Publications by Patvocates Team Members

The Patvocates team members are long-standing experts in patient engagement, patient advocacy and patient-led research, fields that are important for advancing healthcare and empowering the patient community. Their contributions to these publications underscore our unwavering commitment to improving patient outcomes by championing evidence, frameworks, tools and key initiatives in the area of patient engagement and patient-centric healthcare and bringing their knowledge into the public domain.

Below is a curated selection of their publications, organised by year, highlighting the breadth and depth of their impact on the field.

2024

Patient authorship of medical research publications: An evolution, revolution, and solution? Woolley K, Stones S, Stephens R, Bharadia T, Yamamoto B, Geissler J, Yang B, Oliver J, Boughey A, Elliott C, Dormer L, Walker J, Lobban D, in: Learned Publishing (2024). doi: 10.1002/leap.1607
Physical exercise recommendations for patients with chronic myeloid leukemia based on individual preferences identified in a large international patient survey study of the East German Study Group for Hematology and Oncology (OSHO #97). Hollenbach L, Rogahn J, le Coutre P, Schulze S, Muegge LO, Geissler J, Gruen J, Junghanss C, Felser S in: Front. Oncol., 21 February 2024, Volume 14 – 2024. doi: 10.3389/fonc.2024.1345050
Patients’ knowledge, preferences, and perspectives about data protection and data control: an exploratory survey. Lalova-Spinks T, Saesen, Silva M, Geissler J, ShakhnenkoIryna I, Camaradou JC, Huys I in: Frontiers in Pharmacology, 20 February 2024, Volume 14 – 2023. doi: 10.3389/fphar.2023.1280173
Decreased physical activity and prolonged sitting time are associated with liver steatosis in people with HIV, Riebensahm C, Berzigotti A, Surial B, Haerry D, Günthard H F, Tarr Ph E, Furrer HJ, Rauch A, Wandeler G, Swiss HIV Cohort Study SHCS: JAIDS Journal of Acquired Immune Deficiency Syndromes 95(2): p 179-184, February 1, 2024; doi: 10.1097/QAI.0000000000003328
Humanes Papillomavirus Impfung: Update 2023: Kiener L, Schwendener C, Wingeier B, Gallmann C, Etter G, Huber B, Bertisch B, Aebi-Popp K, Haerry D, Kind A, Frey Tirri B, Broglie M, Tarr Ph: Prim Hosp Care Allg Inn Med. 2024;24(02):37-42; doi: 10.4414/phc-d.2024.1335630678
Humanes Papillomavirus: Update zu Erkrankungen und Prävention: Kiener L, Schwendener C, Wingeier B, Gallmann C, Etter G, Huber B, Bertisch B, Aebi-Popp K, Haerry D, Kind A, Frey Tirri B, Broglie M, Tarr Ph: Prim Hosp Care Allg Inn Med. 2024;24(01):14-18; doi: 10.4414/phc-d.2024.1324160658
Patientenbeteiligung im CML-Studiennetzwerk. Hochhaus A, Geissler J. Onkologie. 2024. doi:10.1007/s00761-024-01598-9.
Embedding patient engagement in the R&D process of a life sciences company through co-creation with a patient expert R&D board: a case study. Jobson E, Garcia M, Sharek D, Risueño L, Arnould S, Lemoine-André A, Geissler J, Amariutei A, Grigolo S, Nafria Escalera B, Smith T, Sousa O, Stone L, West J. Res Involv Engagem. 2024;10:116. doi:10.1186/s40900-024-00631-w

