Press release. The results of a new survey:BENCHMARKING THE PATIENT MOVEMENT, 2018
Embargoed publication date of Part-I report: Wednesday, 29th August 2018, 6am GMTThe 'Benchmarking the Patient Movement 2018' study finds the patient movement of 2018 to have far more impact on society than it did when the first 'Benchmarking' study was carried out in 2012. However, 2018's patient movement remains fragmented, overly competitive, and its component patient groups continue to lack confidence about their role in national healthcare systems. - The views of 1,016 patient groups from 84 countries.
- Drawn from an April 2018-July 2018 survey.
The results of the 2018 'Benchmarking' study is divided into two reports, Part I and Part II. Both parts analyse patient-group capabilities (2018 results are also compared with those of the 2014 and 2012 'Benchmarking' studies). Part I compares the strengths and weaknesses of patient groups from 17 different therapy areas. The 17 therapy areas analysed in Part I of the 2018 'Benchmarking' report: Blood/bleeding disorders (23 respondent patient groups) [a therapy area new for 2018] I Cancer (206) I Carers/Family/Friends* (25) [also new for 2018] I Circulatory and Heart (37)
I Diabetes (49) I Disability* (26) [new for 2018] I Endocrine (26) I Gastrointestinal (26) I HIV/AIDS (33) I Liver/Hepatitis (25) [new for 2018] I Mental health (64) I Neurological (155) I Rare diseases (87) I Renal (17) [new for 2018]
I Respiratory (43) I Rheumatological (56) I and Skin (33) [new for 2018]. *Disability organisations are included in this 2018 'Benchmarking' analysis, since they understand the limitations of healthcare systems—not just from the perspective of people who have a disability, but also from that of people who have a disabling chronic illness. In addition, organisations representing carers/family/friends are featured in the 2018 analysis; these latter stakeholders often form the cornerstone of the long-term management of care.
Part II of the 'Benchmarking 2018' report, which will be published on Thursday, 30th August 2018, compares the strengths and weaknesses of patient groups from 21 countries/regions of the world. Both Parts of the report are available separately, or together.
Why this 'Benchmarking' study? The patient movement's growth, largely commencing in the 1980s, is well-documented and well-known—as are the reasons for that growth: a reaction to both the rationing of healthcare, and to rising rates of chronic disease. Today's patient groups are generally accepted by other healthcare stakeholders as suppliers of unique and valuable information into what life is really like for patients. Patient groups identify unfulfilled patient needs, and highlight gaps in treatment and support. Moreover,
as this 2018 'Benchmarking' study finds, patient groups have also become important suppliers of healthcare services in countries, and in disease areas, where healthcare systems have reached crisis point. Patient groups provide treatment, their own doctors and nurses, hospices—even hospitals (see Tables 1 and 2).
Yet, despite the obvious importance of patient groups, no real mechanism exists to measure the patient movement's impact upon healthcare—besides the rather arbitrary measures of the numbers of patient groups, or patient groups’ own accounts of their successes or failures. In 2012, PatientView set about filling such a void in measurement by developing a benchmarking tool to assess the impact of patient groups in their fields of activity, and their significance in healthcare systems. The 2018 iteration of the 'Benchmarking' study is the third time the exercise has been conducted (the previous studies were completed in 2012 and 2014). The 2018 'Benchmarking' study brings the analysis of patient-group capability completely up to date.
Methodology: How patient groups are benchmarkedWhen PatientView’s tool for benchmarking the patient movement was first developed in 2012, its reliability was checked by three sets of healthcare stakeholders: healthcare professionals; industry representatives; and patient groups themselves. The aim was to verify the validity of the indicators of patient-group capability employed by the tool. The 'Benchmarking' tool defined eight such indicators for measuring patient-group capabilities. Each of the eight indicators are, in turn, composed of subcategories.
Patient groups taking part in a 'Benchmarking' survey are presented with these indicators and subcategories, drafted in the form of 65 questions. Most questions have binary answers ("Yes"/"No").
