References
- Brook RH. Health Services Research: Is it good for you and me? Acad Med 1989;64(3):124-30
- Eddy DM, Billings J. The quality of medical evidence: implications for quality of care. Health Aff 1988;7(1):19-32
- Tunis SR, Stryer DB, Clancy CM. Practical clinical trials: increasing the value of clinical research for decision making in clinical and health policy. JAMA 2003;12(290):1624-32
- IOM (Institute of Medicine). Initial national priorities for comparative effectiveness research. The National Academies Press; Washington DC, USA: 2009
- National Health Council. Letter to the Honoroable Henry A. Waxman. US House of Representatives, Washington DC, USA; 2009 July 30. Available from: www.nationalhealthcouncil.org/NHC_Files/Pdf_Files/CERproposal_07-31-09.pdf [Last accessed 18 November 2013]
- Tunis SR. A clinical research strategy to support shared decision making. Health Aff 2005;24(1):180-4
- Viswanathan M, Ammerman A, Eng E, et al. Community-based participatory research: assessing the evidence. summary, evidence report/technology assessment: number 99. Agency for Healthcare Research and Quality Publication Number 04-E022-1. August 2004.AHRQ, Rockville, MD, USA. Available from: www.ahrq.gov/clinic/epcsums/cbprsum.htm
- Zerhouni E. Medicine. The NIH Roadmap. Science 2003;302:63-72
- O’Haire C, McPheeters M, Nakamoto EK, et al. Methods for Engaging Stakeholders To Identify and Prioritize Future Research Needs. Methods Future Research Needs Report No. 4. (Prepared by the Oregon Evidence-based Practice Center and the Vanderbilt Evidence-based Practice Center under Contract No. 290-2007-10057-I.) AHRQ Publication No. 11-EHC044-EF. Agency for Healthcare Research and Quality, Rockville, MD, USA; 2011. Available from: www.effectivehealthcare.ahrq.gov/reports/final.cfm [Last accessed 10 November 2013]
- Deverka PA, Lavallee DC, Desai PJ, et al. Stakeholder participation in comparative effectiveness research: defining a framework for effective engagement. J Comp Eff Res 2012;1(2):181-94
- Jagosh J, Macaulay AC, Pluye P, et al. Uncovering the benefits of participatory research: implications of a realist review for health research and practice. Milbank Q 2012;90(2):311-46
- Gray FD. The Tuskegee Syphilis Study: An insiders’ account of the shocking medical experiment conducted by government doctors against African American Men. NewSouth Books; Montgomery, Alabama: 2013
- Greely HT, Cho MK. The Henrietta Lacks legacy grows. EMBO Rep 2013;14(10):849-9
- Slutsky JR, Clancy CM. AHRQ’s Effective Health Care Program: why comparative effectiveness research matters. Am J Med Qual 2009;24(1):67-70
- Carman KL, Maurer M, Mallery C, et al. Community forum deliberative methods demonstration: evaluating effectiveness and eliciting public views on use of evidence. Executive Summary. (Prepared by the American Institutes for Research Under Contract No. 290-2010-00005.) AHRQ Publication No. 14-EHC007-1-EF. Agency for Healthcare Research and Quality, Rockville, MD, USA; 2013. Available from: www.effectivehealthcare.ahrq.gov/reports/final.cfm
- Mallery C, Ganachari D, Fernandez J, et al. Innovative methods in stakeholder engagement: an environmental scan. prepared by the American Institutes for Research under contract No. HHSA 290 2010 0005 C. AHRQ Publication NO. 12-EHC097-EF. Agency for Healthcare Research and Quality, Rockville, MD, USA; May 2012. Available from: www.effectivehealthcare.ahrq.gov/index.cfm/tools-and-resources/how-to-get-involved-in-the-effective-health-care-program/
- Mullins CD, Abdulhalim AM, Lavallee DC. Continuous patient engagement in comparative effectiveness research. JAMA 2012;307(15):1587-8
- Fleurence R, Selby JV, Odom-Walker K, et al. How the Patient-Centered Outcomes Research Institute is engaging patients and others in shaping its research agenda. Health Aff 2013;32(2):393-400
- Nass P, Levine S, Yancy C. Methods for involving patients in topic generation for patient-centered comparative effectiveness research: an international perspective. PCORI 2013. Available from: www.pcori.org [Last accessed 13 December 2013]