2023

Delivering Digital Health Solutions that Patients Need: A Call to Action. Veronica Popa, Jan Geissler, Rebecca Vermeulen, Elizabeth Priest, Katherine Capperella, Gözde Susuzlu, Sharon F. Terry, Nicholas Brooke in: Therapeutic Innovation & Regulatory Science, published: 11 December 2023 (2023). doi: 10.1007/s43441-023-00592-4
Precision oncology medicines and the need for real world evidence acceptance in health technology assessment: Importance of patient involvement in sustainable healthcare. Jan Geissler, Lydia E. Makaroff, Bärbel Söhlke, Carsten Bokemeyer in: European Journal of Cancer, Volume 193, November 2023, 113323. doi: 10.1016/j.ejca.2023.113323
A New Framework for Co-Creating Telehealth for Cancer Care with the Patient Community. Bonnie Addario; Violeta Astratinei; Louise Binder; Jan Geissler; Marcia K. Horn; Linda U. Krebs; Bryan Lewis; Kathy Oliver; Andrew Spiegel in: The Patient – Patient-Centered Outcomes Research for 2023-09. doi: 1007/s40271-023-00642-x
Vom Patienten zum Akteur in der Nationalen Dekade gegen Krebs. Jan Geissler, Stefan Huber in: Forum, Springer Medizin Verlag GmbH (2023). doi: 10.1007/s12312-023-01227-3
Adopting recommendations for implementing patient involvement in cancer research: a funder’s approach. Costa Alencar, A.B., Selig, W.K.D., Geissler, J. et al. . in: Res Involv Engagem (2023). doi: 10.1186/s40900-023-00410-z
Understanding quality of life in patients with acute leukemia, a global survey. Pemberton-Whiteley, Nier, Geissler, Wintrich, Verhoeven, Christensen, Salek, Oliva, Ionova, Bradley, in: Patient Cent Res Rev. 2023;10:21-30. doi: 10.17294/2330-0698.1951
Long-Term Trends in Hepatitis C Prevalence, Treatment Uptake, and Liver-Related Events in the Swiss HIV Cohort Study: Baumann L, Braun D L, Cavassini M, Stoeckle M, Bernasconi E, Schmid P, Calmy A, Haerry D, Béguelin Ch, Fux Ch A, Wandeler G, Surial B, Rauch A: , 2023; Liver International, 18 Oct 2023; doi: 10.1111/liv.15754
Triggers of change in sexual behavior among people with HIV: The Swiss U=U statement and Covid-19 compared: Hamusonde K, Salazar Vizcaya L P, Bernasconi E, Calmy A, Darling K, Günthard H, Haerry D, Kouyos R, Nicca D, Schmid P, Stoeckle M, Rauch A: J Infect Dis 2023 Feb 1;227 (3):407-411. doi: 10.1093/infdis/jiac459
Adopting recommendations for implementing patient involvement in cancer research: A funder’s approach. Behan V, Costa Alencar A, Selig W, Geissler J, Bereczky T, Ubide A, Haerry D, Stephens R; Res Involv Engagem. 2023 Mar 1;9(1):6. doi: 10.1186/s40900-023-00410-z
An exploration of the implementation of peer work across multiple fields in Ireland. Mahon D, Sharek D. Ment Health Soc Incl. 2023. doi:10.1108/MHSI-12-2022-0082.
Irish transgender voices on mental health and mental health care. De Vries J, Downes C, Sharek D, Doyle L, Murphy R, Begley T, McCann E, Sheerin F, Smyth S, Higgins A. Ment Health Soc Incl. 2023. doi:10.1108/MHSI-12-2022-0085.

2022

Veränderungen durch die neue EU-Verordnung 536/2014 zu klinischen Prüfungen aus Patientensicht. Klingmann, Paul, Bereczky, Plate, Breithaupt-Grögler, Schindler, Geissler, in: Bundesgesundheitsbl (14 Dec 2022), DOI: 10.1007/s00103-022-03635-7
Pan-Stakeholder Core Outcome Set (COS) Definition for Hematological Malignancies within the Framework of Harmony and Harmony PLUS Projects. Lang, Bereczky, Geissler et al, in: Blood (2022) 140 (Supplement 1): 5285–5287, DOI: 10.1182/blood-2022-157549
European Groundshot—addressing Europe’s cancer research challenges: a Lancet Oncology Commission. Lawler, Davies, Oberst, Oliver (…) Geissler et al, in: Lancet Oncology Commission (2022), DOI: 10.1016/S1470-2045(22)00540-X
