• It was very welcome that recordings of individual sessions were made available immediately following the session. This practice should be maintained for upcoming IGFs as well, whether held in-person or remotely, but more attention should be paid to editing the recordings of sessions that experience inappropriate incidents such as “zoom-bombing”.
• Communication activities between the IGF Secretariat, past and future host countries and the UN DESA Secretariat require better coordination, especially on social media, so that individual efforts can be reinforced and a wider audience be reached.

Intersessional activities and NRIs at IGF 2021

Best Practice Forums and Policy Networks at IGF 2021

Please comment on process, content, and in particular on how these intersessional activities were included in the IGF 2021 programme.

• The intersessional work of the BPFs and Policy Networks are strong examples of how the IGF can gather, catalogue, and share valuable tangible outputs without being prescriptive.
• Efforts to archive the outputs of the intersessional work streams and BPF documents and publish them on the IGF website are appreciated. They should continue to be promoted in a manner that is accessible and searchable to the lay user who may not be familiar with the IGF and its structure (or indeed with the terminology of “BPFs” and “PNs”).
• Continued efforts should be made to better target communication and promotion efforts of these outputs.

Dynamic Coalitions at IGF 2021

• N/A

National, Regional and Youth IGFs at IGF 2021

• N/A

IGF 2021 programme

Please comment on the content, speakers and quality of discussions

IGF 2021 sessions

Workshops

• Once the IGF 2021 themes were established, the workshop proposal and selection process was well organized. However, workshop proponents seemed to have difficulty in understanding the difference between the focus areas and cross-cutting areas.
• Some session attendees noted they were unaware of the possibility of organizing workshops or the speaking opportunities this provides.
• The thematic approach helped to somewhat reduce the number of workshops on the same topics, albeit some overlap between workshops could still be observed, especially among themes that were very similar.
• Some sessions worked well because they combined people able to give global, policy perspectives with others able to share more operational perspectives as they are deployed on the ground.
• A number of workshops and other sessions were lacking in balance and diversity in terms of speakers, with one or more stakeholder groups not represented at all in the discussion.

Main sessions

• The Main Sessions play a useful role in the programme of providing a space for a potentially different and broader level of discussion and bringing in more high-level speakers. In this way, they help extend appeal beyond participants who regularly attend IGF meetings, and in particular among government and business constituencies who have historically had lower attendance levels. For this reason, it is imperative that enough time and careful attention is devoted to their planning.
• It worked well that Main Sessions were coupled with the IGF 2021 themes, but due to the large number of themes it was difficult to accommodate all main sessions in the program and certain days of the event were a little main session heavy.
• In some cases it was difficult to find synergies between the preparatory sessions and the main sessions.
• Main sessions were oriented to meaningful exchanges on topics of broad interest, especially those that focused on practical examples of applying policy or practices to address challenges and allow for capacity building across the range of discussants and participants, thereby reinforcing the commitment to the multistakeholder approach.
• Two hours / session seemed to be the right amount of time to allow for a deeper dive into discussions and allow for audience input, while still maintaining the interest of participants throughout the session. In the past there were occasions where no other sessions were running in parallel with Main Sessions, thus allowing for wider participation as well as elevating the status of these sessions on the IGF program – this should be an example to follow going forward.
• Providing synergies between main sessions and the IGF intersessional work, as well as the wok of NRIs gives an extra opportunity to raise the visibility and impact of their work. This opportunity should be further explored in upcoming IGFs.

IGF 2021 High-level leaders track

• The efforts of the host country, the IGF Secretariat and UN DESA to attract government officials, legislators and business participants, especially for the high- level sessions was well received by the community. It was unfortunate that many high-level participants did not attend the IGF in person, due to the outbreak of the Omicron variant, this significantly limited their interaction with other parts of the IGF programme. In the future further efforts should be made to encourage high-level participants to engage with other the IGF sessions and events aside from the panel they speak on.
• Efforts could be made to communicate the participation of HL attendees ahead of time to drive the interest and participation of both IGF attendees and the media.

IGF 2021 Parliamentary track

• Continuing the tradition of the Parliamentary track started in Berlin was welcomed. Efforts should be made to better integrate this track with the other IGF activities and ensure the participation of parliamentarians in other IGF sessions and interaction with IGF participants from all stakeholder groups.

