The importance of co-design in women’s health interventions

By Gayatri Koshy, Head of mHealth

Despite best intentions, many health solutions fail to achieve their goals because the design process doesn’t involve target users. Not paying enough attention to the end-user in the design process almost inevitably results in a gap between what the solution offers and what participants need.

That’s why co-design is so important. Actively involving users during the design of health innovations ensures their needs are met.

Co-design is a collaborative process in which key stakeholders such as patients, healthcare professionals and consumer groups work together to develop user-centred services.

It is particularly important when it comes to women’s health.

Co-design and women’s health

Women’s health is affected by entrenched social and structural inequalities. Traditional gender roles and expectations often prevent women from accessing health services.

A survey we carried out among more than 1,000 participants found that more than 40% of UK women had too little time and energy to try and improve their health. When it comes to women with three or more children, that figure rises to half.

Low health literacy further impacts women’s health outcomes and puts greater pressure on services (Shieh and Halstead 2009; Corrarino 2013). Structural inequalities also affect the availability and quality of health services for women.

This means that women’s health often gets neglected resulting in longer-term health issues. Using co-design in health interventions can help mitigate some of the effects of existing social inequalities on healthcare demand and supply. How?

Co-design tackles complexity

The causes of health issues are invariably complex. For example, the problem of low birthweight babies in India isn’t just because of high rates of anaemia amongst pregnant women. There are also the social and cultural reasons why women don’t access antenatal care and why adolescent girls in India suffer from poorer nutrition than boys.

Co-designing health interventions in collaboration with pregnant women, their families and health professionals can help uncover the various layers to a problem. This collaborative process pinpoints the key causes of any issue that the intervention can then directly tackle.

Co-design aids inclusivity

Too often health interventions are designed for women as a homogenous group without understanding their differences.

We know that certain communities are less likely to interact with health services for a range of reasons.

UK ethnic minority women are 10 times more likely than their White British peers to avoid going to their GP due to fear of embarrassment or judgment (CRUK, 2019). Mistrust in the NHS due to previous bad experiences resulted in lower uptake of the Covid-19 vaccine amongst UK’s Black and ethnic minority population (Acharya et al. 2021).

Involving a diverse range of groups in the design phase makes health interventions more inclusive. The co-design process allows innovators to hear the voices and perspectives of those who may traditionally be excluded.

Co-design helps overcome knowledge gaps by valuing lived experience

A gender data gap exists across a whole range of sectors, including health, along with a knowledge gap in medical research (Criado-Perez, 2019; Dusenbury, 2019).

Women are typically underrepresented in clinical trials which means we don’t know enough about how women may experience a condition differently to men and how their symptoms are different.

Additionally, women’s differing hormonal states and cycles are rarely considered. So, when women do access care, they are faced with a health system that lacks the know-how and understanding required to cater to their needs. For example, women are 50% more likely to be misdiagnosed after having a heart attack due to poor knowledge of female-specific symptoms (BHF, 2021).

So how do you design effective health interventions for women when there is a lack of knowledge and data? This is where the co-design method comes in. End-users are empowered to contribute to the design of the intervention based on their lived experiences. The sharing of personal stories by women from diverse backgrounds can help fill gaps in knowledge.

Co-design shifts the power dynamic

Traditionally patients and service users are passive recipients of care that is practitioner-driven rather than woman-centred. Patients may then not fully understand the care and advice they’re given (Pheland et al. 2015).

If women play an active role in designing services, they will feel more meaningful and relevant. Research has shown that co-designed health services increase patients’ satisfaction with care and adherence to treatment (Elg et al. 2012).

How to do co-design well

For co-design to be effective in improving services and health outcomes, it needs to be:

Collaborative: Co-design involves actively working together with users in an equal partnership between all stakeholders. No one group should set the agenda and direction of the process.

Inclusive: People with diverse experiences and perspectives contribute to the process of understanding the problem, enabling previously excluded voices to be heard and valued.

Problem-led: Co-design should always start with the problem, looking at it from all angles. The solution should emerge after the problem and the needs and perspectives of all stakeholders are examined.

Empowering: The process should give voice to all participants and their experience. All participants should feel like they have the power to affect the outcome of the collaboration.

Co-design activities typically involve workshops, interviews and surveys; ideally a combination of these, such as workshops with interviews (Sanz et al. 2021). Researchers should also try to combine sessions involving one target group (such as patients) with mixed sessions involving different target groups (for example, patients and health professionals). Prototype solutions should also be tested with all users.

There are surprising benefits to online workshops, as those carried out during the pandemic demonstrate. The maternity service at Imperial College Healthcare NHS Trust found that the online space was more democratic, helping to flatten hierarchies and give voice to all participants via breakout rooms, polls, chat and hand-raising tools (Das and Cruickshank 2021).

Potential issues with co-design

While the benefits of co-design are widely understood, the involvement of users is still at low and often tokenistic levels (Slattery et al 2020; Lloyd et al. 2021).