An Approach to Solving the Complex Clinicogenomic Data Landscape in Precision Oncology: Learnings From the Design of WAYFIND-R, a Global Precision Oncology Registry. Le Tourneau, Perret, Hackshaw, Blay, Nabholz, Geissler, Do, von Meyenn, Dienstmann, in: JCO Precis Oncol (2022), DOI: 10.1200/PO.22.00019
Patientenbedürfnisse müssen eine zentrale Rolle spielen. Interview mit Prof. Diana Lüftner und Jan Geissler über die Bedürfnisse der Patienten, deren Einbeziehung in wissenschaftliche Projekte, Fortschritte in der Digitalisierung und die Bedeutung von Informationen, in: FAZ Zukunft Gesundheitswesen, 16 Jun 2022
Building a HARMONY Added Value Framework for Hematologic Malignancies: A Comparative Analysis of Existing Tools. Cerisoli, Ali, Bereczky, Bolaños, Bullinger, Dhanasiri, Gallagher, García Pérez, Geissler, Guillevic, Harrison, Naoum, Portulano, Rodríguez, Schulze-Rath, Gómez Sanz, Hernández Rivas, in: Value in Health (2022), DOI: 10.1016/j.jval.2022.04.1729
Reaching beyond maximum grade: progress and future directions for modernising the assessment and reporting of adverse events in haematological malignancies. Thanarajasingam, Minasian, Bhatnagar, Cavalli, Angelo De Claro, Dueck, El-Galaly, Neil Everest, Geissler, Gisselbrecht, Gormley, Gribben, Horowitz, Ivy, Jacobson, Keating, Kluetz, Kwong, Little, Matasar, Mateos, McCullough, Miller, Mohty, Moreau, Morton, Nagai, Nar, Nastoupil, Robertson, Sidana, Smdby, Soneveld, Tzogani, von Leeuwe, Velikova, Vlla, Wingard, Seymour, Habermann, in: Lancet Hematology (2022), DOI: 10.1016/S2352-3026(22)00045-X
Improving outcomes through patient-generated evidence – the next step in patient advocacy. Geissler, Huber (2022), in: The Lancet Haematology, doi 10.1016/S2352-3026(22)00131-4
Delivering precision oncology to patients with cancer. Mateo, Steuten, Aftimos, André, Davies, Garralda, Geissler, Husereau, Martinez-Lopez, Normanno, S. Reis-Filho, Stefani, Thomas, Westphalen, Voest, in: Nature Medicine volume 28, pages 658–665 (2022), DOI: 10.1038/s41591-022-01717-2
Das Potenzial digitaler Entscheidungshilfen und großer Datensätze für Patienten und Forschung. Geissler, Huber, in: Nationale Arena für digitale Medizin – Wandel. Werte. Wege. Leyck Dieken (Hrsg.), Medizinisch Wissenschaftliche Verlagsgesellschaft (2022), ISBN: 978-3-95466-667-6
Sexuell übertragbare Infektionen: Epidemiologie und Management: Schoepf I C, Hunziker M, Surber J, Bertisch B, Hampel B, Meynard A, Brenner Cortazar M, Kulier R, Egli R, Grandinetti T, Etter G, Dietrich L, H, Capol S, Aebi Popp K, Müller S, J. Schmidt, A, Tarr Ph, co-author (David U. Haerry); Prim Hosp Care Allg Inn Med. 2022;22(10); doi: 10.4414/phc-d.2022.10556
Affenpocken: Simon NR, Schöpf IC, Haerry D, Deml MJ, Müller S, Aebi-Popp K, Egli R, Kulier R, Meynard A, Schmidt AJ, Rowedder A, Béguelin C, Falch B, Etter G, Bertisch B, Braun DL, Nemeth J, Calmy A, Tarr P; Prim Hosp Care Allg Inn Med. 2022;22(10); doi: 10.4414/phc-d.2022.10529
Prevalence, risk factors, and interventions for obesity in Saudi Arabia: A systematic review. Salem V, AlHusseini N, Abdul Razack HI, Naoum A, Sims OT, Alqahtani SA. Obes Rev. 2022;23(7). doi:10.1111/obr.13448.
“These are people just like us who can work“: Overcoming clinical resistance and shifting views in the implementation of individual placement and support (IPS). Sharek D, Lally N, Brennen C, Higgins A. Adm Policy Ment Health. 2022;49(5):848-860. doi:10.1007/s10488-022-01204-3.
Training programmes for practitioners in sexual health promotion: An integrative literature review of evaluations. Begley T, Daly L, Downes C, De Vries J, Sharek D, Higgins A. Sex Educ. 2022;22(1):84-109. doi:10.1080/14681811.2021.1887845.

