My publications

My profile page on ResearchGate: link

PhD thesis

Scientific publications

2024

  • Richards, D. P., Mulhall, H., Belton, J., De Souza, S., Flynn, T., Haagaard, A., Hunter, L., Price, A., Riggare, S., Tufte, J., Twomey, R., & Khan, K. M. (2024). Co-creating and hosting PxP: A conference about patient engagement in research for and by patient partners. Research Involvement and Engagement, 10(1), 77. https://doi.org/10.1186/s40900-024-00603-0
  • Wannheden, C., Hagman, J., Riggare, S., Härenstam, K. P., & Fernholm, R. (2024). Safety-­netting strategies for primary and emergency care: A codesign study with patients, carers and clinicians in Sweden. BMJ Open, 14(e089224). https://doi.org/10.1136/ bmjopen-2024-089224
  • Ajayi, O., Gee, P., Mulhall, H., Richards, D. P., & Riggare, S. (2024). Conferences led by patients facilitate democratic decision making in healthcare. BMJ, q1411. https://doi.org/10.1136/bmj.q1411
  • Dahlberg, M., Luckhaus, J. L., Hasson, H., Jansson, H., Lek, M., Savage, C., Riggare, S., & Wannheden, C. (2024). Why publish? An interview study exploring patient innovators’ reasons for and experiences of scientific publishing. Research Involvement and Engagement, 10(1), 54. https://doi.org/10.1186/s40900-024-00589-9
  • Filograna, R., Gerlach, J., Choi, H.-N., Rigoni, G., Barbaro, M., Oscarson, M., Lee, S., Tiklova, K., Ringnér, M., Koolmeister, C., Wibom, R., Riggare, S., Nennesmo, I., Perlmann, T., Wredenberg, A., Wedell, A., Motori, E., Svenningsson, P., & Larsson, N.-G. (2024). PARKIN is not required to sustain OXPHOS function in adult mammalian tissues. Npj Parkinson’s Disease, 10(1), 93. https://doi.org/10.1038/s41531-024-00707-0
  • Hägglund, M., Kharko, A., Bärkås, A., Blease, C., Cajander, Å., DesRoches, C., Fagerlund, A. J., Hagström, J., Huvila, I., Hörhammer, I., Kane, B., Klein, G. O., Kristiansen, E., Moll, J., Muli, I., Rexhepi, H., Riggare, S., Ross, P., Scandurra, I., Simola, S., Soone, H., Wang, B., Ghorbanian Zolbin, M., Åhlfeldt, RM., Kujala, S., & Johansen, M. A. (2024). A Nordic Perspective on Patient Online Record Access and the European Health Data Space. Journal of Medical Internet Research, 26, e49084. https://doi.org/10.2196/49084
  • Luckhaus, J. L., Clareborn, A., Hägglund, M., & Riggare, S. (2024). Balancing feeling ‘prepared’ without feeling ‘devoured’: A qualitative study of self‐care from the perspective of self‐empowered persons living with Parkinson’s disease in Sweden. Health Expectations, 27(2), e14027. https://doi.org/10.1111/hex.14027
  • Reinius, M., Al‐Adili, L., Riggare, S., Rodriguez, I. H., Stenfors, T., & Brommels, M. (2024). Assessing the perceived value of a user‐led educational intervention to support recovery in a Swedish psychiatric organization: A qualitative case study. Health Expectations, 27(3), e14064. https://doi.org/10.1111/hex.14064

