Solving Undiagnosed Diseases with De-Centrealised Knowledge Sharing

Solving the Unsolvable: How De-Centralized Knowledge Sharing Helps Diagnose Children With Rare Diseases

by Georgia Hay and Florian Klonek

Despite scholars and practitioners alike praising the positive outcomes of interdisciplinary collaboration, especially in complex professional work, work design in healthcare has often remained siloed, rendering interdisciplinary collaboration difficult.

But in a deliberate attempt to remove silos, Gareth from Genetics Services of Western Australia and the WA Department of Health Office of Population Health Genomics (OPHG), introduced the Undiagnosed Diseases Program in Western Australia (UDP-WA)[1]  to improve the diagnosis of rare diseases in children. UDP-WA has redesigned the work of clinicians, who now come together in a monthly meeting to creatively synthesize the patient information and brainstorm new (or previously abandoned) possible diagnoses and next-steps for the patient.

Two years into its implementation, the initiative has been very successful (the success rate of definitive diagnoses is 55 %).

So how does UDP-WA work? Or, in the words of one of the clinicians in the program, “Why is it that these children have seen so many other specialists, but only here do they receive a diagnosis?”. Key to the success of this work redesign has been the introduction of the “Expert Panel Meeting”. About once a month, specialists from a range of medical fields come together to address a specific case. Specialists include, for instance, clinicians from clinical genetics, neurology, imaging, endocrinology, gastroenterology, cardiology, haematology, ophthalmology, respiratory medicine, and metabolic medicine.

The panel reviews the existing medical history of the patient and makes recommendations for further clinical assessment. All panel members receive patient summaries and can comment on these. Irrespective of the clinical domains identified in each patient, the specialists are encouraged to put forward their own view. A diverse range of perspectives encourages broad and lateral thinking, and “ultimately fosters triangulation on diagnostic possibilities.” (p. 4)[2] 

From an academic perspective, the team design can be described as fostering the decentralization of knowledge. Before the implementation of the UDP, the work design of the clinicians that diagnosed patients with rare diseases was characterized by a centralized critical knowledge structure

Centralized knowledge structures tend to be associated with poorer team performance because the critical knowledge that will unlock the puzzle is only shared with a small number of people[3]. Unshared information that is key is not circulated sufficiently in the team of clinicians and therefore an optimal solution cannot be discovered. The same research shows that the effect of centralized knowledge structures on team performance is even worse when teams are diverse (i.e., members with different functional backgrounds) and when some team members contribute a high amount of exploratory knowledge. Both of these aspects apply when diagnosing rare diseases: many different specialties are involved (so the team is diverse) and diagnosis often involves knowing about new and unique technologies such as genome sequencing and facial analysis (so the knowledge is often exploratory).

But when the knowledge is decentralized (Team B in Figure 1), this means that clinicians have better means to work cooperatively and interdependently – they can access better unique (and unshared) patient-related information and perform better at their job. Gareth observes that “everything that breaks down those silos” is helping him to be most effective in his work. He can collect and harness different perspectives. Crucially, specialists in the expert panel meetings often discuss hunches or intuitions, which can spark solutions. As Gareth notes, “there are so many things that are not captured in notes”. When specialists come together face to face, they share this informal knowledge.

Exactly what goes on in a successful Expert Panel meeting, and what makes one meeting more effective than another, is currently unknown. We, at the Centre for Transformative Work Design, are engaging in a research project with Gareth and the OPHG to investigate in greater depth what processes and structures best facilitate knowledge sharing and the greatest number of “aha” moments. It is these moments that help clinicians, and health systems more broadly, provide care that is better tailored to patient need; in this case the need for a diagnosis.

We hope the outcomes of this research can be applied to other areas where interdisciplinary work is needed, in healthcare and beyond. Stay tuned for more findings!