- National Institute for Health Research. Patient and public involvement plan: purpose, objectives and work (April 2013 to March 2015). July 2013. Available from: www.ccf.nihr.ac.uk/PPI/Documents/PPI%20Plan%20Progress%20Report%2001.pdf [Last accessed 16 January 2013]
- INVOLVE. Available from: www.invo.org.uk [Last accessed 16 January 2013]
- PCORI. PCORI board adopts strategic plan, approves 2014 budget and advisory panel charters, accepts revised methodology release. 2013
- Deverka PA, Lavallee DC, Desai PJ, et al. Facilitating comparative effectiveness research in cancer genomics: evaluating stakeholder perceptions of the engagement process. J Comp Eff Res 2012;1(4):359-70
- Lavallee DC, Williams CJ, Tambor ES, Deverka PA. Stakeholder Engagement in Comparative Effectiveness Research: how will we measure success? J Comp Eff Res 2012;1(5):397-407
- Abelson J, Forest PG, Eyles J. Deliberations about deliberative methods: issues in the design and evaluation of public participation processes. Soc Sci Med 2003;57(2):239-51
- Israel BA, Schulz AJ, Parker EA, Becker AB. Review of community-based research: assessing partnership approaches to improve public health. Annu Rev Public Health 1998;19:173-202
- Collaboration with Community-Based Organizations and Agencies: a Quick Guide for UCSF Researchers. Available from: http://researchtoolkit.org.isomedia.net/media/content/UCSF%20Guide-Collaborating%20with%20Communities.pdf [Last accessed 11 December 2013]
- Tendulkar SA, Chu J, Opp J, et al. A funding initiative for Community-Based Participatory Research: Lessons from the Harvard catalyst seed grants. Prog Community Health Partnersh 2011;5(1):35-44
- Hood NE, Brewer T, Jackson R, Wewers ME. Survey of community engagement in NIH-funded research. Clin Transl Sci 2010;3(1):19-22
- Shah VO, Ghahate DM, Bobelu J, et al. Identifying barriers to healthcare to reduce health disparity in Zuni Indians using focus group conducted by community health workers. Clin Transl Sci 2013. [Epub ahead of print]
- Shaya FT, Chirikov VV, Mullins CD, et al. Social networks help control hypertension. J Clin Hypertens 2013;15(1):34-40
- The Center for Medical Technology Policy. Effectiveness Guidance Documents General Overview. 2012. Available from: http://www.cmtpnet.org/wp-content/uploads/downloads/2012/05/EGD-Overview.pdf [Last accessed 11 December 2013]
- Basch E, Abernethy AP, Mullins CD, et al. Recommendations for incorporating patient-reported outcomes into clinical comparative effectiveness research in adult oncology. JCO 2012;30(34):4249-55
- Christoper S, Watts V, McCormick AK, Young S. Building and maintaining trust in a community-based participatory research partnership. Am J Public Health 2008;98(8):1398-406
- Mullins CD. Integrating patients’ voices in study design elements with a focus on hard-to-reach populations. Available from: www.pcori.org [Last 9 December 2013]
- Uebelacker LA, Marootian BA, Pirraglia PA, et al. Barriers and facilitators of treatment for depression in a latino community: a focus group study. Community Ment Health J 2012;48(1):114-26
- The Office of Minority Health. What is cultural competency. Available from: http://minorityhealth.hhs.gov/templates/browse.aspx?lvl=2&lvlID=11 [Last accessed 10 December 2013]
- Toffler A. The third wave. Bantam books; NY, USA: 1981
- Hesse BW, O’Connell M, Augustson EM, et al. Realizing the promise of Web 2.0: engaging community intelligence. J Health Commun 2011;16(Suppl 1):10-31
- Silow-Carrol S, Smith B. Clinical management apps: creating partnerships between providers and patients. Issue Brief (Commonw Fund) 2013;30:1-10
- Eysenbach G. The law of attrition. J Med Internet Res 2005;7(1):e11
- Swan M. Crowdsourced health research studies: an important emerging complement to clinical trials in the public health research ecosystem. J Med Internet Res 2012;14(2):e46
- PatientsLikeMe. Available from: www.patientslikeme.com [Last accessed 5 December 2013]