2021

Principles of Successful Patient Engagement in Cancer Research. Authored by the German Federal Ministry of Education and Research in the framework of the Trio Presidency of the European Council (Germany, Portugal and Slovenia) with over 130 contributors from 16 countries across Europe. Published in in September 2021
“It’s easier when you know how…” A publications training course co-created by patient advocates and publication professionals. Woolley, Geissler, Bereczky, Bougheye, Pemberton-Whiteley Gegenyg, Lobban, in: Curr Med Res Opin 2021;27(Suppl 1):14., doi: 10.6084/m9.figshare.16768882.v1
The European Code of Cancer Practice. Lawler, Oliver, Gijssels, Aapro, Abolina, Albreht, Erdem, Geissler, Jassem, Karjalain, Vecchia, Lievensk, Meunier, Morrissey, Naredim, Oberst, Poortmanso, Price, Selby et al, in: Journal of Cancer Policy (2021), doi: 10.1016/j.jcpo.2021.100282
Recommendations on patient involvement for funding institutions. Geissler, Haerry, Bereczky, Alencar. Rising Tide Foundation and Patvocates (2021)
Recommendations on patient involvement for applicants of collaborative research grants. Geissler, Haerry, Bereczky, Alencar. Rising Tide Foundation and Patvocates (2021)
Recommendations for patient organizations and patient advocates on participation in collaborative research projects. Geissler, Haerry, Bereczky, Alencar. Rising Tide Foundation and Patvocates (2021)
Gesundheitskompetenz und Patientenpartizipation in Deutschland und der EU. Geissler, Huber, in: Patienten und Fachgesellschaften: Zusätzliche Expertise fürs AMNOG. Interdisziplinäre Plattform zur Nutzenbewertung, Ausgabe 13 (Sept 2021), ISBN 2364-916X.
Patientenbeteiligung als Investment für eine effizientere Forschung und Entwicklung neuer Arzneimittel. Geissler, Huber, in: PM QM 3/2021 by DGPharMed and German Quality Management Association e.V.
Gemeinsam Forschen gegen Krebs. Geissler, in: Zukunft der Krebsmedizin 2021, Frankfurter Allgemeine Zeitung (23. Juni 2021).
Patient Preferences for Multiple Myeloma Treatments: A Multinational Qualitative Study.
Janssens R, Lang T, Vallejo A, Galinsky J, Plate A, Morgan K, Cabezudo E, Silvennoinen R, Coriu D, Badelita S, Irimia R, Anttonen M, Manninen RL, Schoefs E, Vandebroek M, Vanhellemont A, Delforge M, Stevens H, Simoens S, Huys I.
in: Front Med (Lausanne). 2021 Jul 6;8:686165. doi: 10.3389/fmed.2021.686165, PMID: 34295912
The Role of EUPATI CH in Promoting Patient Involvement in Clinical Research: A Multi-Stakeholder Research Project: Sessa C, Schmid C, Tolotti A, Magnin A, Haerry D, Bonetti L and Klingmann I (2021). Front. Med. 8:795659, Dec 2021 doi: 10.3389/fmed.2021.795659.
Participation, retention and uptake in a multicentre pre-exposure prophylaxis cohort using online, smartphone-compatible data collection: F Hovaguimian, E Martin, M Reinacher, M Rasi, AJ Schmidt, E Bernasconi, E Boffi El Amari, DL Braun, A Calmy, K Darling, V Christinet, C Depmeier, C Hauser, S Läuchli, J Notter, M Stoeckle, B Surial, P Vernazza, P Bruggmann, P Tarr, D Haerry, R Bize, N Low, A Lehner, J Böni, RD Kouyos, JS Fehr, B Hampel: HIV Medicine, Vol 23, Issue 2, Oct 2021, doi: 10.1111/hiv.13175
Recommendations on Screening Strategies for Cervical Cancer: HPV testing compared to cytology: Zwahlen M, Agoritsas Th, Aebi St, Auer R, Guetg R, Fracheboud J, Schwenkglenks M, Hurst-Majno S, Salathé M, Haerry D: ; Cancer Screening Committee, Krebsliga Schweiz, August 2021
Bassetti C. L. A., Bochud M, Calandra Th, Frey U, Frisoni G B, Geissbühler A, Haerry D H U, Hurst S, Knuesel I, Naef R, Pauli-Magnus Ch, Scheidegger D, Selby K, Selter L, Tapernoux M, Vermij S, von Moos R, Windecker St, Wollscheid B: White Paper: Clinical Research, Swiss Academies Communications, Vol 16, No 3, 2021
Der Anfang vom Ende der HIV/Aids-Pandemie – HIV-Prä-Expositions-Prophylaxe (PrEP) in der Schweiz: Weber M, Bernasconi E, Bize R, Boffi E, Böhni J, Braun D, Calmy A, Cavassini M, Christinet V, Depmeier C, Fehr J, Haerry D, Hauser Ch, Kouyos R, Lachmann F, Läuchli, Lehner A, Low N, Nicca D, Rasi M, Reinacher M, Schmidt AJ, Stoeckle M, Vernazza P, Hampel B: Swiss Medical Forum 2021, accepted manuscript
Neues aus der HIV-Diagnostik: Hampel B, Bernasconi E, Boffi E, Böni J, Borso D, Calmy A, Cavassini M, Fehr J, Furrer Hj, Haerry D, Herold M., Kahlert Ch, Scheidegger C, Schmid P, Stoeckle M, Tarr Ph, Toutous Trellu L, Vernazza P: Swiss Medical Forum 2021; 21(0304) doi: 10.4414/smf.2021.08707
An exploration of mental distress in transgender people in Ireland with reference to minority stress and dissonance theory. De Vries J, Downes C, Murphy R, Sheerin F, Doyle L, Begley T, McCann E, Smyth S, Sharek D, Higgins A. Int J Transgender Health. 2021:1-18. doi:10.1080/26895269.2022.2105772.
The design and development of an online education program for families of trans young people. Sharek D, McCann E, Huntley-Moore S. J LGBT Youth. 2021;18(2):188-210. doi:10.1080/19361653.2020.1712296
Capacity building in sexual health promotion: A longitudinal evaluation of a training-the-trainer programme in Ireland. Higgins A, Downes C, Daly L, Begley T, Sharek D, De Vries J. Sex Relatsh Ther. 2021;36(1):46-67. doi:10.1080/14681994.2019.1566604.

