Authors: Sara Riggare, Therese Scott Duncan, Maria Hägglund.
Introduction
In the Merriam-Webster dictionary, ‘advocacy’ is defined as: “the act or process of supporting a cause or proposal”. The same source defines ‘activism’ as: “a doctrine or practice that emphasizes direct vigorous action especially in support of or opposition to one side of a controversial issue”. This post is a follow-up to a pre-congress course on advocacy and activism that was given at the 5th World Parkinson Congress (WPC) in Kyoto June 4-7 2019 (Scott Duncan, Raphael, et al. 2019). The focus of the course was on the more action-oriented concept of activism and the course was based on research from Karolinska Institutet in Stockholm, Sweden. The research has resulted in a framework outlining some of the different roles patients can take when dealing with their health issues. The purpose of this post is to provide a background for and description of the framework as well as outline some of the ways it can be used.
Background
The traditional role of patients as being passive and blindly following the advice from healthcare is changing (deBronkart 2015). Patients are increasingly accessing and using online information to educate themselves (Riggare 2018), also in Parkinson’s disease (PD) (Riggare and Unruh 2015; Riggare, Höglund, et al. 2017; Riggare and Hägglund 2018; Riggare, Unruh, et al. 2017).
The work described in this draft paper has been made possible through project funding from Vinnova, the Swedish Governmental Agency for Innovation Systems. The project “Lead Patients – a new resource for health”[1] (in Swedish: “Spetspatienter – en ny resurs för hälsa) has been running 2017-2019 and has been described in a report (in Swedish) (Krohwinkel, Riggare, and Conning 2019).
The framework is based on data from semi-structured interviews conducted in the Lead Patient project in Sweden. The first generation of e-patients[2] were equipped, empowered, enabled, and engaged patients and informal caregivers, who used the Internet for finding information or for communication, to address a personal need. There is however a lack of knowledge about e-patients’ driving forces for engaging in their own health and care. This knowledge could be used to include patients’ care experiences to improve the care delivery process. The interview study therefore aimed to explore the driving forces of e-patients to be actively engaged in their health and care.
An online advertisement resulted in 67 individuals expressing an interest to participate. From these, 15 respondents (10 patients with different chronic diseases and 5 informal caregivers) were purposefully selected to guarantee a wide representation regarding age, gender, chronic condition, type of engagement and geographical distribution. Data were analyzed according to the Framework Analysis approach, using the three concepts of the Self Determination Theory, namely autonomy, relatedness, and competence, as a starting point. The interview study concluded that the driving forces of patients can be described as a need for being actively engaged in their health and care. Furthermore, an internal driving force of feeling relatedness was identified. This is connected to the external driving forces; where the main needs were identified to be working for an adaptable healthcare system and to achieve communication with peers (Scott Duncan, Riggare, et al. 2019). Based on the interview study, we have developed the framework described below.
Description of framework
The framework currently comprises 12 + 1 different roles/competences/skills, see below. A person often takes on or uses several roles/competences/skills at the same time and alters between roles/competences/skills in different situations and/or contexts. Something they all have in common is …
Selfcare Expert
does what they can to learn about their health and wellbeing and works to improve it.
Activist
This is a person who uses their works for changes in policy and practice related to their health and healthcare needs.
Communicator
writes and/or speaks about their own health experiences in conferences and meetings and/or articles, blogs and social media.
Entrepreneur
builds companies or organizations from their experiences with health and healthcare needs.
Innovator
creates or has ideas about new solutions based on their health and healthcare needs.
Mentor
shares their knowledge and experiences to teach others.
Tracker
self-monitors health issues
Hacker
addresses health issues through the use of technology.
Knowledge Seeker
stays updated on the latest scientific articles and evidence.
Patient Researcher
uses scientific methods to investigate their health issues and/or partners with established academic researchers.
Healthcare Partner
creates and manages partnerships with healthcare professionals.
Healthcare Coordinator
manages and coordinates multiple healthcare contacts for their health issues.
?
is added to illustrate that we think that the framework will not remain static, it is likely to change over time, as roles/competences/skills are added or become irrelevant.
Examples of ways to use the framework
We have used the framework in Sweden as a starting point for discussions and workshops with patients and patient organizations, healthcare organizations and other publicly funded organizations, governmental authorities, companies. Preliminary results indicate that it is helpful for promoting a more nuanced discussion around patient activism, irrespective of diagnosis. We believe that it can be used to further explore different aspects of patient activism, both in specific diseases, such as PD, or across diagnoses. We also think that the content this framework is not static, roles/competences may be added or withdrawn, while the structure and potential uses of the framework are likely to remain the same.
Videos describing the framework
Below are two videos in English by David Sangster, where he captures in an excellent way the characteristics of the framework. The first one is a shortened version of the second.
References
deBronkart, Dave. 2015. “From Patient Centred to People Powered: Autonomy on the Rise.” Bmj 350 (feb10 14): 3. https://doi.org/10.1136/bmj.h148.
Krohwinkel, Anna, Sara Riggare, and Helena Conning. 2019. “Spetspatienter – En Ny Resurs För Hälsa (in Swedish).”
Riggare, Sara. 2018. “E-Patients Hold Key to the Future of Healthcare.” Bmj 846 (February): k846. https://doi.org/10.1136/bmj.k846.
Riggare, Sara, and Maria Hägglund. 2018. “Precision Medicine in Parkinson’s Disease – Exploring Patient-Initiated Self-Tracking.” Journal of Parkinson’s Disease Pre-press (Pre-press): 1–6. https://doi.org/10.3233/JPD-181314.
Riggare, Sara, Pär J Höglund, Helena Hvitfeldt Forsberg, Elena Eftimovska, Per Svenningsson, and Maria Hägglund. 2017. “Patients Are Doing It for Themselves: A Survey on Disease-Specific Knowledge Acquisition among People with Parkinson’s Disease in Sweden.” Health Informatics Journal. https://doi.org/10.1177/1460458217704248.
Riggare, Sara, and Kenton T Unruh. 2015. “Patients Organise and Train Doctors to Provide Better Care.” Bmj 351 (November). https://doi.org/10.1136/bmj.h6318.
Riggare, Sara, Kenton T Unruh, Jasmine Sturr, Josefa Domingos, Jonathan A Stamford, Per Svenningsson, and Maria Hägglund. 2017. “Patient-Driven N-of-1 in Parkinson’s Disease: Lessons Learned from a Placebo-Controlled Study of the Effect of Nicotine on Dyskinesia.” Methods of Information in Medicine56 (MethodsOpen): 123–28.
Scott Duncan, Therese, Karen G. Raphael, Tim Hague, and Martin Taylor. 2019. “Pre-Congress Course on Advocacy and Activism: ‘Activism, Awareness and Roles Patients Play.’” In Abstracts of the 5th World Parkinson Congress 2019. Journal of Parkinson’s disease.
Scott Duncan, Therese, Sara Riggare, Sabine Koch, Lena Sharp, and Maria Hägglund. 2019. “From information seekers to innovators: Qualitative analysis describing experiences of the second generation of E-patients” (link)
Thank you for creating and sharing this framework!
One of the challenges of building a movement for change is trying to explain what’s going on to newcomers, skeptics on the verge of changing their minds, and other people we want to convince to join us.
Your framework will help two major groups:
1) Spetspatients can see themselves and the various roles they play. They can consider how to add more skills and roles, if they want to expand how they pursue health.
2) Clinicians, scientists, funders, policymakers (add your favorite powerful entity here) can deepen their understanding of the diversity of contributions that people formerly known as “laypeople” can make to health care and discovery.