2023              

  • Fernholm, R., Wannheden, C., Trygg Lycke, S., Riggare, S., & Pukk Härenstam, K. (2023). Patients’ and clinicians’ views on the appropriate use of safety-netting advice in consultations—An interview study from Sweden. BMJ Open, 13(10), e077938. https://doi.org/10.1136/bmjopen-2023-077938
  • Hägglund, M., Kharko, A., Hagström, J., Bärkås, A., Blease, C., Cajander, Å., DesRoches, C., Fagerlund, A. J., Haage, B., Huvila, I., Hörhammer, I., Kane, B., Klein, G. O., Kristiansen, E., Luks, K., Moll, J., Muli, I., Raphaug, E. H., Rexhepi, H., Riggare, S., Ross, P., Scandurra, I., Simola, S., Soone, H., Wang, B., Ghorbanian Zolbin, M., Åhlfeldt, RM., Kujala, S., & Johansen, M. A. (2023). The NORDeHEALTH 2022 Patient Survey: Cross-Sectional Study of National Patient Portal Users in Norway, Sweden, Finland, and Estonia. Journal of Medical Internet Research, 25, e47573. https://doi.org/10.2196/47573
  • Scott Duncan, T., Riggare, S., Bylund, A., Hägglund, M., Stenfors, T., Sharp, L., Koch, S., 2023. Empowered patients and informal care-givers as partners?—a survey study of healthcare professionals’ perceptions. BMC Health Services Research 23, 404. https://doi.org/10.1186/s12913-023-09386-8
  • Wannheden, C.; Riggare, S.; Luckhaus, J. L.; Jansson, H.; Sjunnestrand, M.; Stenfors, T.; Savage, C.; Reinius, M.; Hasson, H. A Rocky Road but Worth the Drive: A Longitudinal Qualitative Study of Patient Innovators and Researchers Cocreating Research. Health Expectations 2023. https://doi.org/10.1111/hex.13790.
  • Dahlberg, M.; Lek, M.; Castillo, M. M.; Bylund, A.; Hasson, H.; Riggare, S.; Reinius, M.; Wannheden, C. Objectives and Outcomes of Patient-Driven Innovations Published in Peer-Reviewed Journals: A Qualitative Analysis of Publications Included in a Scoping Review. BMJ Open 2023, 13 (6), e071363. https://doi.org/10.1136/bmjopen-2022-071363.

2022              

  • Duncan, T. S., Engström, J., Riggare, S., Hägglund, M., & Koch, S. (2022). Meeting the Burden of Self-management: Qualitative Study Investigating the Empowering Behaviors of Patients and Informal Caregivers. Journal of Participatory Medicine, 14(1). https://doi.org/10.2196/39174
  • Jansson, H., Stenfors, T., Riggare, S., Hasson, H., & Reinius, M. (2022). Patient lead users experience of the 19 pandemic: A qualitative interview study. BMJ Open, 12. https://doi.org/10.1136/bmjopen-2021-059003
  • Reinius M, Mazzocato P, Riggare S, Bylund A, Jansson H, Øvretveit J, Savage C, Wannheden C, Hasson H (2022) Patient-driven innovations reported in peer-reviewed journals: a scoping review. BMJ Open 12, (1) e053735. https://doi.org/10.1136/bmjopen-2021-053735

2021

  • Riggare, S.; Hägglund, M.; Bredenoord, A. L.; de Groot, M.; Bloem, B. R. Ethical Aspects of Personal Science for Persons with Parkinson’s Disease: What Happens When Self-Tracking Goes from Selfcare to Publication? Journal of Parkinson’s Disease2021, 11 (4), 1927–1933. https://doi.org/10.3233/jpd-212647.
  • Riggare, S.; Stamford, J.; Hägglund, M. A Long Way to Go: Patient Perspectives on Digital Health for Parkinson’s Disease. Journal of Parkinson’s Disease 2021, 11 (s1), S5–S10. https://doi.org/10.3233/JPD-202408.