References

[1] UDP-WA is part of the Undiagnosed Diseases Network International (UDNI). For more information, see Baynam, G., Broley, S., Bauskis, A., Pachter, N., McKenzie, F., Townshend, S., ... & Schofield, L. (2017). Initiating an undiagnosed diseases program in the Western Australian public health system. Orphanet Journal of Rare Diseases, 12(1), 83.

[2] Baynam, G., Broley, S., Bauskis, A., Pachter, N., McKenzie, F., Townshend, S., ... & Schofield, L. (2017). Initiating an undiagnosed diseases program in the Western Australian public health system. Orphanet journal of rare diseases, 12(1), 83. 

[3] Huang, S., & Cummings, J. N. (2011). When critical knowledge is most critical: Centralization in knowledge-intensive teams. Small Group Research, 42(6), 669-699.

Innovator / Entrepreneur

Inside CORE Innovation Hub: How a Focus on Problem Solving Creates Freedom and Meaning in Work

Tamryn scored her job 10/10 (ten being the most enjoyable job you can imagine).

by MK Ward

You would expect that everyone who works in mechanical engineering and the mining sector does tasks that involve machinery and tangible inputs and outputs. You would expect the work to be structured, precise, and measureable. Tamryn works in the industrial sector of mining and if you think her work is tangible with clear measures of inputs and outputs, you would be wrong. What does Tamryn do? The answer will take us around the world.

Tamryn Barker is the founder and CEO of CORE Innovation Hub. Tamryn’s journey to get to this point was full of bold moves, conversation, and passion for facilitating problem solving. What does that look like? The first step was failure.

Tamryn worked for a start up in the energy sector. Despite good quality products, the start-up failed, but provided some valuable lessons for Tamryn’s journey. First, speed to market is critical – you simply have to be fast enough to capitalize on the market opportunities. Second, Tamryn learned that it’s important to have “skin in the game”, to really have that buy in and be truly invested in the company. Subsequent jobs involved Tamryn scanning the world for interesting problems to solve, picking one where conditions and timing were right. And that’s why she moved to take jobs in London and China.

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Creating a problem-sharing environment

A $71 billion opportunity of the mining sector drew Tamryn back to Perth where she and the team at CORE are working to build innovation and collaboration in the energy sector. “Perth is the hotspot for skills in mining problems, not Silicon Valley.” In order to unleash the potential of those skills in Perth, the culture in the industry needs to change into a problem-sharing environment. The unique thing about Tamryn’s work is how difficult it is to point at, define, map, and measure. For part of her work and much of her career, she has liaised between industry and government to bring about change, often to change policy. How do you make collaboration tangible? How do you get feedback about your work?

“In some sense this isn’t the question, because collaboration is the process and it’s not really about how many phone calls or new numbers are exchanged or the number of meetings. Rather it’s more meaningful in my mind to see if the industry sector has grown.”

Demanding beginnings

To achieve this type of growth requires continuously shifting attention from projects to the vision of CORE. So what does a work day look like? In the beginning of CORE, Tamryn was heavily involved in daily operations. How do they develop membership packages? Are the toilets clean? What does a maker-space look like? There were lots of meetings, emails, short and focused reporting with the goal of sharing a vision. There was lots of vision-sharing, and bringing different people together to get fast feedback. These were development-style activities, with the goal of collecting information quickly from others in order to make key decisions, test approaches, and adjust based on feedback. Information processing in work design is part of every job, it can be demanding, especially when Tamryn’s hours were 18 hours a day or overnight if needed.

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Growth and work design changes

As CORE developed, Tamryn’s job changed to free up more of her time to focus on building more impactful partnerships and build resources to empower new enterprises and getting big players in this space to be open to new enterprises.They’re goal is tocreate and grow start-ups that don’t remove or push out the big players. Emma and Sophie now handle communications, events, membership, and skills development programming at CORE. Although they generally wear multiple hats in the organisation, the team of three has a clear sense of who is responsible for what--something called role clarity in the work design literature.

