Patient Voice + Digital Health

This week Amy Ma @Ctzen_Improver will be the guest host and moderator for the #hcldr tweetchat. She has graciously stepped forward. Joe Babaian and I are both away on Tuesday June 7th and neither of us will be able to online at 8:30pm ET.

Thank you Amy for being so helpful. Joe and I are grateful to you…and the community is too.

Below is a blog that was co-created with input from Amy.

Over the past year, there has been a noticeable increase in the use of the term “co-create”. Mainstream companies are “co-creating” solutions and products with customers. It may seem like a new approach, but really it’s just listening to your customers and bringing them into the design process. When you do that, amazing things happen – products and services actually get used!

Co-creating has yet to become a buzzword in healthcare. Instead, we have “patient centered” and “patient engagement”. It is rare to see that something was “co-created with patients”…but I think it’s time that we do.


Gartner defines co-creation as:

A collaborative initiative between companies and their customers enabling the joint design of products and services. These initiatives include the creation of goods, services and experiences, amplifying the process via the inclusion of client intellectual capital.

In a digital healthcare context this means working with patients and clinicians (who are the customers/users of digital health solutions) to create products and solutions.

Not a Great Track Record

Traditionally, digital health companies have not don’t a great job a co-creating. Just look at the first generation of EHRs – they were clearly not designed with clinicians in mind. Had companies asked doctors and nurses what they wanted, I’m 100% sure they would not have answered “I would like a system that forces me to do 100 clicks to enter information while my back is turned to the patient I am supposed to be spending time with.”

It is even worse when it comes to getting and incorporating the voice of patients in the design of digital health solutions.

Organizations such as Savvy Coop and WEGO Health are trying to help in this area by making it easier for companies to find and engage patients. Both of these organizations have done the hard work of attracting patient populations and have the mechanisms in place to motivate them to partner with companies.

Volunteer or Paid

One challenge when it comes to including patients in the design of solutions is how to compensate them for their time and input. Ideally, companies would reimburse patients at a competitive rate – one that is linked to the value of their input. In practice, however, this is often not the case…especially with small startups.

Is there a way for companies to engage with patients without paying them? Is that even something they should consider? Or is the risk of backlask too great? Yet on the other hand, is this what is stopping more companies from engaging with patients?

A standard?

In the world of healthcare conferences, there is a “patients included” designation. It is a voluntary standard which when adhered to, allows a conference to bill itself as “patients included”. This designation signals to attendees and exhibitors that the conference has worked at making their event accessible to patients and included their input into the overall design.

Could something similar work for digital health solutions? Could a standard be developed so that companies can strive towards including patients in a meaningful way and be able to show the world that they did.

Join the next #hcldr weekly tweetchat on Tuesday June 7th at 8:30pm ET (for your local time click here), when the community will be discussing the following with guest host Amy Ma @Ctzen_Improver:

  • T1 With respect to digital health solutions, where is the patient voice needed most (aka where is patient voice missing)?
  • T2 Is it feasible for companies to try and recruit volunteer patients to provide input into their solutions or should they expect to have to pay patients?
  • T3 We have “patients included” designations for healthcare conferences. Would something similar for digital health solutions work?
  • T4 What criteria would you like to see for a digital health solution to be considered “patients included” or “co-created with patients”?


Stock, Christiane, et al. “Editorial: How can We Co-Create Solutions in Health Promotion With Users and Stakeholders?”, Frontiers in Public Health, 8 December 2021,, accessed 5 June 2022

Rezaei Aghdam, Atae, et al. “Improving the Theoretical Understanding Toward Patient-Driven Health Care Innovation Through Online Value Cocreation: Systematic Review”, Journal of Medical Internet Research, 24 April 2020,, accessed 5 June 2022

Makhni, Sonya. “Co-Creation in Health Systems Design”, AMA Journal of Ethics, November 2017,, accessed 5 June 2022

Image Credt

Photo by ThisIsEngineering:

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