2020

Investigating the Quality of Life of Patients with Acute Leukemia, with a Focus on Age and Patient-Reported Experience. Pemberton-Whiteley, Bier, Geissler, Wintrich, Verhoeven, Christensen et al, in: Blood (2020) 136 (Supplement 1), doi: 10.1182/blood-2020-141293
Cross-Border Access to Clinical Trials in the EU: Exploratory Study on Needs and Reality. Lalova, Padeanu, Negrouk, Lacombe, Geissler, Klingmann, Huys, in: Frontiers in Medicine (2020), doi: 10.3389/fmed.2020.585722
Treatment-free remission in chronic myeloid leukemia: the patient perspective and areas of unmet needs. Sharf, Marin, Bradley, Pemberton-Whiteley, Bombaci, Christensen, Gouimi, Deekes, Daban, Geissler, in: Leukemia (2020), doi: 10.1038/s41375-020-0867-0
Core outcome set measurement for future clinical trials in acute myeloid leukemia: the HARMONY study protocol using a multi-stakeholder consensus-based Delphi process and a final consensus meeting. Lang, Harrison, Williamson, Ossekoppele, Geissler, Berezczky et al, in: Trials (2020), doi: 10.1186/s13063-020-04384-1
Including the patient voice in the development and implementation of patient-reported outcomes in cancer clinical trials. Addario B, Geissler J, Horn MK, Krebs LU, Maskens D, Oliver K, Plate A, Schwartz E, Willmarth N.
in: Health Expect. 2020 Feb;23(1):41-51. doi: 10.1111/hex.12997. PMID: 31722131
Integrating public health programs and research after the malaria vaccine implementation program (MVIP): Recommendations for next steps, van der Graaf R, Macklin R, Rid A, Bhan A, Gefenas E, Greco D, Haerry D, Hurst S, London A J, Saracci R, Sprumont D, van Delden JM, Vaccine October 2020, doi: 10.1016/j.vaccine.2020.08.077
HIV Post-Expositionsprophylaxe (PEP) und Prä-Expositionsprophylaxe (PREP): Schoepf I, Haerry D, Tarr Ph: , Pharma Kritik 2020, accepted
WHO’s malaria vaccine study represents a “serious breach of international ethical standards: van der Graaf R, Macklin R, Rid A, Bhan A, Gefenas E, Greco D, Haerry D, Hurst S, London A J, Saracci R, Sprumont D, van Delden JM, BMJ 2020;368:m734, doi: 10.1136/bmj.m734
LGBT+ young people’s perceptions of barriers to accessing mental health services in Ireland. Higgins A, Downes C, Murphy RA, Sharek D, Begley T, McCann E, Sheerin F, Smyth S, De Vries J, Doyle L. J Nurs Manag. 2020;29(1):56-67. doi:10.1111/jonm.13186.

2019

Including the patient voice in the development and implementation of patient-reported outcomes in cancer clinical trials. Addario, Geissler, Horn, Krebs, Maskens, Oliver, Plate, Schwartz, Willmarth, in: Health Expectations (2019), doi: 10.1111/hex.12997
CML Patients’ Views on Psychological Support throughout the Treatment-Free Remission Journey. Sharf, Hochhaus, Geissler, Marin, Pemberton-Whiteley, Bombaci, Christensen, Gouimi, Daban, Deekes, Bradley, in: Blood (2019) 134 (Supplement_1): 2934, doi: 10.1182/blood-2019-123942
Identifying Differences in the Quality of Life of Patients with Acute Leukemia: A Global Survey. Pemberton-Whiteley, Oliva, Geissler et al, in: Blood (2019) 134 (Supplement_1): 4785, doi: 10.1182/blood-2019-128818
Randomized, Open-Label, Multicenter, Phase 2 Study of Asciminib (ABL001) As an Add-on to Imatinib Versus Continued Imatinib Versus Switch to Nilotinib in Patients with Chronic Myeloid Leukemia in Chronic Phase Who Have Not Achieved a Deep Molecular Response with Frontline Imatinib. Saglio, Hughes, Geissler, Kapoor, Longin, Mukherjee, Cortes, in: Blood (2019) 134 (Supplement_1): 5910, doi: 10.1182/blood-2019-124702

2018

Beyond maximum grade: modernising the assessment and reporting of adverse events in haematological malignancies. Thanarajasingam, Minasian, Baron, Cavalli, De Claro, Dueck, El-Galaly, Everest, Geissler et al, in: Lancet Haematology (2018), doi: 10.1016/S2352-3026(18)30051-6
What do stakeholders expect from patient engagement: Are these expectations being met? Boudes, Robinson, Bertelsen, Brooke, Hoos, Boutin, Geissler, Sargeant, in: Health Expectations (2018), doi: 10.1111/hex.12797
Role of Patient Organisations. Bedlington, Geissler, Houyez, Lightbourne, Maskens, Strammiello, in: Patient Involvement in Health Technology Assessment. Facey, Ploug Hansen, Single (Ed.) (2017), doi: 10.1007/978-981-10-4068-9
Asciminib (ABL001) in Combination with Imatinib in Patients with Chronic Myeloid Leukemia in Chronic Phase Who Have Not Achieved a Deep Molecular Response with Long-Term Frontline Imatinib: A Randomized, Open-Label, Multicenter, Phase 2 Study. Cortes, Hughes, Geissler, Hois et al, in: Clinical Lymphoma, Myeloma and Leukemia (2018), doi: 10.1016/j.clml.2018.07.093
EUPATI Guidance for Patient Involvement in Medicines Research and Development (R&D); Guidance for Pharmaceutical Industry-Led Medicines R&D; Warner K, See W, Haerry D, Klingmann I, Hunter A, and May M. Front. Med. 5:270. doi: 10.3389/fmed.2018.00270
EUPATI and Patients in Medicines Research and Development: Guidance for Patient Involvement in Ethical Review of Clinical Trials: Klingmann I, Heckenberg A, Warner K, Haerry D, Hunter A, May M and See W (2018). Front. Med. 5:251. doi: 10.3389/fmed.2018.00251
EUPATI Guidance for Patient Involvement in Medicines Research and Development: Health Technology Assessment: Hunter A, Facey K, Thomas V, Haerry D, Warner K, Klingmann I, May M and See W (2018). Front. Med. 5:231. doi: 10.3389/fmed.2018.00231
EUPATI and Patients in Medicines Research and Development: Guidance for Patient Involvement in Regulatory Processes: Haerry D, Landgraf C, Warner K, Hunter A, Klingmann I, May M and See W (2018). Front. Med. 5:230. doi: 10.3389/fmed.2018.00230
CardioScape mapping the cardiovascular funding landscape in Europe. Pries AR, Naoum A, Habazettl H, et al. Eur Heart J. 2018;39(25):2423-2430. doi:10.1093/eurheartj/ehx106.
Education needs of families of transgender young people: A narrative review of international literature. Sharek D, Huntley-Moore S, McCann E. Issues Ment Health Nurs. 2018;39(1):59-72. doi:10.1080/01612840.2017.1395500.

