Mapping and Promoting Collaboration Between Patient Association Groups in Chile using Organizational Network Analysis

This is a guest blog post by Rubén Angel. Rubén is a Senior Associate Consultant at Humana Consulting Global where he works with a range of clients to help drive their transformation programs utilizing a broad toolset from Culture, Leadership and Network Science. Prior to Humana, Rubén held a number of senior HR positions in Latam for Roche and Empresas Polar in Venezuela.

Introduction and Background

A few months ago I was approached by someone that was familiar with some of the work that I had previously done using networks to map and understand complex relationships. The problem statement here was “How can we better understand and support the Patient Association Groups (PAGs) in the oncology space in Chile?”. By way of background, there are a number of such support groups that operate across Chile and many of them have either a specific geographic focus or focus on a particular type of cancer or both. There are existing connections between these groups but it’s a classic case of a complex set of relationships without a great deal of visibility into those relationships.

In scoping the project, it became clear that what would be most beneficial would be to map and understand:

1. The connectivity between these different Patient Association Groups
2. The relationships that existed between these Patient Association Groups and various public institutions
3. The relationships that existed between these Patient Association Groups and private institutions such as pharmaceutical companies

From my previous experience, I also understood that there were likely some unknown or under-recognized sources of support for the patients that we were focussed on. I was keen to understand what these sources of support were and how we could improve their effectiveness even further. So, in addition to collecting data on the above mentioned networks / relationships, I also decided to collect data on these non-traditional sources of support at the same time.    

Our Approach

The first step was to of course collect the data and we decided to run a relationship-based survey (i.e. an Active Organizational Network Analysis) for this purpose. This Organizational Network Analysis (ONA) was necessarily a bit different to the standard ONA that is run within a single organization - in that more common application of ONA we would have a bounded network (the employees in the organization or a subset of them) and we are generally easily able to obtain an HRIS demographic export that we can use to ask bounded relationship questions (like “Who do you go to for advice?”). Here though we needed to map an ecosystem rather than a network of relationships within a single organization. For this purpose we turned to Fundación Vi-Da, which is an overarching organization that works with many Patient Access Groups.  

Fundación Vi-Da reached out to the PAGs that they had existing relationships with and asked each one whether they would be prepared to participate in this project. We received positive responses from 25 PAGs with one individual representing each Patient Access Group. The next step was to create a relationship-based survey in Polinode. The respondent list for this survey was the 25 identified PAGs/individuals and we created an 11 question survey that was designed to collect data on: (a) the relationships that existed between the various PAGs; (b) the relationships that existed between the PAGs and public institutions and (c) the relationships that existed between the PAGs and private companies such as pharmaceutical companies. In creating this survey we used the Supplementary List functionality in Polinode so that we could ask relationship questions of a broader group than just the respondents (i.e. we were able to upload a list of private companies and public institutions to ask relationship questions of). We also used some of the advanced Polinode functionality that allows respondents to add items to the lists - this was important because we were mapping an unbounded network here. That is to say we had some idea of the public institutions and private companies that respondents might nominate but we wanted to make sure that they were not constrained and could add other organizations to the lists. It’s also worth highlighting that we collected not only the existence of relationships between these groups but also data on the type and quality of these relationships. For example, we measured whether a relationship was a high trust relationship or not and whether there was an element of teaching or knowledge transfer associated with a relationship.

Analysis and What Did We Learn?

The core analysis that we started with included identifying:

1. People who operate as technical experts and sources of information: people who are sought out for technical advice and knowledge-based on their experience
2. Energizers: people who motivate, inspire, and are a source of energy to keep going, especially during challenging times.

We also created a number of collaboration matrices to understand the degree of interaction among patient associations and other key connectors by sector. Additionally we look at the “value” that respondents were receiving from different types of support.

Technical advice and a critical source of information

One of the difficulties faced by many healthcare systems in Latin America is the challenge patients and their families encounter when navigating what amounts to quite a bureaucratic system. This is why PAGs are often such a critical resource, especially when dealing with complex diseases like cancer. Members of these organizations must have sources of information and technical knowledge of the system, particularly in complex cases that deviate from the norm.

Two individuals in particular - labeled here as A1 and A2 - were repeatedly identified as both key sources of information and technical support. This suggests a high concentration of knowledge in these two individuals but also the potential that they might be overburdened. There was a clear risk of overdependence here.      

Sources of energy

PAGs help support and manage the care of patients with highly complex diseases in what can sometimes be cumbersome health systems. This can mean that members of this type of organization can become emotionally drained and sometimes are at risk of burnout. Hence, energizing connections are of vital importance in this context. We once again found members A1 and A2 as the main energy source connectors, although in this case other members also appear. However, these people continue to be fundamental actors in this role.