Co-design can be complicated as it involves a range of participants with different concerns. Identifying the right people, steering them through the process, managing their expectations and getting the best out of them requires a good deal of expertise, time and resources (Maguire and Britten 2018; DeCamp et al. 2020; Ekezie et al. 2021).

If not done right, co-design can cause further issues. For example, if the process is not sufficiently inclusive this can further marginalise already under-represented people. Even the location for the process can create a power imbalance. A hospital setting can make non-health professionals feel alienated (Moll et al. 2020; Farrington 2016).

The future of co-design

One of the priorities of the first government-led national women’s health strategy for England is to place women’s voices at the centre of their health and care. Co-designing health interventions and services for women with women has never felt more urgent in closing the gender health gap.  But it can be improved by more researchers sharing their co-design knowledge and experiences with each other. And as the method continues to evolve it needs to respond to changing circumstances which, as the pandemic has shown, can add greater complexity to an already complex process.

Gayatri is the Head of mHealth at Thrive. With a Master of Public Health (MPH) degree, she has extensive experience working in global health projects as well as national level programmes such as India’s National AIDS Control Programme.

Here at Thrive, we work with brands, partner agencies, governments and charities who want to transform lives and societies for good.

Download our free white paper on the link below to learn how femtech and other digital platforms can overcome barriers to health access for women:

References

Acharya A et al. (2021) COVID-19 vaccinations among Black Asian and Minority Ethnic (BAME) groups: Learning the lessons from influenza. International Journal of Clinical Practice. https://doi.org/10.1111/ijcp.14641

British Heart Foundation (2019). Misdiagnosis of heart attacks in women. [online] Bhf.org.uk. Available at: https://www.bhf.org.uk/informationsupport/heart-matters-magazine/medical/women/misdiagnosis-of-heart-attacks-in-women.

Cancer Research UK. (2019). Ethnic minority women face more barriers to seeing their GP. [online] Available at: https://www.cancerresearchuk.org/about-us/cancer-news/press-release/2019-11-12-ethnic-minority-women-face-more-barriers-to-seeing-their-gp

Corrarino J (2013) Health literacy and women’s health: challenges and opportunities. J Midwifery Womens Health. 58(3):257-64. doi: 10.1111/jmwh.12018.

Criado-Perez C (2019) Invisible Women: Exposing Data Bias in a World Designed for Men. Chatto.

Das S and Cruickshank A (2021) ‘Co-design during a pandemic: the Antenatal Big Room’. https://q.health.org.uk/blog-post/co-design-during-a-pandemic-the-antenatal-big-room/

DeCamp M, Brewer SE, Dukhanin V (2020) Patient, public, consumer, and community engagement: from consucrat to representative comment on “The Rise of the Consucrat”. Int J Health Policy Manag. 2020;15:1.

Dusenbury M (2019) Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. HarperCollins.

Ekezie W, Routen A, Denegri S, Khunti K. (2021) Patient and public involvement for ethnic minority research: an urgent need for improvement. J R Soc Med. 2021;24:141076821994274.

Elg M et al. (2012) Co-creation and learning in health-care service development. J. Serv. Manag., 23 (3) (2012), pp. 328-343

Farrington CJ (2016) Co-designing healthcare systems: between transformation and tokenism. J R Soc Med. 2016;109(10):368-371.

Lloyd N, Kenny A, Hyett N (2021) Evaluating health service outcomes of public involvement in health service design in high-income countries: a systematic review. BMC Health Serv Res [Internet]. 2021;21(1):364.

Maguire K, Britten N (2018) ‘You’re there because you are unprofessional’: patient and public involvement as liminal knowledge spaces. Sociol Health Illn. 2018;40(3):463-477.

Moll S, Wyndham-West M, Mulvale G, et al. (2020) Are you really doing ‘codesign’? Critical reflections when working with vulnerable populations. BMJ Open. 2020;10(11):e038339.

Ni She and Harrison (2021) Mitigating unintended consequences of co-design in health care. https://onlinelibrary.wiley.com/doi/full/10.1111/hex.13308

Phelan SM et al. (2015) Impact of weight bias and stigma on quality of care and outcomes for patients with obesity. Obes. Rev., 16 (4) (2015), pp. 319-326

Sanz MF, Acha BV, García MF. Co-Design for People- Centred Care Digital Solutions: A Literature Review. International Journal of Integrated Care. 2021;21(2):16. DOI: http://doi.org/10.5334/ijic.5573

Shieh C and Halstead J (2009) Understanding the impact of health literacy on women’s health. J Obstet Gynecol Neonatal Nurs. Sep-Oct 2009;38(5):601-10; quiz 610-2. doi: 10.1111/j.1552-6909.2009.01059.x.

Slattery et al (2020) Research co-design in health: a rapid overview of reviews. https://health-policy-systems.biomedcentral.com/articles/10.1186/s12961-020-0528-9


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