The 8 indicators for measuring the capability of patient groups
Explanatory footnotes about the 'Benchmarking' process—as it applies to therapy areas: - The 'Benchmarking' process relies on a system of self assessment by respondent patient groups. The findings should, therefore, be taken as a reflection of the views of participating patient groups—rather than as fact. Nonetheless, the percentages
and rankings do measure how patient groups perceive themselves.
- The numbers of respondent patient groups vary significantly across the therapy areas (from just 17 patient groups, to 206). However, because the 'Benchmarking' statistics are derived from a binary methodology, data are robust and valid (although results can only ever be viewpoints of the surveyed patient groups in that particular therapy area).
- The 'Benchmarking' process compares patient groups from each of 17 therapy areas with … (1.) the average score attained across all of the therapy areas;
and (2.) the scores attained by patient groups from the other 16 therapy areas. Note that the overall averages provided relate to the feedback obtained from all of 2018's 1,016 respondent patient groups.
- The result: the strengths and weaknesses of the patient groups of each therapy area can be determined for 2018, as well as trends across the whole patient movement.
- A number of new subcategories were added to the eight indicators for the 2018 survey, to reflect the fact that patients and patient groups are increasingly involved in all aspects of
healthcare, including research, development—and even regulation.
Changing trends, 2012-2018, across the whole patient movement (all therapies and all countries)
Table 3: Average scores (as percentages) for each of the 8 indicators of patient-group cabability: 2018 versus 2014 versus 2012
* The patient groups participating in the 'Benchmarking' study are asked whether they believe that their country's government does not prioritise their therapy area. Results in the lower percentages suggest that a country's government is likely to prioritise the therapy area (and, therefore, that patient groups specialising in the therapy area are more likely to have an impact on health policy). ** The patient groups participating in the 'Benchmarking' study are asked to identify what they perceive to be the biggest hurdles preventing them from fulfilling their mission (and are asked to comment on eight challenges
routinely faced by patient organisations). In principle, patient groups with the greatest capability should have the least concerns over any (or most) of the challenges.
- Business stability. The 2018 results indicate that the patient movement as whole has increased both its stability, and its forms of financing, since 2012. The biggest changes in business stability, 2012-2018, are positive, and can be seen in the increased adoption of mission statements, and a trend towards better governance. More patient groups are, for instance, appointing boards, and publishing annual reports—both indications that the patient groups possess the resources for a corporate structure. A negative business trend discovered
by the 2018 'Benchmarking' survey, however, is that only 46% of patient groups have a fundraising strategy (a new question introduced for the 2018 'Benchmarking' exercise). This represents a definite subject area in which many patient groups can improve.
- Communication (via social media) has, today, become perhaps one of the most-important mechanisms by which patient groups can reach out to, and understand the needs of, the people they represent. While the percentage of patient groups which maintain websites has slightly declined since the first 'Benchmarking' survey of 2012, patient groups have ramped up their activities on Facebook, Twitter, and other
social-media avenues. Significantly, 77% of 2018's 1,016 respondent patient groups state that they have a Facebook account (compared with 60% in 2014, and 50% in 2012).
- Services to patients. Patient groups provide a wide range of services to their patient constituencies (some patient groups more so than others). The vast majority of patient organisations provide two core services—patient information, and peer-to-peer support (and have done so since 2012, and even long before). However, patient advocacy (that is, representation on behalf of patients)—whether to government, or to healthcare providers, or both—has markedly increased since 2012. In 2018, as many as 68% and 63% of patient groups state that they undertake advocacy to these two healthcare stakeholders, respectively (compared with 52% and 49% in 2012, respectively).
- Networking with other healthcare stakeholders. If patient groups wish to be part of the healthcare environment, and to ensure that their perspective is included, they need to network with other healthcare stakeholders. Since 2012 and 2014,
the degree of networking between patient groups and healthcare professionals (academics; scientific bodies; consultants; and general physicians) has grown sharply. Most notably, 65% of the 2018 survey’s 1,016 respondent patient groups state that they network with academics/ scientific bodies (in 2012 and 2014, the respective figures were 56% and 54%). In 2018, for the first time, the 'Benchmarking' survey asked patient groups about their levels of engagement with regulatory bodies—such as the US Food and Drug Administration (FDA), or the European Medicines Agency (EMA). 22% of 2018’s respondent patient groups say that they have such a relationship. Although the figure is low, that is still most likely a marked improvement from previous years.