- Wicks P, Massagli MP, Frost J, et al. Sharing health data for better outcomes on PatientsLikeMe. J Med Internet Res 2010;12:2
- Wicks P, Keininger DL, Massagli MP, et al. Perceived benefits of sharing health data between people with epilepsy on an online platform. Epilepsy Behav 2012;23(1):16-23
- Cedarbaum JM, Stambler N, Malta E, et al. The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. J Neurol Sci 1999;169(1):13-21
- Wicks P, Massagli MP, Wolf C, Heywood J. Measuring function in advanced ALS: validation of ALSFRS-EX extension items. Eur J Neurol 2009;16(3):353-9
- Abdulla S, Vielhaber S, Körner S, et al. Validation of the German version of the extended ALS functional rating scale as a patient-reported outcome measure. J Neurol 2013;260(9):2242-55
- Brady CB, Trevor KT, Stein TD, et al. The department of veterans affairs biorepository brain bank: a national resource for amyotrophic lateral sclerosis research. Amyotroph Lateral Scler Frontotemporal Degener 2013;14(7-8):591-7
- Wicks P, Little M. The virtuous circle of the quantified self: a human computational approach to improved health outcomes. In: Handbook of human computation. Springer New York; NY, USA: 2013. p. 105-29
- Wicks P, Vaughan TE, Massagli MP, et al. Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm. Nat Biotechnol 2011;29(5):411-14
- Wicks P, Heywood J, Vaughan T. 2012;Waiting for p<0.05. figshare. Available from: http://dx.doi.org/10.6084/m9.figshare.96802
- CERTAIN: Washington State’s Learning Healthcare System. 2010. Available from: http://becertain.ideascale.com [Last accessed 5 December 2013]
- Devine EB, Alfonso-Cristancho R, Devlin A, et al. A model for incorporating patient and stakeholder voices in a learning health care network: Washington State’s Comparative Effectiveness Research Translation Network. J Clin Epidemiol 2013;66(8):S122-9
- PR Newswire. January 31, 2012. Transparency life sciences, LLC launched as World’s first drug development company based on Open Innovation. Available from: www.prnewswire.com/news-releases/transparency-life-sciences-llc-launched-as-worlds-first-drug-development-company-based-on-open-innovation-138386069.html [Last accessed 18 November 2013]
- TweetChat. Internet Media Labs 2013. Available from: http://blog.tweetchat.com/chatting-101-how-to-participate [Last accessed 12 December 12]
- Doctors 2.0 & You. Doctors 2.0 & you them most tweeted two-day healthcare conference in Europe. Available from: www.doctors20.com/2013/12/18/doctors-2-0-tweeted-two-day-healthcare-conference-europe/?utm_source=Press+Release+-+D20+-+EN+-+Most+Tweeted+Conference&utm_campaign=D20PrRelease3%2913&utm_medium=email
- Health IT Rules and Regulations. Available from: www.healthit.gov/policy-researchers-implementers/health-it-legislation-and-regulation [Last accessed 12 December 2013]
- Zickuhr K. Who’s not online and why. Pew Research Center. Available from: http://pewinternet.org/∼/media//Files/Reports/2013/PIP_Offline%20adults_092513_PDF.pdf [Last accessed 18 November 2013]
- Kutz D, Shankar K, Connelly K. Making sense of mobile – and web-based wellness information technology: cross-generational study. J Med Internet Res 2013;15(6):e83
- Heart T, Kalderon E. Older adults: Are they ready to adopt health-related ICT? Int J Med Inform 2013;82(11):e209-31
- Bove R, Secor E, Healy BC. Evaluation of an Online Platform for Multiple Sclerosis Research: patient Description, Validation of Severity Scale, and Exploration of BMI Effects on Disease Course. PLoS One 2013;8(3):e59707
- Cascade E, Marr P, Winslow M, et al. Conducting research on the internet: medical record data integration with patient-reported outcomes. J Med Internet Res 2012;14(5):e137
- Carman KL, Dardess P, Maurer M, et al. Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health Aff 2013;32(2):223-31
- Mental Health Research Network and INVOLVE. Budgeting for involvement: Practical advice on budgeting for actively involving the public in research studies. Mental Health Research Network; London and INVOLVE, Eastleigh: 2013