How do you see the IGF 2020 programme content from a gender perspective?

• Many sessions on the IGF programme have reported to have addressed gender issues as part of their discussion. Most, although unfortunately not all, session organizers have demonstrated efforts to strive for gender balance on their panels. Efforts must be sustained in this regard to ensure there are no sessions on the IGF agenda with a disproportionate underrepresentation of women.

IGF 2021 participants

• At over 10000 registered participants, the attendance of this year’s event reached a new record high, the hybrid format allowing for many who could not have attended an in-person event to follow IGF sessions.
• It would be interesting to know whether this increased level of registration also brought increased level of active participation from new groups of attendees. Therefore, further statistics would be useful to help analyse not only registrations, but the participation of connected attendees to individual sessions.
• While participation of government and business representatives has improved slightly, efforts need to continue to attract these stakeholders groups to future editions of the IGF.

IGF 2021 village

• The IGF village is an integral part of the in-person IGF experience, providing opportunities for networking, information sharing and discovery. The efforts of the host country team to accommodate requests, set up and service the village were very much appreciated.
• Unfortunately, while significant efforts were made to provide a virtual space for booth organizers to showcase their work, little was done to promote the virtual booths or enable them to add some networking or interactive activities to the agenda.
• Looking ahead to 2022, if another online or hybrid event is considered, the virtual IGF village must be adequately advertised to allow for meaningful and interactive participation of attendees.

IGF 2021 communications, outreach and outputs

Overview of the IGF 2021 Outputs is available at https://www.intgovforum.org/content/igf- 2021-outputs

• Showcasing the various IGF outputs promptly on the IGF website was very welcome and useful to demonstrate the value IGF discussions bring to the community. Capturing and promoting them successfully helps increase the reach of these conversations beyond the IGF session participants.
• Commendable efforts to attract journalists were made, especially on the side of the host country inviting national and local media. These efforts could be amplified through a systematic outreach and media strategy to identify relevant news outlets (especially on the international level) ahead of time and sharing information on topics expected to be covered at the IGF, as well as high-level participants in attendance.
• The IGF messages report has an important role in bridging consecutive IGF cycles and highlighting the various IGF outputs, and ensure consistency between them, therefore credibility of the IGF for the future. Efforts should be made to better inform participants on the process of drafting of the messages and how their session summaries contribute to the final IGF messages. Session participants should also be made aware of the possibility to comment on the draft messages. Sharing such information with session participants helps improve the balance in participation, which in turn increases the legitimacy of messages.

PART II: What are you suggestions for improvements for IGF 2022?

IGF 2022 preparatory process

Timeline, call for session proposals and session selection, MAG and Open Consultations meetings etc.

• Given the continued global health crisis and persisting domestic turbulence in the 2022 host country, we urge the IGF Secretariat and UN DESA to carefully consider the possibility to hosting IGF 2022 as planned and make a final decision on the location and dates of the annual event as soon as possible, but no later than six months ahead of the event.
• As the hybrid format has notable benefits for accessibility and participation, organizers should consider retaining (elements of) this format. Even once full in- person events return, session organisers should be encouraged to include remote participants where that helps provide a geographic or policy perspective not necessarily possible because some relevant experts do not have the time and / or money to travel to an overseas meeting. Before COVID-19, remote participants were largely secondary in practice, even if organisers were encouraged to make time and use tools to provide space for questions from remote participants, the 2021 IGF proved that it is possible to host successful sessions and fruitful discussions with many (or all) speakers spread across the globe. Benefitting from the experiences of the virtual IGF in 2020 and the hybrid IGF in 2021 we should increasingly think in terms of hybrid events that will allow for a broader range of people to participate.
• To support the profile of the IGF and to recognise the considerable investment by host countries, a high-level leaders’ event (or similar) should continue to be on the agenda.

Agenda

• A more focused set of topics and policy questions would be preferred to support a more streamlined agenda, with session formats that allow for greater participation from non-panel members. The IGF should not have more than four tracks with clear, concise and easily understandable themes that do not overlap.