Support from the public sector

In Chile, 80% of the population uses the public system to meet their health needs. Hence, connections in the public sector that facilitate the work of PAGs are key to expediting solutions, defining policies, allocating resources and resolving situations at both the macro and micro level. It was apparent from the network data that there was a strong degree of geographic grouping in terms of the relationships from the PAGs to the public sector institutions. It’s important to remember that Chile extends from north to south a total of 4,300 km in length, which represents an important organizational challenge, even more so if we take into account that the highest population density is located in the center of the country (Metropolitan Region and Central Government). Compare for example the connectivity around that central region and the more remote region of Magallanes. It is also very important to highlight the influence of a key individual in the public system, former senator Carolina Goic. She was surfaced as very central in our analysis and has been an important contributor to public policy in Chile, especially with regard to the design, discussion and approval of the National Cancer Law in Chile in August 2021. She appears as a highly central individual within the public sector network who connects with a great deal of influence and centrality to the entire network.

Support from the private sector

We also analyzed the private sector connections as a separate network in order to identify the most important private sector organizations in the context of providing support to PAGs. We found here that the most important relationships were with companies in the pharmaceutical sector. Three organizations in particular stand out - Pfizer, Novartis and AstraZeneca. It really struck us that smaller organizations or organizations from other sectors were hardly represented at all.

Unexpected sources of support

The last analysis that we performed was around unexpected sources of aid. The central idea is to identify unconventional aids that positively impact the work of PAGs in different regions of Chile. What really stood out for us here was the role of:

1. Beauty salons as a meeting point for cancer patients, who, amidst their treatment, want to look good and find in these places a space to talk about their experience, where they are listened to and receive emotional support.
2. Shipping Ports in Chile play an unexpected role. Many of the companies that run these ports have a high impact on their surrounding communities. Ports allocate resources to help patients in these communities and they have worked closely with PAGs in order to allocate and facilitate this support.
3. Fan clubs of local artists or members of fan clubs of international artists like Taylor Swift. These groups are able to disseminate information quickly and have the ability to respond very quickly to requests for help, especially for special or urgent cases.
4. Catalysts / Connectors such as donors and foundations beyond the healthcare system who are available to support PAGs in various ways.

Workshopping the Results

One of the most impactful aspects of this ONA was when we were able to get a large proportion of the participating PAGs physically in a room together in order to share the analysis and results with them. We began by providing a gentle introduction so network concepts and then shared a number of the insights and the core analysis with the group. This led to a number of fruitful discussions and itself helped forge a number of important connections across the groups.

Importantly the groups were able to share their experiences around connectivity with a view to building a degree of collective intelligence so that others could replicate what worked well and build on it.

There was a particularly important discussion around the unexpected sources of support. Some groups had not realized the role of beauty salons for example (or not yet tapped into it). There is a lot more that I feel can be done to both share and leverage these sources of unexpected support. For example, the meeting point represented by beauty salons opens up the possibility of providing training and support through these venues. This might include technical advice to the professionals that work there, for example to recognize skin lesions or risk factors for their clients or to simply be trained to provide additional support to patients. A whole world of possibilities became clear through this workshopped session thanks to the exchange of ideas and the discussion that went along with it.

A Summary of our Recommendations

Based on the main findings of the ONA, we made the following recommendations:

1. Expand technical training in various patient organizations and among key stakeholders to reduce potential collaborative overload on connectors A1 and A2, while also amplifying and distributing critical knowledge. Enable digital repositories of information and simulate consultation cases.
2. Promote a greater degree of connectivity and the exchange of ideas between the different Patient Association Groups to enhance collaboration and collective intelligence. This should include leveraging virtual collaborative tools, joint projects and a “marketplace” of needs and solutions.
3. Share concrete experiences of interaction with the public and private sectors through retrospective exercises that include lessons learned, possible collective action, and connections. Create deliberate and structured spaces for collaboration between PAGs and the public and private institutions.
4. Replicate experiences with sources of unexpected support to capture best practices that enhance outcomes for patients. This could start with specific cases discovered through the ONA such as Fan Clubs, Beauty Salons and Seaports but shouldn’t be limited to these examples. Leverage these existing channels, for example by tapping artists, beauty companies and logistics / transport companies.
5. Initiate a process of network mentoring to help share the load in the future and assist targeted individuals to acquire specific skills that amplify the impact of patient associations.
6. Keep the survey open to incorporate the opinions of other patient associations, and review the data and networks in six months time.

Next Steps

The outcomes and learnings from this project were significant and we intend to apply them in the future. We are particularly keen to expand the networks that we mapped - both within Chile and outside of Chile. We are already exploring collecting similar data in other Latam countries and we also have some ideas for improvements to the process. This includes mapping broader individual-to-individual networks in addition to the organization-to-organization networks that we focussed on in this project (where the PAG organizations were represented by one individual).

The project has been rewarding and energizing and we can see many extensions to it and are looking forward to collaborating with others in the space or with similar needs or objectives - please feel free to get in touch!

Acknowledgements and Thanks

I would like to thank all the members of the PAGs for participating in this research, the energy from Felipe Schiaffino at MonkeyLabs, Universidad del Desarrollo, the members of Fundación Vi-Da, and especially Jorge Fernández, Verónica del Villar, Advocacy Manager at AstraZeneca Chile. And finally, thanks to Chad Taberner and the rest of the Polinode team for the methodological support.