2017

Improving Patient Involvement in Medicines Research and Development: A Practical Roadmap. Geissler, Ryll, Leto, Uhlenhopp, Therapeutic Innovation & Regulatory Science (2017), doi: 10.1177/2168479017706405
Factors influencing adherence in CML and ways to improvement: Results of a patient-driven survey of 2546 patients in 63 countries. Geissler, Sharf, Bombaci, Daban, de Jong, Gavin, Pelouchova, Dziwinksi, Hasford, Hoffmann, Journal of Cancer Research and Clinical Oncology (2017), DOI: 10.1007/s00432-017-2372-z
Culture and Process Change as a Priority for Patient Engagement in Medicines Development. Boutin, Dewulf, Hoos, Geissler, Todaro, Schneider et al, in: Ther Innov Regul Sci (2017), doi: 10.1177/2168479016659104.
Living with the burden of relapse in multiple myeloma from the patient and physician perspective.
Hulin C, Hansen T, Heron L, Pughe R, Streetly M, Plate A, Perkins S, Morgan K, Tinel A, Rodrigues F, Ramasamy K. Leuk Res. 2017 Aug;59:75-84. doi: 10.1016/j.leukres.2017.05.019. PMID: 28582636
Patient reporting in the EU: Analysis of EudraVigilance data: David U. Haerry (co-author), Drug Safety Journal, 2017
HIV-Präexpositionsprophylaxe (PrEP): David U. Haerry (co-author), Schweiz Med Forum 2017;17(26–27):579–582

2016

Chronic myeloid leukemia patients call for quality and consistency when generics are introduced to treat their cancer, J Geissler, G Sharf, J Cugurovic, R Padua, Š Narbutas, M Remic, V Venkatesh; Leukemia (2016); doi: 10.1038/leu.2016.220
The European Hematology Association Roadmap for European Hematology Research, a consensus document. Engert, Balduini, Brand, Coiffier et al, in: Hematologica (2016), doi: 10.3324/haematol.2015.136739
The European Cancer Patient’s Bill of Rights, update and implementation 2016, Højgaard, Löwenberg, Selby et al, in: ESMO Open (2016), doi: 10.1136/esmoopen-2016-000127
CIOMS International Ethical Guidelines for Health-related Research involving Humans, David U. Haerry (Member working group); approved by CIOMS Executive Committee Nov 29, 2016
Reasons for not starting antiretroviral therapy in HIV-1 infected individuals: A changing landscape, David U. Haerry (co-author), Infection (2016) 44: 521. doi:10.1007/s15010-016-0887-x
Medical humanities: A closer look at learning. Patterson A, Sharek D, Hennessy M, Phillips M, Schofield S. Med Humanit. 2016;42(2):115-120. doi:10.1136/medhum-2015-010834.
Mental health needs of people who identify as transgender: A review of the literature. McCann E, Sharek D. Arch Psychiatr Nurs. 2016;30(2):280-285. doi:10.1016/j.apnu.2015.07.003.
Impact of perinatal mental health education on student midwives’ knowledge, skills and attitudes: A pre/post evaluation of a module of study. Higgins A, Carroll M, Sharek D. Nurse Educ Today. 2016;36:364-369. doi:10.1016/j.nedt.2015.09.007.