2020

  • Riggare, S. Patient Researchers — the Missing Link? Nature Medicine 2020, 26 (10), 1507. Link to article.
  • Salmi, L.; Brudnicki, S.; Isono, M.; Riggare, S.; Rodriquez, C.; Schaper, L. K.; Walker, J.; Delbanco, T. Six Countries, Six Individuals: Resourceful Patients Navigating Medical Records in Australia, Canada, Chile, Japan, Sweden and the USA. BMJ Open 2020, 1–5. https://doi.org/10.1136/bmjopen-2020-037016.
  • Riggare, S.; Stecher, B.; Stamford, J. Patient Advocates Respond to ‘ Utilizing Patient Advocates …’ by Feeney et Al. Health Expectations 2020, No. May, 1–2. https://doi.org/10.1111/hex.13087.
  • Kraepelien, M.; Schibbye, R.; Månsson, K.; Sundström, C.; Riggare, S.; Andersson, G.; Lindefors, N.; Svenningsson, P.; Kaldo, V. Individually Tailored Internet-Based Cognitive-Behavioral Therapy for Daily Functioning in Patients with Parkinson’s Disease: A Randomized Controlled Trial. Journal of Parkinson’s Disease 2020, 10 (2), 653–664. https://doi.org/10.3233/JPD-191894.
  • Dorsey, E. R.; Omberg, L.; Waddell, E.; Adams, J. L.; Adams, R.; Ali, M. R.; Amodeo, K.; Arky, A.; Augustine, E. F.; Dinesh, K.; Hoque, M. E.; Glidden, A. M.; Jensen-Roberts, S.; Kabelac, Z.; Katabi, D.; Kieburtz, K.; Kinel, D. R.; Little, M. A.; Lizarraga, K. J.; Myers, T.; Riggare, S.; Rosero, S. Z.; Saria, S.; Schifitto, G.; Schneider, R. B.; Sharma, G.; Shoulson, I.; Stevenson, E. A.; Tarolli, C. G.; Luo, J.; McDermott, M. P. Deep Phenotyping of Parkinson’s Disease. Journal of Parkinson’s Disease 2020, 10, 1–19. https://doi.org/10.3233/jpd-202006.
  • Cenci, M. A.; Riggare, S.; Pahwa, R.; Eidelberg, D.; Hauser, R. A. Dyskinesia Matters. Movement Disorders2020, 35 (3), 392–396. https://doi.org/10.1002/mds.27959.

2019

  • Riggare, S.; Duncan, T. S.; Hvitfeldt, H.; Hägglund, M. “You Have to Know Why You’re Doing This”: A Mixed Methods Study of the Benefits and Burdens of Self-Tracking in Parkinson’s Disease. BMC Medical Informatics and Decision Making 2019, 7, 1–16. https://doi.org/10.1186/s12911-019-0896-7.
  • Duncan, T. S.; Riggare, S.; Koch, S.; Sharp, L.; Hägglund, M. From Information Seekers to Innovators: Qualitative Analysis Describing Experiences of the Second Generation of E-Patients. Journal of Medical Internet Research 2019, 21 (8), e13022. https://doi.org/10.2196/13022.

2018

  • Riggare, S.; Hägglund, M. Precision Medicine in Parkinson’s Disease – Exploring Patient-Initiated Self-Tracking. Journal of Parkinson’s Disease 2018, 8 (3), 441–446. https://doi.org/10.3233/JPD-181314.
  • Chu, L. F.; Shah, A. G.; Rouholiman, D.; Riggare, S.; Gamble, J. G. Patient-Centric Strategies in Digital Health. In Digital Health. Scaling Healthcare to the World; Rivas, H., Wac, K., Eds.; Health Informatics; Springer, 2018. https://doi.org/10.4324/9781410613479.

2017

  • Riggare, S.; Unruh, K. T.; Sturr, J.; Domingos, J.; Stamford, J. A.; Svenningsson, P.; Hägglund, M. 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 Medicine 2017, 56 (MethodsOpen), 123–128. https://doi.org/10.3414/ME16-02-0040.
  • Riggare, S.; Höglund, P. J.; Hvitfeldt Forsberg, H.; Eftimovska, E.; Svenningsson, P.; Hägglund, M. Patients Are Doing It for Themselves: A Survey on Disease-Specific Knowledge Acquisition among People with Parkinson’s Disease in Sweden. Health Informatics Journal 2017. https://doi.org/10.1177/1460458217704248.
  • Beck, C. A.; Beran, D. B.; Biglan, K. M.; Boyd, C. M.; Dorsey, E. R.; Schmidt, P. N.; Simone, R.; Willis, A. W.; Galifianakis, N. B.; Katz, M.; Tanner, C. M.; Dodenhoff, K.; Aldred, J.; Carter, J.; Fraser, A.; Jimenez-Shahed, J.; Hunter, C.; Spindler, M.; Reichwein, S.; Mari, Z.; Dunlop, B.; Morgan, J. C.; McLane, D.; Hickey, P.; Gauger, L.; Richard, I. H.; Mejia, N. I.; Bwala, G.; Nance, M.; Shih, L. C.; Singer, C.; Vargas-Parra, S.; Zadikoff, C.; Okon, N.; Feigin, A.; Ayan, J.; Vaughan, C.; Pahwa, R.; Dhall, R.; Hassan, A.; DeMello, S.; Riggare, S. S.; Wicks, P.; Achey, M. A.; Elson, M. J.; Goldenthal, S.; Keenan, H. T.; Korn, R.; Schwarz, H.; Sharma, S.; Stevenson, E. A.; Zhu, W. National Randomized Controlled Trial of Virtual House Calls for Parkinson Disease. Neurology 2017, 89 (11). https://doi.org/10.1212/WNL.0000000000004357.