Furthermore, 35% of patient groups focusing on blood disorders/bleeding disorders say that they represent patients on regulatory bodies, and 52% of patient groups from Australasia (Australia and New Zealand) say the same.
- Networking with peer patient groups. When patient groups speak collectively, they have greater impact on society than as an individual organisation. This networking question measures the willingness of the members of the patient movement to work together. However, the data show that levels of networking with peer patient organisations has not changed markedly between 2012 to 2018 . Fragmentation and
competition continue to pervade the patient movement within their own specialty areas—a factor which dilutes its overall influence in healthcare systems, and also indicates that the movement has further to mature.
- Reputation. By their own account, patient groups believe their overall reputation to remain largely unchanged for the last six years—and sitting at a relatively low point. Interestingly, this finding comes despite an increase in patient-group reach among patients, and increased engagement with other healthcare stakeholders (notably
regulators). Furthermore, of the 22% of patient groups that have a relationship with regulators, only 40% believe regulators consider them “Very good” at fulfilling the needs of the patients and people they represent.
- Impact on health policy. The 2018 results cannot be compared directly with those from the 2012 and 2014 surveys, as the question was phrased differently in the two previous years. However, noticeable is that the percentages of answers stating “No: the government does not consider our organisation’s therapy area a policy priority” have declined sharply—from 42% in 2012, and 44% in 2014, to 30% in 2018.
Therefore, it is possible to conclude that a sizeable number of patient groups in 2018 believe themselves capable of influencing government healthcare policy (at least, some of the time).
- Resilience. This indicator measures how well patient groups cope with challenges that are common within their areas of activity. Responses received suggest that patient groups still experience difficulty in 2018 in coping with a whole series of challenges, including (but not limited to):
lack of funding; inadequate patient access to needed medicines; public apathy to their message; inability to get that message across in the general media; and a lack of research investment (the latter, whether in their particular country, or in their therapy area).
So, how did the patient groups from the 17 different therapy perform for capability?
Note to Table 4: Rankings in 2018 are out of 17 therapy areas. In the 2014 exercise, rankings were out of 11 therapy areas. And, in 2012, out of 11 therapy areas.
Table 4: Overall rankings for capability of patient groups from 17 different therapy areas
- Overall 1st for capability – Blood/bleeding disorders. In 2018, the 23 respondent patient groups specialising in blood disorders not only attain an overall 1st-place out of 17 therapy areas for their capabilities as patient groups, but also rank 1st for five of the eight individual indicators of patient-group capability. The only apparent significant difficulty encountered by blood-disorders patient groups is e-communication. Blood-disorders patient groups rank just 11th out of the 17 therapy areas for this indicator of capability.
- Overall 2nd – HIV/AIDS. The 33 HIV/AIDS patient groups responding to the 2018 study rank overall 2nd for patient-group capability. HIV/AIDS patient groups were ranked overall 1st in both 2014 and 2012, and they have continued to maintain high standards during the last six years throughout many of their activities.
- Overall 3rd – Cancer. 2018’s 206 respondent cancer patient groups rank
overall 3rd out of 17 therapy areas (an improvement on their overall rank in both 2014 and 2012).
ABOUT THIS REPORT:'Benchmarking the Patient Movement, 2018. Part I: Analysing 17 Therapeutic Areas' Part I of the 'Benchmarking' report provides: - The complete set of data for
the 65 questions that help define the 8 indicators of patient-group capability, and overall performance for patient groups comprising each of the 17 therapeutic areas studied.
- Rankings are supplied for each of the 65 questions, so that patient groups in each of the 17 therapeutic areas studied can be compared with one another for capability as patient groups.
- Purchasers of Part I are also supplied with an accompanying full explanation of the methodology, including why each indicator was selected, as well as the overall results for each of the 65 questions for 2018, 2014, and 2012.
-End of press release-
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