2015

Biobanking from the patient perspective, D Mitchell, J. Geissler, A Parry-Jones, H Keulen, D Schmitt, R Vavassori, B Matharoo-Ball., Research Involvolvement and Engagement (2015) 1: 4. doi: 10.1186/s40900-015-0001-z
Mobile Health Global Interview with Jan Geissler, 29 Sept 2015
EUPATI: Collaborating between patients, academia and industry to champion the informed patient in medicines research and development, Daphnee Pushparajah, Jan Geissler, Niels Westergaard, in: Journal of Medicines Development Science (July 2015), doi: 10.18063/JMDS.2015.01.011
Partnering With Patients in the Development and Lifecycle of Medicines: A Call for Action, Anton Hoos, James Anderson, Marc Boutin, Lode Dewulf, Jan Geissler, Graeme Johnston, Angelika Joos, Marilyn Metcalf, in: Therapeutic Innovation & Regulatory Science (April 2015), DOI: 10.1177/2168479015580384
Training on trials: Patients taught the language of drug development, Shraddha Chakradhar, Nature Medicine (5 March 2015), doi:10.1038/nm0315-209, with Interview of Jan Geissler
Patienten brauchen Sicherheit, aber auch Fortschritt – Die neue EU-Verordnung zu klinischen Arzneimittelprüfungen, Jan Geissler, FORUM 2015, 30:29–32, DOI 10.1007/s12312-015-1266-8, Springer, February 2015
Informed Consent, ESMO (European Society for Medical Oncology). Background, Literature and Recommendations for Writing an Informed Consent Form Thomas Cerny, Jan Geissler, Marie-Christine Hollerith
Syphilis: aktualisierte Empfehlungen zu Diagnostik und Behandlung: David U. Haerry (co-author), Schweiz Med Forum 2015;15(19):459-465
The impact of four family support programmes for people with a disability in Ireland. Daly L, Sharek D, De Vries J, Griffiths C, McBennett P, Sheerin F, Higgins A. J Intellect Disabil. 2015;19(1):34-50. doi:10.1177/1744629514564584.
Towards a full life: An evaluation of family support programmes for people with disability. Higgins A, Sharek D, Sheerin F, Daly L, Griffiths C, De Vries J, McBennett P. Natl Inst Health Sci Res Bull. 2015;7(2):56.

2014

ePatients: Changing healthcare with technology, Interview on Mobile Health Global, 27 November 2014
Patients as partners in medicines development – the EUPATI project, Interview of an Geissler in Pharmaforum blog, 14 Oct 2014
Integrating cancer patients’ perspectives into treatment decisions and treatment evaluation using patient-reported outcomes–a concept paper. Huebner, Rosé, Geissler, Gleiter, Muenstedt, Micke, Buentzel, Bottomley, Hofheinz, in: Eur J Cancer Care (2014), doi: 10.1111/ecc.12095
Molekular zielgerichtete Therapie der chronischen myeloischen Leukämie (CML), Prof. Dr. Tim H. Brümmendorf und Prof. Dr. Steffen Koschmieder (Hrsg.), Jan Geissler (Co-Autor), UNI-MED, 1. Auflage 2014, 140 Seiten, Hardcover, ISBN 978-3-8374-2269-6
A Catalyst for Change: The European Cancer Patient’s Bill of Rights. Lawler, Le Chevalier, Murphy, Banks, …, Geissler et al, in: Oncologist (2014), doi: 10.1634/theoncologist.2013-0452
Der Patient als Partner, Jan Geissler, Jahrbuch Healthcare Marketing 2014 zu “Patient, Verbraucher, Kunden – bestimmen die Nutzer den Gesundheitsmarkt?”
Psychosoziale Aspekte bei der Behandlung der HIV-Infektion: David U Haerry (co-author), Therapeutische Umschau (2014), 71, pp. 509-513, doi: 10.1024/0040-5930/a000545
Postexpositionelle Prophylaxe (PEP) von HIV ausserhalb des Medizinalbereichs – Update der Empfehlungen des BAG, David U. Haerry (co-author), Schweiz Med Forum 2014; 14(8)
Older LGBT people’s experiences and concerns with healthcare professionals and services in Ireland. Sharek D, McCann E, Sheerin F, Glacken M, Higgins A. Int J Older People Nurs. 2014;10(3):230-240. doi:10.1111/opn.12078.
Survey of lesbian, gay, bisexual and transgender people’s experiences of mental health services in Ireland. McCann E, Sharek D. Int J Ment Health Nurs. 2014;23(2):118-127. doi:10.1111/inm.12018.
Challenges to and opportunities for improving mental health services for LGBT people in Ireland: A narrative account. McCann E, Sharek D. Int J Ment Health Nurs. 2014;23(6):525-533. doi:10.1111/inm.12081.
Sexual health promotion programme: Participants’ perspectives on capacity building. Keogh B, Daly L, Higgins A, De Vries J, McCann E, Sharek D. Health Educ J. 2014. doi:10.1177/0017896914563320.