Planning process:

• There is an increasing need for a clear and easily understandable process, through which the community can contribute to the IGF agenda in a bottom-up fashion. A calendar and a visual representation of the process, such as an updated version of the IGF Programme Framework should be made public to outline the planning cycle for the IGF in a simple, yet comprehensive format, to illustrate the agenda and programme-setting process and mark deadlines and engagement points for the community.
• Such a framework could also form the back-bone of a communication and outreach strategy, creating a year-long calendar for outreach messages and social media content where relevant updates can be shared on the preparatory process and track narratives and input from the community can be invited at each milestone.
• The IGF Programme framework, including improvements made in the past years, should be used as a base for the preparatory process in 2022 and should be further strengthened through clear measures of success, standards of work, and a critical number of people committed to lead/support the activity across all stakeholder groups. This would require an analysis of required resources and responsibilities, including of the Secretariat and any consultants, to ensure that any initiated work (traditionally part of the IGF or newly proposed) will be successful. There should also be clear mandates of authorization for each intersessional work stream.

Communication

• There is an ever increasing need to raise wider awareness of existing IGF outputs and support their better dissemination.
• Further discussion should be encouraged on what defines success for the IGF, what is meant by tangible outputs and what problem the outputs are intended to address. The IGF Secretariat should develop a work plan to identify, gather and better market existing outputs of the IGF. This would roughly follow the steps below:
  • Identify existing outputs and outcomes, both written products and success stories of collaboration / impact
  • Organize and cross-reference these by topic, and possibly with tags, so that these can be easily searched
  • Identify potential audiences
  • Targeted outreach and communication to better market the outputs
• This work plan should be supported by a timeline, an analysis of required resources and responsibilities, and indicators and measures of success. The Secretariat should be equipped with resources to be able to execute this plan.
• To improve the marketing of IGF outputs, the following should be considered:
  • Pare down intersessional work streams to allow for more concentrated effort and better support for selected work.
  • Task the IGF Secretariat (not a recurring MAG Working Group on Outreach and Communication) with outreach efforts and dissemination of existing outputs (policy material, reports, and case studies of successful cooperation/projects that rooted in IGF meetings and discussions). Guest blogs or interviews about IGF success stories.

• • Equip IGF participants with a communications / social media toolbox or guidance on how they can help disseminate messages. This would help increase outreach and enable participants to act as multipliers to official IGF communication.
  • Ensure close coordination on communication activities between the IGF Secretariat, the UN DESA communications team and the host country communications team to avoid duplication of efforts and mutually reinforce messages.
• The legitimacy, accountability and balance of IGF outputs must be held to the highest standards:
  • The balance of stakeholders needs to be maintained in every work stream of the IGF in order not to undermine their legitimacy, and to implement the multistakeholder approach which is intrinsic to the IGF
  • Outputs of any intersessional work must ensure accurate reflection of all opinions
  • The MAG should consider ways to raise profile of the IGF and strengthen the participation of underrepresented groups and regions and enhance the credibility of IGF work streams by addressing their balance and ensuring representation of regions and stakeholders. Capacity building programs aimed at underrepresented groups can help ensure meaningful participation.

IGF 2022 Overall programme structure and flow

• Concentrating the IGF programme into a handful thematic tracks in 2019 and 2020 was a very welcome idea and translated well into the final programme of the IGF. The 2021 edition seemed to move away from this precedent. The idea of three-four (but not more) thematic tracks should be maintained going forward to help streamline the agenda.
• It is important to continue the practice of consulting the broader IGF community on issues to be discussed at the IGF, that will inform the MAG’s decision on the topics for thematic tracks.
• Aligning workshop proposals under thematic tracks works well. Efforts should be continued to align other sessions that are part of the official IGF programme (Open Forums, DCs, BPFs, NRI collaborative sessions, etc.) under the thematic tracks, from the start of the submission and evaluation process.
• To ensure that the preparatory phase and Day 0 event as well as the high-level portion of the IGF programme continue to fulfil their potential going forward, efforts should be made that these also support the tracks and themes of the annual event.
• An exchange between past and future host countries and MAG members on potential improvements and ideas for preparatory, Day 0 and high-level events and the overall IGF programme would be welcome.

IGF 2022 Programme content