An all-female team

It’s rare in mining and in start-ups to have an all-female team at the top of the organization. Now that Tamryn has a baby, ensuring that her work is extremely efficient and very closely tied to strategic objectives, is nonnegotiable. Tamryn can no longer work the 18 hour days. She’s able to get childcare for a few hours at a time so she can be with her son every day and still be in the office.  Every hour counts.

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Weaving work and life into each other

For Tamryn, the term “work/life balance” is a misnomer because there is little separation between the two.

“I don’t think the word “job” is useful anymore and I would like to see that vernacular change. The term “job” represents this archaic idea that doesn’t exist anymore. I don’t think it means a lot to students coming out of universities. Now work is so much more flexible and so much more beyond all the restrictions and structure that comes with a job. It’s more about self-direction.”

All in all, Tamryn rates her work 10 out of 10 because she doesn’t have a difference between a Monday and a Sunday.

“I’m never looking desperately forward to the weekend. If I wake up three days in a row thinking I don’t want to be doing this. Then something’s seriously wrong, especially in a society where we have choice.”

When work and life are intertwined, it makes sense that you want to use your freedom of choice to create work that’s meaningful and holds great significance.

A little more...

Will technology and automation make me redundant?

The mining sector needs to foster collaboration to keep up with the rapid technology advances that are set to change the work and work design of professionals in the industry.  Fear of technology and automation is not part of anything Tamryn is building. “In some sense, if you have a fearful mindset, then you have already lost.” At CORE, employees are supported and motivated to learn new skills to adapt to the challenges and complexities posed by new mining technologies. Tamryn says the future is going to shift work. The tools she uses in her job to communicate ideas, share information on projects, and track the business cycle, are all recent technologies. What’s more, is that she doesn’t see them as added job demands to learn, because they’re intuitive and she hasn’t needed any sort of training to make use of them. “It is conceivable to automate something to do my job and make me redundant, but no, I’m not worried and I’m not afraid.  I’ll just do something else.”

Meangingful work

In the mining and energy sector, organizations like CORE can have powerful economic impacts, providing meaningful work. “I can see people’s connection and see people develop from those connections. When the network grows there is a real sense of, “Oh my goodness we’re alive. We’re makers and creators.” I feel that level of thrill of creative expression that I imagine musicians and artists may feel when they create their works of art. I don’t necessarily need to be connected to the network myself in order to feel motivated and inspired by its growth.”

Hollywood Private Hospital - Central Sterile Services Department

Diane: "This is one of those jobs that no one really knows exists. We are responsible for the sterilizing of thousands of instruments that are used in the hospital. The work can be intense and stressful. It’s fast-paced with a multitude of demands when all the hospital theatres are working. Our department is a very important part of the hospital.

I like knowing that I’m doing something important for patients. I love overseeing the team and the adrenalin buzz of this work - there is often pressure of time and the need to juggle priorities.

Sterilising requires strict quality control and an efficient electronic monitoring and tracking system. Here, we work to the gold standard (AS 4187). There are forty staff, twenty of whom have been here for twenty plus years. They are highly professional.

We rely on teamwork. The safety of our patients is paramount. We have a big responsibility to make sure each instrument is working properly, sterilized thoroughly and placed in packs ready for the surgeons to use. Great concentration is required.  It’s very rewarding. I try not to make mistakes, but when I do I learn from them. Our team is made up of good people. We work hard and we have fun together."

Barbara: "I’ve been here for ten years. It’s a friendly team and we distribute supplies throughout the hospital, so we mix with staff on the different wards. When it’s busy others come to help, so I feel very supported by the team.

I like the variety in this work. We change the wards we work with every couple of years. In that way we get to know other people around the hospital. When you get the products to the nurses they really appreciate it, and the patients get what they need. We are also given shares in recognition of our work for the company that owns the hospital."

Chaitali: "I have a Masters degree in Botany, in plant tissue culture. I did a sterilizing course and moved to CSSD. There is a lot of knowledge involved. We work closely with the nurses, and have to understand the supply and demand ratio as well as instrument sterilization processes.There are different people working here. We work as a team and that makes it better for the patients and the surgeons."