1. Save the Date December 5! PIPC Forum: Patient Voices, Patient Value – Developing Patient-Centered Solutions, see details below.
2. Sign and Share Petition to Give Patients and People Served by Health Systems a Voice in Healthcare, click here to view and sign the petition.
3. Morning Consult: Value: How It's Defined and Measured Matters in the Health Care Debate, click here to view the article.
4. American Heart Association Journal: Address to the Incoming US President, click here to view the letter.
5. ICER to Review Drug Treatments for Osteoporosis in Upcoming Report, click here to view the press release.
6. The PCORI Blog: Annual Meeting: How PCORI Is Changing the Conversation about Health Research, click here to view the blog post.
7. The PCORI Blog: Big Data versus a Rare Disease, click here to view the blog post.
8. PCORI Board of Governors October Meeting Transcript Now Available, click here to view the transcript.
9. Upcoming Events and Webinars, see details below.
10. Medical Journal Articles, see details below.
11. AHRQ Effective Program Updates, see details below.
As we make the transition to a value-based health care system, the importance of engagement with patients cannot be overstated. Yet we still face a pressing need for concrete actions and steps that can be taken to ensure patient voices are heard amidst the implementation of payment models seeking to achieve “value” in health care. Although the patient-centeredness movement has made significant strides over the last decade with the creation of the Patient-Centered Outcomes Research Institute (PCORI), the Food and Drug Administration’s (FDA) program for Patient-Focused Drug Development, and the Precision Medicine Initiative the patient-centeredness movement is at a crossroads, struggling whether to determine value of health care based on what is cost effective for the average patient or based on achieving outcomes that matter to individual patients and people with disabilities.
The 7th Annual PIPC Forum will highlight the ongoing efforts of organizations representing patients and people with disabilities to ensure all stakeholders are equipped with the tools they need to fully and meaningfully engage with patients and achieve value for the people served by health systems.
Tony Coelho, Chairman, Partnership to Improve Patient Care
Eleanor Perfetto, PhD, National Health Council
Joanne Buzlago, PhD, Cancer Support Community
Rebecca Kirch, JD, National Patient Advocate Foundation
Maureen Japha, JD, Faster Cures
Monday, December 5, 2016
12:00 p.m. – 2:00 p.m.
Reserve Officers Association
5th Floor Minuteman Ballroom
1 Constitution Ave NE, Washington, DC 20002
RSVP directly to firstname.lastname@example.org
2. Sign and Share Petition to Give Patients and People Served by Health Systems a Voice in Healthcare
Sign and share PIPC Chairman Tony Coelho’s recently launched petition calling on health care stakeholders to recognize patients and people served by health system’s movement for greater say in their own health care. “We urge both the media and politicians to take heed of what matters to us… because in the end, we are all patients,” Chairman Coelho writes.
Join the petition to all those who define your health care to say…
- We insist that on engaging patients, caregivers, and people living with incurable diseases or lifelong disabilities in health care decision-making.
- We want to be at the center of health care.
- We want policies to explicitly empower consumers, patients and providers.
- We want to know what decisions about our health are being made by the government.
- We want a health care system that rewards the outcomes that matter to us as patients and participants in this nation’s health system.
- We reject the notion that we should be bundled into one-size-fits-all care models, or valued against one-size-fits-all judgments of cost-effectiveness. Don’t tell us what we’re worth – ask us what we value.
- None of us is average. We are unique individuals with different genetics, characteristics, needs and preferences. Especially in this promising new age of personalized medicine, we are confounded by proposals in vital programs like Medicare that aim to eliminate, rather than empower, choice of treatments.
PIPC encourages every individual to sign and share the petition in order to increase its impact and raise awareness of the important issue. Click here to view and sign the petition.
3. Morning Consult: Value: How It's Defined and Measured Matters in the Health Care Debate
Morning Consult published an opinion from Dan Leonard that highlights the need to get value frameworks “right” before implementing them, warning that implementing them before they are ready could be dangerous for patients. “There is still much that we need to learn before these frameworks ‘are ready for prime time’ or broader use in the United States. Until they are ‘ready’ and reliable tools, they should not be used in assessments that can impact patients’ access,” the author writes. He goes on to outline six issues that value assessment developers should consider before deeming them ready for implementation, including:
- The type of evidence that is used — and how it is used — is a critical underpinning for all assessments.
- Frameworks need to have a deeper involvement of patients and their perspectives.
- One size doesn’t fit all. Frameworks need to have flexibility to include a variety of inputs. Multiple frameworks can be a good thing.
- Frameworks should be transparent; end-users should be able to see the evidence that was used and know how the model was built so that results could be reproduced.
- Cost effectiveness should be considered from both a health care and societal perspective, such as considering indirect benefits, productivity improvements and the burden on caregivers.
- Budget impact has a different meaning than value assessment. If the budget impact is estimated, then it should be considered separately from value determinations.
Click here to view the article.
4. American Heart Association Journal: Address to the Incoming US President
A letter published in the American Heart Association Journal, Circulation, asks President-Elect Trump to focus on a number of patient-centered priorities in efforts to put health at the top of his priority list. Author Nancy Brown emphasizes the fact that the president-to-be must ensure equitable health for all Americans, noting that “one-size-fits-all approach to improving America’s health challenges won’t improve the lives of all Americans, because each community and population faces specific challenges and risk factors.” “Treating these communities with the same, traditional health interventions is akin to giving everyone the same prescription for eyeglasses and expecting 20/20 vision,” she says.
