Over the past six months I have noticed more Health IT companies and healthcare organizations using the term patient co-designed when referring to new product enhancements and internal projects. “This product was co-designed with patients” was especially prevalent in the presentations at the eHealth Conference I attended in Toronto (btw – those sessions were great).
While I have no doubt that patients were indeed involved in the design process, what struck me is the different depth of that involvement.
Different Depths of Patient Co-Design
One company, who shall remain nameless, simply showed their near-final product to a group of patients and solicited their feedback. They ended up incorporating the top 5 patient suggestions. I don’t want to judge this company harshly, because at least they got patients involved. There are countless companies and healthcare organizations who don’t even bother to ask patients for their input.
In contrast, there was another health IT company and a healthcare provider who involved a select group of patient representatives from the very start of their project. Over a period of months, these patients were asked to give their input and suggestions on the various iterations of the product the teams were working on. In both cases, these patients were compensated for their time.
It is clear that the level of patient involvement is very different in these examples…which is what got me thinking about the need for a standardized definition of patient co-design.
Standardizing Patient Co-Design
In the conference world, there is a Patients Included designation that details the exact criteria that organizers must meet in order to label event as such. It is clear, unambiguous, and relatively simple to achieve. I feel we need the same approach for products and processes.
We need to standardize what it means for a company or healthcare organization to claim that something is co-designed with patients. If we don’t, we risk watering down the term and relegating it simply to a marketing phrase. That would be sad.
The Institute for Healthcare Improvement (IHI) posted this definition of patient co-design in 2017:
Co-design involves the patients in the design process and works with them to understand their met and unmet needs. Veterans [as in patients of the VA] then help the health care design team come up with different opportunities and test them to determine their desirability and feasibility in practice.
Alberta Health Services published a guideline for understanding co-design that defines it like this:
Co-design actively involves multiple stakeholders (internal and external) in the planning to improve systems and services. It is a participatory, reflective and adaptive process centering on participants as experts. It decentralizes decision-making and power to facilitate transformation. The approach creates environments and develops products that are more responsive and appropriate to the needs of all stakeholders. In “true co-design” stakeholders: (1) Participate, as equals, in decision-making (2) Are involved in all stages of the co-design process.
Patient Co-Design Criteria
So what should the criteria be for something to be considered co-designed by patients? Here are some of my thoughts:
- Patients should make up at least 25% of the design team (minimum of 1)
- The recommendations and suggestions from the patient representatives should be documented, signed off by the patients, and made available upon request by future patients involved in other projects or by internal staff who wish to see how patient input was or was not incorporated.
- Patient participants should be representative of the actual patient population that will use the product or be affected by the process. It makes no sense, for example, to have an able-bodied patient join in the design of accessibility entrances for the new clinic.
- Patients should be reasonably compensated for their time and input (an uber and coffee is insufficient)
- At least one person on the project team should be designated as the primary patient liaison and be responsible for communicating with the patients involved
I can’t wait to hear additional ideas from the HCLDR Community on the next tweethcat. Join us on Tuesday June 13th at 8:30pm (for your local time click here) when we discuss:
- Q1 When you see something that is “patient co-designed” what does that mean to you?
- Q2 Is there a need to standardize the definition and criteria before something can be designated as “patient co-designed”?
- Q3 What suggestions do you have for the criteria that should be met before something is considered “patient co-designed”?
- Q4 Does a central organization or association need to be the arbiter of a “patient co-designed” designation, or could it be a voluntary designation like Patient Included is?
Resources
“Understanding Co-Design”, Alberta Health Services, January 2020, https://www.albertahealthservices.ca/assets/about/scn/ahs-scn-pfe-understanding-codesign.pdf, accessed 10 June 2023
“Co-Design — With Your Patients and Your Staff”, IHI, 2 March 2017, https://www.ihi.org/communities/blogs/co-design-with-your-patients-and-your-staff, accessed 10 June 2023
Feeley, Derek. “What Health Care Leaders Need to Know about Patient-Centered Co-Design”, IHI, 20 October 2017, https://www.ihi.org/communities/blogs/what-health-care-leaders-need-to-know-about-patient-centered-co-design, accessed 10 June 2023
Ward, Marie E, et al. “Using Co-Design to Develop a Collective Leadership Intervention for Healthcare Teams to Improve Safety Culture”, International Journal of Environmental Research and Public Health, 5 June 2018, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6025638/, accessed 10 June 2023
Scott J, Heavey E, Waring J, et al. “Healthcare professional and patient codesign and validation of a mechanism for service users to feedback patient safety experiences following a care transfer: a qualitative study”, BMJ Open, 2016, https://bmjopen.bmj.com/content/6/7/e011222, accessed 10 June 2023
“Co-design: What does it really look like in practice?”, Australasian Institute of Digital Health, 30 June 2022, https://digitalhealth.org.au/blog/co-design-what-does-it-really-look-like-in-practice/, accessed 10 June 2023
Fylan, Beth et al. “Using experience-based co-design with patients, carers and healthcare professionals to develop theory-based interventions for safer medicines use”, Research in Social and Administrative Pharmacy, 2021, https://www.sciencedirect.com/science/article/pii/S1551741121002060, accessed 10 June 2023
Image Credit
Photo by Christina Morillo: https://www.pexels.com/photo/women-colleagues-gathered-inside-conference-room-1181622/
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