Lived experiences transforming healthcare

Using lived experiences to help design and implement better services in healthcare.

People's personal experiences are incredibly potent when introduced into the design and delivery of health services.

Lived experience has the power to support meaningful change that results in sustainable transformation - after all, knowing something from the inside out is a very different experience than knowing something about that subject, leading to a richer understanding by incorporating a first-person view.

But it's not just about having that first hand experience. There are many other reasons why our healthcare leaders are seeking more measurable participation by people with a lived experience in service transformation. Some considerations include:

  1. Economic viability. Uptake in services (particularly digital) often correlates to economic viability i.e. if no one uses a new system it doesn’t offer efficiency gains or cost savings. Therefore, implementing or changing services without the people that use them increases the risk of failure or low level of spread.

  2. Human rights. Empowerment and participation by people with a lived experience is essential when we consider agendas like human rights and equality.

  3. Greater impact. When lived experience perspectives are included in planning, design, implementation and evaluation, the impact of products and services (as well as the ability to develop innovative approaches) are vastly improved.

Including people in the design process makes sense. Co-designing services is far more likely to be efficient in the long run, especially if we involve people at the start of the design phase and throughout delivery as it prevents having to fix issues that could have been identified earlier.

Building a strategy that informs how to gather these experiences continuously and at scale is a challenge. A strategy should also consider how that data can be used effectively so current and future products and services reach the target population and their needs.

There are some big advantages of living in a multimedia age as it does offer some fantastic opportunities to engage people, particularly when combined with tactics to address inclusion. There are now more channels and tools than ever to collect public and patient experiences and to bridge the creative gap between the lived experiences and meaningful change.

The Healthwave team have been working alongside people innovating in healthcare, applying lived experience data to digital transformation projects, public and patient engagement initiatives, co-design sessions, strategic planning, communications campaigns, product design workshops, systematic reviews and a whole lot more.

Lived experience data and social determinants of health

It doesn’t take much reading to realise the contribution of unmet social needs, including income, housing, food, employment, education, and experiences of discrimination - to poor healthcare experiences, decreased healthcare access, and adverse health outcomes.

Applying lived experience data to ignite social determinants of health programmes should be a focus for many public health departments. For example, it is well known that the three most important factors in determining digital inclusion are age, income and educational attainment. Two of these factors are not health related but social, i.e., income, and level of education. These factors contribute to our experience of health, much like our housing situation or the quality of life in our neighbourhood. But it is often much harder to capture these types of experiences with traditional research methods like surveys. Richer, qualitative data helps us obtain granular information, at a local level that can be used to represent the opinions of service users, not just about medical matters but also in the wider social determinants of health.

Social determinants of health are key to understanding how to successfully deploy solutions when a team is ready to rock and roll a new service. Some pitfalls we often see are:

  • launching before understanding the impact on users.

  • using free surveys which deliver slow results, irrelevant answers through asking the wrong questions.

  • using engagement processes to inform culture change rather than focusing on changing culture before inconveniencing your user population.

  • being unaware of how to go deeper into more complex subjects that are relevant to more niche citizen groups, i.e. wide and shallow surveys are vital but deep and narrow qualitative insights can be a mandatory next step.

We help organisations drive engagement to deliver meaningful change that results in sustainable transformation, helping organisations navigate common pitfalls and use lived experience data creatively and with impact.