2013

Survey on the worldwide CML Advocates Network regarding complementary and alternative medicine, Journal of Cancer Research and Clinical Oncology, T Elsner, J Geissler, J Huebner, J Cancer Res Clin Oncol, March 2013, doi: 10.1007/s00432-013-1414-4
Factors Predicting Intentional Non-Adherence In Chronic Myeloid Leukemia: A Multivariate Analysis On 2546 Patients By The CML Advocates Network. Geissler, Efficace, Bombaci, de Jong, Gavin, Dziwiński, Daban, Pelouchová, Cottone, Guilhot, Sharf, in: Blood (2013), doi: 10.1182/blood.V122.21.4023.4023
Quality of Life in hematology: European Hematology Association theme of the year … and years to come. Chomienne, Guenova, Hagenbeek, Lacombe, McCann, Salek, Geissler, van der Beek, in: Haematologica (2013), doi: 10.3324/haematol.2012.080796.
Psychiatric nurses’ attitudes towards children visiting their parents in psychiatric inpatient units. Houlihan D, Sharek D, Higgins A. Ir J Psychol Med. 2013;30(4):261-269. doi:10.1017/ipm.2013.50.
Barriers and facilitators for oncology nurses discussing sexual issues with men diagnosed with testicular cancer. Moore A, Higgins A, Sharek D. Eur J Oncol Nurs. 2013;17(4):416-422. doi:10.1016/j.ejon.2012.11.008.
Supporting children whose parent has a mental health problem: An assessment of the education, knowledge, confidence and practices of registered psychiatric nurses in Ireland. Houlihan D, Sharek D, Higgins A. J Psychiatr Ment Health Nurs. 2013;20(4):287-295. doi:10.1111/j.1365-2850.2012.01923.x.

2012

Adherence in Chronic Myeloid Leukemia: Results of a Patient-driven Pilot Survey, Jan Geissler, Giora Sharf. in: Journal For Patient Compliance, Vol 2 Issue 4 (2012)
Psycho-oncology and Advocacy in Cancer Care: An International Perspective, Luzia Travado, Jan Geissler, Kim Thiboldeaux, Jeff Dunn, Ranjit Kaur, and Anne Merriman. in: Clinical Psycho-Oncology: An International Perspective, Luigi Grassi, Michelle Riba, Wiley (2012), DOI: 10.1002/9781119941101
Lesbian, gay, bisexual and transgender older people in Ireland: Mental health issues. McCann E, Sharek D, Higgins A, Sheerin F, Glacken M. Aging Ment Health. 2012;17(3):358-365. doi:10.1080/13607863.2012.751583.
Visible Lives: Experiences of older Lesbian, Gay, Bisexual and Transgender (LGBT) people of Irish healthcare service. Higgins A, Sharek D, McCann E, Sheerin F, Glacken M, Breen M, McCarron M. Natl Inst Health Sci Res Bull. 2012;6(4):52.
Mixed methods evaluation of an interdisciplinary sexuality education programme for staff working with people who have an acquired physical disability. Higgins A, Sharek D, Nolan M, Sheerin B, Flanagan P, Slaicuinaite S, McDonnell S, Walsh H. J Adv Nurs. 2012;68(11):2559-2569. doi:10.1111/j.1365-2648.2012.05959.x.

2011

Delivering affordable cancer care in high-income countries. Sullivan, Pepperkorn, Sikora, … Geissler et al, in: The Lancet Oncology Commission (2011), doi: 10.1016/S1470-2045(11)70141-3
Meet e-patient Jan Geissler – Whydot Blog Interview, 1 August 2011
Survivorship: more than just being (a) patient (European Oncology Nursing Society Newsletter, Summer 2011 edition, pp. 25-27)

2010

Information to Patients Debate 2010 – as if the Internet was still a walled garden, Rare Disease Blogs April 2010, J. Geissler
The Burden of Rare Cancers in Europe – Gatta G et al, J. Geissler (co-author) in: Advances in Experimental Medicine and Biology (2010), doi: 10.1007/978-90-481-9485-8_17
Informierte Einwilligung in klinischen Studien (Informed Consent in Clinical Trials (German), J. Geissler, German Cancer Society’s FORUM magazine 3/2010
We, the patients featuring J. Geissler– CancerWorld Magazine, January 2010 (PDF)

2009

Returned to Risk, Deportation of HIV-positive Migrants David U. Haerry (co-author), Human Rights Watch, 2009

2008

Assessing and supporting patients’ readiness to start cART. Facilitate decision making and starting cART for patients who qualify according to international guidelines. David U. Haerry (co-author), NEAT 2008 (EACS Treatment Guidelines since 2011)

2005

Proceedings of the International Conference Monte Verità Tailoring Health Messages
Marie-Christine Eckle, Ilona Funke, Karl-Walter Jauch, Thomas Knieper, Barbara Mayer (2005):
Key Role of Family and Friends in Communicating Cancer Information

2004

Compulsory HIV testing from a public health and human rights perspective A summary of key arguments to support a wider discussion. Published: PWHA-Net, David U. Haerry (co-author), April 2004

1998

Travel & residency restrictions for people with HIV/AIDS Ongoing global survey, Online: http://www.hivtravel.org/ David U. Haerry (co-author), since 1998