2016

  • Dorsey, E. R.; Achey, M. A.; Beck, C. A.; Beran, D. B.; Biglan, K. M.; Boyd, C. M.; Schmidt, P. N.; Simone, R.; Willis, A. W.; Galifianakis, N. B.; Katz, M.; Tanner, C. M.; Dodenhoff, K.; Ziman, N.; Aldred, J.; Carter, J.; Jimenez-Shahed, J.; Hunter, C.; Spindler, M.; Mari, Z.; Morgan, J. C.; McLane, D.; Hickey, P.; Gauger, L.; Richard, I. H.; Bull, M. T.; Mejia, N. I.; Bwala, G.; Nance, M.; Shih, L.; Anderson, L.; Singer, C.; Zadikoff, C.; Okon, N.; Feigin, A.; Ayan, J.; Vaughan, C.; Pahwa, R.; Cooper, J.; Webb, S.; Dhall, R.; Hassan, A.; Weis, D.; DeMello, S.; Riggare, S. S.; Wicks, P.; Smith, J.; Keenan, H. T.; Korn, R.; Schwarz, H.; Sharma, S.; Stevenson, E. A.; Zhu, W. National Randomized Controlled Trial of Virtual House Calls for People with Parkinson’s Disease: Interest and Barriers. Telemedicine journal and e-health : the official journal of the American Telemedicine Association 2016, 590–598. https://doi.org/10.1089/tmj.2015.0191.

2015

  • Serrano, J. A.; Larsen, F.; Isaacs, T.; Matthews, H.; Duffen, J.; Riggare, S.; Capitanio, F.; Ferreira, J. J.; Domingos, J.; Maetzler, W.; Graessner, H. Participatory Design in Parkinson’s Research with Focus on the Symptomatic Domains to Be Measured. Journal of Parkinson’s Disease 2015, 5 (1), 187–196. https://doi.org/10.3233/JPD-140472.
  • Achey, M. A.; Beck, C. A.; Beran, D. B.; Boyd, C. M.; Schmidt, P. N.; Willis, A. W.; Riggare, S. S.; Simone, R. B.; Biglan, K. M.; Dorsey, E. R.; Aldred, J.; Ayan, J.; Bull, M. T.; Carter, J.; Duderstadt, K.; Dunlop, B.; Galifianakis, N. B.; Hickey, P.; Hunter, C. B.; Jimenez-Shahed, J.; Keenan, H. T.; Korn, R. E.; Mari, Z.; Meijia, N. I.; Morgan, J. C.; Nance, M. A.; Parashos, S. A.; Richard, I. H.; Shih, L. C.; Spindler, M. A.; Wielinski, C.; Zadikoff, C. A Randomized Controlled Trial of Telemedicine for Parkinson’s Disease (Connect.Parkinson) in the United States: Interim Assessment of Investigator and Participant Experiences. In 19th International of Parkinson’s Disease and Movement Disorders in Congress; 2015; Vol. 30, p S64.

2014

  • Achey, M. A.; Beck, C. A.; Beran, D. B.; Boyd, C. M.; Schmidt, P. N.; Willis, A. W.; Riggare, S. S.; Simone, R. B.; Biglan, K. M.; Dorsey, E. R. Virtual House Calls for Parkinson Disease (Connect.Parkinson ): Study Protocol for a Randomized, Controlled Trial. Trials 2014, 15 (456).

2012

  • Cohen, P. D.; Isaacs, T.; Willocks, P.; Herman, L.; Stamford, J.; Riggare, S.; Wittekind, P. Sham Neurosurgical Procedures: The Patients’ Perspective. Lancet neurology 2012, 11 (12), 1022. https://doi.org/10.1016/S1474-4422(12)70277-6.