Ms. Brown also expresses that patients should be at the center of scientific research. She notes the Patient Centered Outcomes Research Institute’s (PCORI) recently launched breakthrough collaboration to engage with caregivers, patients, and the general public to ideate on the most important issues hindering scientific progress. “The initiative is a groundbreaking example of putting patients at the center, combining the power of crowdsourcing with the lure of challenge prizes to accelerate identification of critical research needs,” she says. Lastly, Ms. Brown calls on President-Elect Trump to invest in new models for accelerating scientific research and to ease the burden of disease by building a culture of health in the nation’s communities. Click here to view the letter.
5. ICER to Review Drug Treatments for Osteoporosis in Upcoming Report
According to the Institute for Clinical and Economic Review (ICER), the agency plans to develop a report assessing the comparative clinical effectiveness and value of emerging drug therapies for the treatment of osteoporosis to inform a meeting of the California Technology Assessment Forum (CTAF) in June 2017. “While awaiting further discussion with patient groups, clinical experts, and other stakeholders to help develop a formal scope for this review, our preliminary intent is to evaluate the emerging treatments abaloparatide and romosozumab, with potential comparisons to denosumab and teriparatide,” ICER writes. “We do not currently envision including within the scope of this review other drugs or forms of treatment such as exercise, dietary supplements, vitamins or calcium, hormones, selective estrogen receptor modulators, or bisphosphonates.”
Notably, additional information on the preliminary list of treatments to be reviewed will be posted as part of a draft scoping document scheduled to be released for public comment on December 5, 2016. An “Open Input” period has begun, and comments on the topic will be accepted from all interested stakeholders. According to ICER, the Open Input period is intended to allow stakeholders to comment and share key information relevant to the development of ICER’s scope and evidence report. ICER reports that it will contact key patient groups and clinical experts to gain further insights. Click here to view the press release.
6. The PCORI Blog: Annual Meeting: How PCORI Is Changing the Conversation about Health Research
PCORI featured a blog post in anticipation of their Annual Meeting last week, where they discussed the agenda of the meeting. They write, “The theme of this year’s meeting is ‘Changing the Conversation about Health Research.’ We think that aptly sums up what may well be one of PCORI’s most lasting impacts—seeking to make health research more patient-centered and stakeholder-driven. In our case, of course, the focus is on studies that compare different care approaches to show what works best, for whom, based on outcomes that matter to patients. The goal is to help patients and those who care for them make better-informed decisions about the healthcare choices they make daily.” The blog post goes on to emphasize the fact that the purpose of the meeting will also be to bring together patients and researchers as well as involve community building for research done differently. Click here to view the blog post.
7. The PCORI Blog: Big Data versus a Rare Disease
Mother of a daughter living with Phelan-McDermid syndrome blogs about their experiences, especially as it relates to their involvement with PCORNet. She explains that the rare genetic disease is typically caused by a loss of the bottom segment of chromosome 22 and that the syndrome is a cause of autism, intellectual disabilities, and epilepsy. The mother notes that she became active with PCORnet to not only connect with other families, but to help answer questions like “Why are some kids with Phelan-McDemid syndrome different from others with the same condition?” and “How can we improve the lives of our families, particularly through finding treatments and cures?” The mother goes on to share her and her daughter’s experiences being diagnosed through genetic testing and how they accidentally got involved in research. “With so few patients scattered around the world, the likelihood of getting many of them in a clinic for a study is not high. But with a network, the research community can learn a lot more than from studying small groups of children,” she writes. Click here to view the blog post.
8. PCORI Board of Governors October Meeting Transcript Now Available
A transcript of the PCORI Board of Governors’ October Meeting has now been made available. Click here to view the transcript.
9. Upcoming Events and Webinars
Cancer Support Community: Access to Care in Cancer 2016
November 30, 2016, 9:00AM – 12:00pm
Click here for details.
Recommendations of the Second Panel on Cost-Effectiveness in Health and Medicine
December 7, 2016, 9:00AM - 4:30PM
Click here for details.
2017 National Health Policy Conference
January 30 - 31, 2017, Marriott, Marquis, Washington D.C.
Click here for details.
10. Medical Journal Articles
Intratympanic Methylprednisolone Versus Gentamicin in Patients with Unilateral Ménière's Disease: A Randomised, Double-Blind, Comparative Effectiveness Trial, click here to view.
Comparative Effectiveness of Adalimumab and Etanercept for Rheumatoid Arthritis in the Brazilian Public Health System, click here to view.
Association Between Patient-Centered Medical Homes and Adherence to Chronic Disease Medications: A Cohort Study, click here to view.
Interventions to Improve Adherence to Antiretroviral Therapy: A Systematic Review and Network Meta-Analysis, click here to view.
A Systematic Review on Current Status of Health Technology Reassessment: Insights for South Korea, click here to view.
Health Technology Assessment (HTA) Organizations: Dimensions of the Institutional and Political Framework, click here to view.
Clinical Research Informatics for Big Data and Precision Medicine, click here to view.
11. AHRQ Effective Program Updates
Evidence-Based Practice Center (EPC) Reports Related to Medicines on the Medicare and Medicaid Drug Spending Dashboards, click here to view.
Patient Safety in Ambulatory Settings -- Final Report, click here to view.