The growing public thirst for knowledge about research and health interventions can be used to benefit public health. The transition to the public doing research for themselves seems inevitable. It is already happening, individuals who thought about how to meet a need have partnered with researchers to deliver 3D limbs, pancreatic cancer tests, inexpensive microscopes made of paper and brain valves to relieve cranial pressure.
“The patient is not an entity, but a person and that person can be a medical problem solver (Amy Price, 2015)”. Common meanings develop through shared motivations, education and interaction. The same promise is available for discovery learning for change management in online clinical trials. The public at large is the end user of any healthcare intervention thus EAIN-3898 Stanford University PL: Lawrence Chu, MD, MS making it imperative that evidence guiding the use of healthcare interventions is relevant and useful to them.
Researchers, Clinicians and Patients can grow together by providing scaffolding support to merge their worlds. Scaffolding examples can be observed in the workplace where a scaffold is used provide strength and structure during construction. Mountain climbers use scaffolding through the application of rock-climbing holds. These increase the climber’s safety moving downwards and extend the climber’s reach. In the behavioral sciences it is reported that individual and group learning systems will adapt dynamically and according to the needs of the task(s) and the nature of the group in which the knowledge is constructed. A researcher named Vygotsky found that this scaffold effect could occur through exposure to knowledgeable community members with higher capabilities. He reported those who learned through this process are primed to provide a scaffold for others.
A beautiful example of scaffolding is the Hole-in-the-wall Education Limited (HiWEL) project, (Ted Talk by Sugata Mistry) where computers were placed inside selected village walls in rural India and curious but previously illiterate children taught themselves and each other to read, learn the computer, and acquire math and science skills. We can use the same concepts to grow excellence health care and medical research. Patients as experts on their own care are a powerful force for influencing health care and changing policy as a patient centered co-produced service rather than a system driven artifact.
Options for involving the public in all aspects of healthcare and medical research have until now been limited in approach as they tend to focus on patient values and experience rather than scaffolding through active adoption and application of public priorities in health care and medical research. In this course you will meet patients who have hacked their own medical devices to access the information they need for self-care and you will hear from the researchers and clinicians who support them. We hope these examples will inspire you to co-production in healthcare and research.
Content for this reading was adapted from the paper Public Led Online Trials and Participatory Action Research | Why Do We Need Them (available here) and from the article, Developing tools for practice that support patient choice
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